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Journal of Applied Research in Intellectual Disabilities

Impact factor: 1.098 5-Year impact factor: 1.438 Print ISSN: 1360-2322 Online ISSN: 1468-3148 Publisher: Wiley Blackwell (Blackwell Publishing)

Subjects: Educational Psychology, Rehabilitation

Most recent papers:

  • Effects of a vestibular physiotherapy protocol on adults with intellectual disability in the prevention of falls: A multi‐centre clinical trial.
    Sara Cortés‐Amador, Juan J. Carrasco, Núria Sempere‐Rubio, Celedonia Igual‐Camacho, Luis A. Villaplana‐Torres, Sofía Pérez‐Alenda.
    Journal of Applied Research in Intellectual Disabilities. 13 days ago
    --- - |2+ Background Balance alterations are one of the main problems in people with intellectual disabilities (ID), increasing their risk of falls and impacting their life. Aims To describe a vestibular rehabilitation programme (VRP) and evaluate its effects on the ability to maintain balance and risk of suffering a fall. Methods Forty‐seven adults with mild to moderate ID were randomly assigned to two groups: a control group (CG, N = 24), which performed a general physical exercise only, and an experimental group (EG, N = 23) which also completed a VRP. The variables, used pre‐ and post‐training and 1 month after the intervention, were as follows: Center of Pressure Displacement, Berg Scale, Timed Up and Go Test, and the Modified Clinical Test of Sensory Interaction and Balance. Results The EG improved significantly in each variable. The CG did not show changes for any of the parameters. Conclusions A programme based on VRP may improve balance and reduce the risk of falling. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    October 11, 2018   doi: 10.1111/jar.12531   open full text
  • Access to mental health services: The experiences of people with intellectual disabilities.
    Erin Louise Whittle, Karen Raewyn Fisher, Simone Reppermund, Julian Trollor.
    Journal of Applied Research in Intellectual Disabilities. 13 days ago
    --- - |2+ Abstract Background People with intellectual disability experience higher rates of mental health disorders than the rest of the population, and expert opinion holds that multiple barriers prevent people with intellectual disability from accessing appropriate services. Methods A qualitative study was designed to explore the lived experience of barriers and enablers to access to mental health services among people with intellectual disability. Interviews and focus groups were conducted with people with intellectual disability, carers and service providers. Results Barriers and enablers were identified across four key dimensions of access: utilization of services; service availability; relevance, effectiveness and access; and equity and access. These factors operated at both systemic and personal levels. Conclusions The findings from this study provide empirical evidence of anecdotal experiences of access to mental health services and provide insight into the ways users, carers and service providers navigate an often hostile system and indicate further directions for research. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    October 11, 2018   doi: 10.1111/jar.12533   open full text
  • Issue Information.

    Journal of Applied Research in Intellectual Disabilities. October 09, 2018
    --- - - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1-4, November 2018.
    October 09, 2018   doi: 10.1111/jar.12405   open full text
  • Supporting people with intellectual disabilities in psychological therapies for depression: A qualitative analysis of supporters’ experiences.
    Katie Scott, Chris Hatton, Rosie Knight, Kevanne Singer, Dawn Knowles, Dave Dagnan, Richard P. Hastings, Kim Appleton, Sally‐Ann Cooper, Craig Melville, Rob Jones, Chris Williams, Andrew Jahoda.
    Journal of Applied Research in Intellectual Disabilities. September 28, 2018
    --- - |2+ Abstract Background Clinicians recommend including carers or others in a supporting role in the therapy as an important adaptation of psychological therapies for people with intellectual disabilities. This nested qualitative study from a larger trial explored supporters’ experiences of supporting people with intellectual disabilities receiving behavioural activation or guided self‐help therapies for depression. Method Twenty‐one purposively sampled supporters were interviewed. The semi‐structured interviews were subject to framework analysis, covering expectations of therapy, views of therapy sessions, relationships with therapist and participant, and perceived changes. Results Supporters were positive about both therapies and reported both therapy‐specific and nonspecific therapeutic factors that had significant positive impacts on people's lives. Most supporters reported their involvement contributed to the interventions’ effectiveness, and helped establish closer relationships to the people they were supporting. Conclusions The presence of supporters within psychological therapies for people with intellectual disabilities can be an effective adaptation to therapies for this population. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    September 28, 2018   doi: 10.1111/jar.12529   open full text
  • An open label discontinuation trial of long‐term used off‐label antipsychotic drugs in people with intellectual disability: The influence of staff‐related factors.
    Gerda M. Kuijper, Pieter J. Hoekstra.
    Journal of Applied Research in Intellectual Disabilities. September 28, 2018
    --- - |2+ Abstract Background Results of discontinuation of antipsychotics in people with intellectual disability are variable and may depend on staff factors. Method We attempted to taper off antipsychotics in 14 weeks after which participants were free to restart. We investigated the influence of support professionals’ feelings towards challenging behaviour, their knowledge of psychotropic drugs and clinicians’ judgements of participants’ behavioural functioning on whether or not antipsychotics were completely discontinued after 16, 28 and 40 weeks. Results Of the 129 participants, 61% achieved discontinuation at 16 weeks; at 28 and 40 weeks, 46% and 40% were completely discontinued. Staff's feelings of Depression/Anger towards their client's behaviour, less knowledge about psychotropic medication and clinicians’ judgements of behavioural worsening were negatively associated with achievement of discontinuation. Conclusions To enhance discontinuation off‐label drug use, staff's feelings should be explored, their knowledge of psychotropic drugs improved and reasons for clinicians’ judgements of participants’ behavioural worsening investigated. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    September 28, 2018   doi: 10.1111/jar.12528   open full text
  • The GO4KIDDS School Satisfaction Scale.
    Adrienne Perry, Meisha Charles, Busi Ncube, Jonathan Weiss.
    Journal of Applied Research in Intellectual Disabilities. September 17, 2018
    --- - |2+ Abstract Background School experience is an important part of the life of children with developmental disabilities (DD) and their families. Research suggests that parents of children vary in their level of satisfaction with their child's school, but methodology and results have varied and no consistent reliable measure of school satisfaction exists. This paper presents a new brief measure of school satisfaction along with preliminary information on its psychometric properties. Method Parents (n = 185) of children with moderate to severe DD completed a longer questionnaire that included the 9‐item GO4KIDDS School Satisfaction Scale. Results The GO4KIDDS School Satisfaction Scale demonstrates high internal consistency reliability (α = 0.93), good item‐total correlations, and strong correlations with a single‐item rating of school satisfaction. Conclusions Results support reliability and validity, making the proposed scale valuable for survey research investigating school satisfaction among parents of children with DD. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    September 17, 2018   doi: 10.1111/jar.12532   open full text
  • Restraint interventions in people with moderate to profound intellectual disabilities: Perspectives of support staff and family members.
    Petri J. C. M. Embregts, Annemarieke Negenman, Jolanda M. Habraken, Marike E. Boer, Brenda J. M. Frederiks, Cees M. P. M. Hertogh.
    Journal of Applied Research in Intellectual Disabilities. September 07, 2018
    --- - |2+ Abstract Background Due to incompatibilities in communication, it is key that family members and support staff can take the perspective of people with moderate to profound intellectual disabilities (ID) whilst putting aside their own perspectives. Method Ten vignettes describing types of restraint interventions (RIs) were presented to 20 unique pairs of support staff and family members related to individuals with moderate to profound ID. Results In taking their own perspective, more than half of the support staff and family members perceived all RIs as involuntary and severe. In contrast, when asked to put themselves in the position of the client/family member, only three RIs were considered involuntary by a majority of support staff and family members. Conclusions These results indicate that support staff and family members can take into account the perspective of people with moderate to profound ID in the evaluation and consideration of involuntary care. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    September 07, 2018   doi: 10.1111/jar.12519   open full text
  • Nonpharmacological treatment for individuals with intellectual disability and “personality disorder”.
    Emma M. Williams, John Rose.
    Journal of Applied Research in Intellectual Disabilities. September 04, 2018
    --- - |2+ Abstract Background Research exploring nonpharmacological interventions for individuals with intellectual disability and personality disorder was reviewed. This should prove valuable to services and professionals contemplating how to offer interventions for these individuals. Method A systematic search of electronic databases was conducted. Articles were considered for inclusion according to criteria based on the PICOS model. The quality of the research was assessed utilizing the evaluative method for determining evidence‐based practice. Results Eleven studies were reviewed with quality assessment indicating that all provided weak research evidence. Consistent flaws included insufficient description of participants and lack of control groups. Conclusions The research base exploring nonpharmacological interventions for individuals with intellectual disabilities and personality disorder includes many methodological flaws but reveals some useful information regarding the characteristics of these individuals and components of interventions to support them. Further research is needed to identify the differential effectiveness of interventions over and above other confounding factors. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    September 04, 2018   doi: 10.1111/jar.12527   open full text
  • Reasonable adjustments to provide equitable and inclusive assessment, screening and treatment of osteoporosis for adults with intellectual disabilities: A feasibility study.
    Janet Finlayson, Leyla De Amicis, Stephen Gallacher, Robin Munro, Jennifer Crockett, Jon Godwin, Wendy Feeney, Dawn A. Skelton.
    Journal of Applied Research in Intellectual Disabilities. September 03, 2018
    --- - |2+ Abstract Background People with intellectual disabilities are a high risk population for developing osteoporosis and fragility fractures, yet they experience barriers to accessing dual‐energy x‐ray absorptiometry (DXA) bone mineral density (BMD) screening and fracture assessment. Reasonable adjustments are a statutory requirement in the UK, but there is a paucity of evidence‐based examples to assist their identification, implementation and evaluation. Method Thirty adults with intellectual disabilities underwent DXA BMD screening and fracture risk assessment. Reasonable adjustments were identified and implemented. Results The presence of osteopenia or osteoporosis was detected in 23 out of 29 (79%) participants. Osteoporosis professionals report that 17 of 18 reasonable adjustments identified and implemented are both important and easy to implement. Conclusion Adults across all levels of intellectual disabilities can complete DXA BMD screening with reasonable adjustments. Widely implementing these reasonable adjustments would contribute to reducing inequalities in health care for adults with intellectual disabilities. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    September 03, 2018   doi: 10.1111/jar.12526   open full text
  • Invariance of parent ratings of attention deficit hyperactivity disorder symptoms for children with and without intellectual disability.
    Víctor B. Arias, Benito Arias, G. Leonard Burns, Mateu Servera.
    Journal of Applied Research in Intellectual Disabilities. August 29, 2018
    --- - |2+ Abstract Background Although attention deficit hyperactivity disorder (ADHD) is considered a valid diagnosis for children with intellectual disability, no studies have evaluated the invariance of ADHD symptom ratings across children with and without intellectual disability. Method Parents completed ratings on the ADHD symptoms for 189 children with intellectual disability and for 474 children without intellectual disability. Differential item functioning analysis was used to determine the equivalence of the ADHD symptoms across the two groups. Results The symptoms loses things, talks too much, and blurts out answers showed significant bias against children with intellectual disability. The prevalence of ADHD in children with intellectual disability was 18% (according to the symptom criterion), and 7.4% when the academic and/or social impairment criterion was also considered. Conclusions Most of the ADHD symptoms can be valid for the assessment of ADHD in children with mild and moderate intellectual disability. ADHD symptoms may be used in further studies to establish base rates of the disorder in the intellectual disability population. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    August 29, 2018   doi: 10.1111/jar.12525   open full text
  • Family perceptions of the impacts of a home and community based services autism waiver: Making family life possible.
    Karen Goldrich Eskow, Jean Ann Summers.
    Journal of Applied Research in Intellectual Disabilities. August 28, 2018
    --- - |2+ Abstract Background An important mechanism that provides support and services for families with a child/youth with autism spectrum disorder is the home‐ and community‐based services (HCBS) Waiver authorized by Section 1915(c) of the Social Security Act or Medicaid. Methods This study used qualitative research methods to explore parent perspectives about the impact of HCBS Waiver services on the child/youth with autism and their family. In‐depth interviews focused on aspects of the programme they valued, identification of barriers and general issues they experienced. Results Results of the qualitative study indicated that improved outcomes could be explained by providers of services who were well‐trained, flexible and allowed parents’ opportunities for choice regarding provision of services to meet child/youth and family needs. Conclusion The findings of this study provide guideposts for further research about factors that contribute to satisfaction of families receiving waiver services for quality of life and child progress. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    August 28, 2018   doi: 10.1111/jar.12518   open full text
  • What do stakeholders understand by self‐determination? Consensus for its evaluation.
    Eva Vicente, Verónica Marina Guillén, Laura Elisabet Gómez, Alba Ibáñez, Sergio Sánchez.
    Journal of Applied Research in Intellectual Disabilities. August 22, 2018
    --- - |2+ Abstract Background Advances in international studies on self‐determination point out the need for continuous efforts to deepen its understanding and implications. The aim of this study is to obtain a comprehensive pool of items to operationalize the self‐determination construct that serves as a starting point towards a valid instrument based on the reports of others. Method We conducted a Delphi study of three rounds involving three panels of experts: ten professionals, five people with intellectual disability and six relatives of people with intellectual disability. Data analysis required both qualitative and quantitative methods. Results The initial pool of 131 items was refined through the different rounds to a final set composed of 115—some were removed and new ones were added. Content‐based evidence is provided. In this study, the present authors generated a potential valid pool of items to develop a new measurement tool based on the latest advances on the self‐determination theoretical framework. Conclusions The implications for future research focus on strengthening the knowledge of self‐determination. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    August 22, 2018   doi: 10.1111/jar.12523   open full text
  • Validating GO4KIDDS as a brief measure of adaptive skills in special education settings for children with severe intellectual disability.
    Xinyu Pan, Vasiliki Totsika, Gemma Nicholls, Andreas Paris.
    Journal of Applied Research in Intellectual Disabilities. August 17, 2018
    --- - |2+ Abstract Background Adaptive skills measures tend to be lengthy. The GO4KIDDS (Great Outcomes for Kids Impacted by Severe Developmental Disabilities; (Journal of Applied Research in Intellectual Disabilities, 58, 2015 and 594)) Brief Adaptive Behaviour Scale was developed to provide a brief assessment of adaptive skills. Our study aimed to examine the psychometric properties of G04KIDDS Brief Adaptive Scale in a large sample of children in special education. Methods Teachers reported on 361 students with severe to profound intellectual disability. The scale's factor structure was examined through principal components analysis (PCA), while its convergent validity was examined in relation to the Vineland (VABS‐II; Vineland‐II adaptive behavior scales, Circle Pines, MN, AGS and 2005). Results The PCA indicated a single component measuring overall adaptive skills, which had excellent internal consistency (alpha = 0.93), and convergent validity (Pearson's r = 0.81). Conclusions Teacher‐reported scores on GO4KIDDS Brief Behaviour Scale can provide a reliable and valid composite of adaptive skills in children with severe to profound intellectual disability. The scale will be useful to researchers and teachers who need a brief descriptive assessment of adaptive functioning. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    August 17, 2018   doi: 10.1111/jar.12524   open full text
  • Service satisfaction and helpfulness ratings, mental health literacy and help seeking barriers of carers of individuals with dual disabilities.
    Joyce Man, Maria Kangas.
    Journal of Applied Research in Intellectual Disabilities. August 14, 2018
    --- - |2+ Abstract Background Carer mental health literacy and help seeking are areas that are not well researched in the intellectual disability field. This study aimed to explore the above including service utilization experiences of Australian parents with an offspring with an intellectual disability and a comorbid psychiatric disorder. Method Forty‐one parents took part in an online survey assessing satisfaction and helpfulness ratings of received services. Twenty‐six parents also completed items to assess mental health literacy and attitudinal barriers to help seeking. Results Parents showed good mental health literacy with depression and with challenging behaviour associated with autism and poorer literacy with mixed presentations. Few attitudinal barriers to help seeking were reported. Parents reported varied helpfulness and satisfaction ratings with disability and mental health services. Conclusions Parents are capable of recognizing the need to seek professional help for their offspring. Implications for service coordination, provision and carer involvement are discussed. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    August 14, 2018   doi: 10.1111/jar.12520   open full text
  • Comparing differences in support needs as perceived by parents of adult offspring with down syndrome, autism spectrum disorder and cerebral palsy.
    Chung eun Lee, Meghan M. Burke, Catherine K. Arnold, Aleksa Owen.
    Journal of Applied Research in Intellectual Disabilities. August 13, 2018
    --- - |2+ Abstract Background Parents often face many barriers when taking care of their offspring with disabilities. In childhood, support needs vary with families of children with Down syndrome often reporting less caregiving challenges. However, it is unclear whether support needs vary in adulthood. This study compared parents of adults with Down syndrome (DS), autism spectrum disorder (ASD) and cerebral palsy (CP) regarding support needs of their offspring with intellectual and developmental disabilities (IDD) and their families. Method Data were collected via a national survey in the United States with 189 parents of adults with IDD. Results Across the quantitative and qualitative analyses, parents of adults with DS (versus CP and ASD) reported significantly greater recreational, natural supports, more formal services and less future planning barriers. Conclusion The results indicate that the DS advantage may persist in adulthood regarding support needs. More research is needed to understand different types of support needs. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    August 13, 2018   doi: 10.1111/jar.12521   open full text
  • Corrigendum.

    Journal of Applied Research in Intellectual Disabilities. August 07, 2018
    --- - - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 948-948, September 2018.
    August 07, 2018   doi: 10.1111/jar.12522   open full text
  • Issue Information.

    Journal of Applied Research in Intellectual Disabilities. August 07, 2018
    --- - - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 1-4, September 2018.
    August 07, 2018   doi: 10.1111/jar.12404   open full text
  • The impact of contextual information on the emotion recognition of children with an intellectual disability.
    George Murray, Karen McKenzie, Aja Murray, Kathryn Whelan, Jill Cossar, Kara Murray, Jennifer Scotland.
    Journal of Applied Research in Intellectual Disabilities. July 17, 2018
    --- - |2+ Abstract Background Research suggests that having relevant contextual information can help increase the accuracy of emotion recognition in typically developing (TD) individuals and adults with an intellectual disability. The impact of context on the emotion recognition of children with intellectual disability is unknown. Method Emotion recognition tasks, which varied in terms of contextual information, were completed by 102 children (45 with and 57 without intellectual disability). Results There was a significant effect of age and group, with older and TD children performing better on average. There were significant group by condition interactions, whereby children with intellectual disability were more accurate at identifying emotions depicted by line drawings compared with photos with contextual information that was not directly related to the emotion being depicted. The opposite was found for TD children. Conclusions These results have implications for socio‐emotional interventions, such as universal school programmes. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    July 17, 2018   doi: 10.1111/jar.12517   open full text
  • The POMONA‐ESP project methodology: Collecting data on health indicators for people with intellectual developmental disorders.
    Annabel Folch, Rafael Martínez‐Leal, Paloma Vicens, Marcia Irazábal, Silvia Muñoz, Luis Salvador‐Carulla, Lluís Rovira, Carmen Orejuela, Maria José Cortés.
    Journal of Applied Research in Intellectual Disabilities. July 16, 2018
    --- - |2+ Abstract Background People with intellectual developmental disorders have significant health disparities and a lack of proper attention to their health needs. They have been underrepresented in scientific research, and very few studies have been carried out using a representative randomized sample. The aim of this study was to describe the methods used in the POMONA‐ESP project to recruit a representative and randomized sample of participants with intellectual developmental disorders. Methods The POMONA‐ESP project is an observational cross‐sectional study. It aims to explore the health status of people with intellectual developmental disorders across Spain and the use they make of health services. Results and conclusions The results of the POMONA‐ESP project may have a major impact on people with intellectual developmental disorders and society in general. It is the first study to obtain geographically representative epidemiological data from a large sample, information that is fundamental to improving care and healthcare planning for people with intellectual developmental disorders. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    July 16, 2018   doi: 10.1111/jar.12497   open full text
  • Measuring emotional support in family networks: Adapting the Family Network Method for individuals with a mild intellectual disability.
    Sanne A. H. Giesbers, Tess Tournier, Lex Hendriks, Richard P. Hastings, Andrew Jahoda, Petri J. C. M. Embregts.
    Journal of Applied Research in Intellectual Disabilities. July 13, 2018
    --- - |2+ Abstract Background Informal supportive networks of individuals with intellectual disability have become increasingly important. The aim of this paper is to describe how the Family Network Method – Intellectual Disability (FNM‐ID) offers a way to gather the perspective of people with mild intellectual disability on their family support. Method The FNM is designed to explore how individuals define their family contexts, and more specifically how they perceive existing supportive relationships in these contexts. Results By carefully piloting ways of questioning people with mild intellectual disability, systematic adaptations were made to the original FNM. Data obtained by the FNM‐ID can be analysed using social network analysis. Thereby, the FNM‐ID provides rich, theoretically significant information on emotional support in the family networks of individuals with mild intellectual disability. Conclusions The FNM‐ID is a useful and successfully adapted tool for other researchers and professionals to systematically explore the family support experiences of individuals with mild intellectual disability. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    July 13, 2018   doi: 10.1111/jar.12512   open full text
  • Staff members and managers’ views of the conditions for the participation of adults with profound intellectual and multiple disabilities.
    Lena Talman, Jenny Wilder, Jonas Stier, Christine Gustafsson.
    Journal of Applied Research in Intellectual Disabilities. July 12, 2018
    --- - |2+ Abstract Background Participation is a central aspect of quality of life, and it is indicative of high‐quality outcomes for people with intellectual disabilities. However, participation is difficult to achieve for adults with profound intellectual and multiple disabilities. Aim To describe staff members’ perceptions of what participation means for adults with profound intellectual and multiple disabilities. Method Using a phenomenographic approach, 27 interviews were analysed resulting in variations in the conditions for participation. Results The interviews revealed conditions for participation at individual, staff and organisational levels. Conclusion Participation appears to be an un‐reflected phenomenon, and several conditions must be met to achieve it. The conditions are experienced being fundamental for adults within the target group to achieve any kind of participation. The staff members and managers’ perceptions of participation as conditional can make it more difficult for adults within the target group to achieve the Swedish disability policy goal of participation. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    July 12, 2018   doi: 10.1111/jar.12516   open full text
  • “Put bluntly, they are targeted by the worst creeps society has to offer”: Police and professionals' views and actions relating to domestic violence and women with intellectual disabilities.
    Michelle McCarthy, Claire Bates, Paraskevi Triantafyllopoulou, Siobhan Hunt, Karen Milne Skillman.
    Journal of Applied Research in Intellectual Disabilities. July 11, 2018
    --- - |2+ Abstract Background Little is known about the attitudes and practices of key personnel towards the domestic violence experienced by women with intellectual disabilities. Method An online survey was conducted of Police officers and health and social care professionals. A total of 717 Police and other professionals across a wide variety of UK sites responded. Research questions were focussed on direct experience, attitudes and responses. Results Approximately half of all respondents had direct experience of working with a woman with intellectual disabilities who had been through domestic violence. Professionals were more likely than the Police to see women with intellectual disabilities as being especially vulnerable. The majority of both professionals and Police believed women with intellectual disabilities were deliberately targeted by violent and abusive men. Conclusions More training is needed for both the Police and health and social care professionals specifically in domestic violence as it affects women with intellectual disabilities. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    July 11, 2018   doi: 10.1111/jar.12503   open full text
  • Young children with significant developmental delay differentiate home observed attachment behaviour towards their parents.
    Sien Vandesande, Guy Bosmans, Carlo Schuengel, Bea Maes.
    Journal of Applied Research in Intellectual Disabilities. July 11, 2018
    --- - |2+ Abstract Background The hallmark of attachment is that contact, proximity and relief from stress are sought from specific individuals, laying important groundwork for healthy socioemotional functioning. This study investigated the extent to which differentiated attachment behaviour can be observed in young children with significant developmental delay (DD). Method Video‐taped observations of the parent–child and stranger–child interaction were conducted at home and complemented with questionnaires in 20 families with a child with significant DD (age 2–7 years with an average DD of 49 months). Results Children displayed more intense and persistent contact‐seeking, contact‐maintaining and resistant behaviour in the episodes with their parent compared to the episodes with the stranger. Parent‐reported secure attachment behaviour was slightly more characteristic towards mother compared to father. Conclusions Even children with significant DD develop differentiated attachment behaviour. Detailed observations may support parents in identifying the interactions that make the attachment relationship with their child special. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    July 11, 2018   doi: 10.1111/jar.12513   open full text
  • Trends and variations in per capita expenditure on adult intellectual disabilities health and social care across Scotland, and by urban/rural class.
    Marian Okon, Angela Henderson, Deborah Kinnear, Sally‐Ann Cooper.
    Journal of Applied Research in Intellectual Disabilities. July 11, 2018
    --- - |2+ Abstract Background Following the global financial crisis in 2007/08, the UK implemented an austerity programme which may impact on services. Scotland comprises both densely populated urban conurbations and highly dispersed remote rural and island communities. Method Expenditure data were extracted from Scottish Government statistics. Per capita expenditure was calculated using adjusted Scotland's 2011 census data. Results There was a 3.41% decrease in real term expenditure on adult intellectual disabilities services between 2012/13 and 2014/15 (>£32 million). In 2014/15, per capita expenditure on adult intellectual disabilities health care ranged from £1,211 to £17,595; social care from £21,147 to £83,831; and combined health and social care expenditures from £37,703 to £85,929. Per capita expenditure on combined health and social care was greater in rural areas, with more on intellectual disabilities social care, though less on health care. Conclusions Scottish expenditure on adult intellectual disabilities services has not kept abreast of rising living costs. It varies considerably across the country: a postcode lottery. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    July 11, 2018   doi: 10.1111/jar.12514   open full text
  • Ghanaian traditional and faith healers' explanatory models of intellectual disability.
    Lily Kpobi, Leslie Swartz.
    Journal of Applied Research in Intellectual Disabilities. July 11, 2018
    --- - |2+ Abstract Background The use of traditional/alternative medicine for health care in Africa has been examined for various conditions. However, there is limited research about traditional/alternative health care for intellectual disability. The present authors explored the explanatory models (EMs) of intellectual disability held by traditional/faith healers in Ghana. Methods Using a case vignette, the present authors conducted semi‐structured interviews with 36 traditional/faith healers in Accra, Ghana. Using the EMs of illness framework as a guide, participants were asked questions to examine their beliefs about the nature, causes, course and recommended treatment of intellectual disability. Results The healers' causal explanations included maternal negligence during pregnancy and spiritual factors. They also believed that intellectual disability was a congenital, lifelong condition which could not be cured. Conclusions Unlike other conditions which traditional healers claimed to cure, participants admitted that intellectual disability was not curable. The present authors suggest that the findings highlight opportunities that exist for collaboration between biomedicine and traditional medicine. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    July 11, 2018   doi: 10.1111/jar.12500   open full text
  • Physical activity levels of children and adolescents with moderate‐to‐severe intellectual disability.
    Marieke Wouters, Heleen M. Evenhuis, Thessa I. M. Hilgenkamp.
    Journal of Applied Research in Intellectual Disabilities. July 11, 2018
    --- - |2+ Abstract Background Regular participation of children and adolescents with intellectual disabilites in physical activity is important to maintain good health and to acquire motor skills. The aim of this study was to investigate the habitual physical activity in these children. Methods Sixty‐eight children and adolescents (2–18 years) with a moderate‐to‐severe intellectual disability were included in the analyses. They wore an accelerometer on eight consecutive days. Data was analysed by use of descriptive statistics and multiple linear regression analyses. Results The participants took on average 6,677 ± 2,600 steps per day, with intensity of 1,040 ± 431 counts per minute. In total, 47% of the participants were meeting physical activity recommendations. Low motor development was associated with low physical activity. Conclusions As more than half of the participants were not meeting the recommendations, family and caregivers of these children should focus on supporting and motivating them to explore and expand their physical activities. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    July 11, 2018   doi: 10.1111/jar.12515   open full text
  • Neighbourhood social inclusion from the perspective of people with intellectual disabilities: Relevant themes identified with the use of photovoice.
    Tessa Overmars‐Marx, Fleur Thomése, Herman Meininger.
    Journal of Applied Research in Intellectual Disabilities. July 05, 2018
    --- - |2+ Abstract Background Earlier studies show that to gain more understanding of the concept of social inclusion, the views and experiences of people with intellectual disabilities are needed. The aim of this study was to investigate their perspective on neighbourhood social inclusion from an ecological point of view. Method We carried out a photovoice study with 18 people with intellectual disabilities in three neighbourhoods in the Netherlands. Participants took photographs in their neighbourhood they considered relevant, and these photographs were discussed during an interview. Results Six themes emerged from qualitative analysis: attractiveness of the neighbourhood, social contacts in the neighbourhood, activities in the neighbourhood, social roles in the neighbourhood, independence and public familiarity. Conclusions As regards neighbourhood social inclusion, participants were often focused on small and informal activities and situations. Public familiarity proved very important. Framing the concept of neighbourhood social inclusion within an ecological approach may help to better understand processes of social inclusion. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    July 05, 2018   doi: 10.1111/jar.12511   open full text
  • Family and community in the lives of UK Bangladeshi parents with intellectual disabilities.
    Emily Durling, Deborah Chinn, Katrina Scior.
    Journal of Applied Research in Intellectual Disabilities. July 04, 2018
    --- - |2+ Abstract Background Little is known about the lives of parents with intellectual disabilities from minority ethnic communities. Previous research suggests that what it means to live with intellectual disabilities varies across cultural contexts. The current research aimed to explore how cultural values and practices impact upon the experiences of parents with intellectual disabilities within the Bangladeshi community in London, England. Method Six members of the Bangladeshi community, four Bangladeshi parents with intellectual disabilities and four of their family members were interviewed. Thematic analysis was used to identify key themes. Results Both parenting and intellectual disability are thought about in this community in ways that make parenting more accessible for people with learning disabilities, but also create tensions to be negotiated. Conclusions Bangladeshi family carers face dilemmas balancing the benefits and risks of promoting parenting for sons and daughters with intellectual disabilities, particularly in the context of service principles of autonomy and informed consent. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1133-1143, November 2018.
    July 04, 2018   doi: 10.1111/jar.12473   open full text
  • Children and young people with Down syndrome: Their awareness of Down syndrome and developing self‐perceptions.
    Karen Deakin, Derek G. Moore, Andrew Jahoda.
    Journal of Applied Research in Intellectual Disabilities. July 02, 2018
    --- - |2+ Abstract Background Past research suggests children with Down syndrome often lack awareness of their disability despite the visibility of their condition. Method This study used novel tasks to investigate their insight. Twenty‐eight young people with Down syndrome (aged 8–17 years) were recruited, along with control groups of 67 typically developing young people. Three tasks explored the children's awareness of Down syndrome: (a) choice of partner for social activities, (b) sorting photographs and (c) attributing positive or negative descriptors to photographs. Results All participants expressed a preference to engage in social activities with typically developing peers. Most participants with Down syndrome identified with the typically developing person. Even though all participants attributed more positive descriptors to the photographs of the typically developing individuals, they remained positive about themselves. Conclusion The early awareness of difference shown by young people with Down syndrome suggests this may play an important role in their developing identities. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1197-1208, November 2018.
    July 02, 2018   doi: 10.1111/jar.12494   open full text
  • Development and applicability of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI).
    Cis Vrijmoeth, Michael A. Echteld, Pim Assendelft, Milou Christians, Dederieke Festen, Henny Schrojenstein Lantman‐de Valk, Kris Vissers, Marieke Groot.
    Journal of Applied Research in Intellectual Disabilities. July 01, 2018
    --- - |2+ Abstract Background Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability. Method We used a five‐stage mixed‐methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5–6 months. Results The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: Most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health. Conclusions PALLI shows promising applicability and has potential as a tool for timely identifying people with intellectual disabilities who may benefit from palliative care. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1122-1132, November 2018.
    July 01, 2018   doi: 10.1111/jar.12472   open full text
  • Violent incidents in a secure service for individuals with learning disabilities: Incident types, circumstances and staff responses.
    Javier Malda Castillo, Ian Smith, Lucy Morris, Guillermo Perez‐Algorta.
    Journal of Applied Research in Intellectual Disabilities. June 28, 2018
    --- - |2+ Abstract Background The issue of violence in secure services has long been recognized both in the UK and worldwide. However, there is currently scarce literature available about violence within learning disability (LD) secure settings. Methods Secondary data analysis was conducted on violent incidents, using information routinely collected by the staff over a 1‐year period. Results Physical assaults were the most frequent type of incident, and the distribution in terms of days or months was homogenous and incidents were concentrated in the corridors, lounges and dining rooms of secure facilities. Antipsychotic medication was not regularly prescribed. Generalized linear modelling analyses revealed significant predictors that increased the chances of seclusion and physical restraint, such as being female or directing the violence towards staff. Conclusions These findings can inform staff training on violence prevention and suggest that increased ward‐based supervision and enhanced use of psychological formulations may help in reducing violence within this service context. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1164-1173, November 2018.
    June 28, 2018   doi: 10.1111/jar.12490   open full text
  • Engaging with and navigating limbo: Lived experiences of siblings of adults with autism spectrum disorders.
    Hester Noonan, Isabelle O’ Donoghue, Charlotte Wilson.
    Journal of Applied Research in Intellectual Disabilities. June 28, 2018
    --- - |2+ Abstract Background Supporting an adult with autism spectrum disorder (ASD) can be associated with family stress but also with personal growth and resilience. Research providing insight into how typically developing siblings make sense of their unique sibling relationships in adulthood remains limited. Method Using interpretative phenomenological analysis, this study explored subjective experiences of eight siblings of adults with ASD and co‐occurring intellectual disability. Results Analysis of interview transcripts revealed a complex lived experience explained by the overarching theme “engaging with and navigating limbo”, which was characterized by commitment to the sibling relationship, power tensions in the family, uncertainty about the future and negotiating the tension between relational closeness and distance. Conclusion Using family systems theory, overregulation and closed communication emerged as processes relevant to families living with ASD. Clinical opportunities to support family communication, change tolerance and belonging are discussed. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1144-1153, November 2018.
    June 28, 2018   doi: 10.1111/jar.12474   open full text
  • The lifestyle behaviours of young adults with intellectual disabilities as they transition from school to adulthood: A pilot and feasibility study.
    Fiona Mitchell, Gemma Stevens, Andrew Jahoda, Lynsay Matthews, Catherine Hankey, Heather Murray, Craig Melville.
    Journal of Applied Research in Intellectual Disabilities. June 28, 2018
    --- - |2+ Abstract Background In the general population, the transition from adolescence to adulthood has been identified as a “high‐risk” period for weight gain. There has been no research examining health behaviours over this transition in adults with intellectual disabilities. Methods/design The feasibility of recruitment, retention and relevant health behaviours were measured in 31 adolescents with mild‐moderate intellectual disabilities. Anthropometric, objective physical activity, dietary and self‐determination measures were collected over a 12‐month transitional period from school to adulthood. Results Key results suggest weight and BMI increased significantly from month 6 to month 12 (p = 0.044 and p = 0.043). Waist circumference increased significantly from baseline to month 12 (p = 0.049), and from month 6 to month 12 (p = 0.03). Discussion Recruiting and retaining young adults with intellectual disabilities over a 12‐month health behaviour study is feasible. The data indicate the transition from school to adulthood may be the start of a high‐risk period for weight gain. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1154-1163, November 2018.
    June 28, 2018   doi: 10.1111/jar.12489   open full text
  • Effectiveness of Active Support for adults with intellectual disability in residential settings: Systematic review and meta‐analysis.
    Samantha Flynn, Vasiliki Totsika, Richard P. Hastings, Kerry Hood, Sandy Toogood, David Felce.
    Journal of Applied Research in Intellectual Disabilities. June 27, 2018
    --- - |2+ Abstract Background The review examined the effectiveness of Active Support (RQ1) and stakeholders’ experiences of the model (RQ2). Method Data were meta‐analysed (RQ1; studies = 14) and synthesized narratively (RQ2; studies = 10). Results By follow‐up (6 months post‐training), effect sizes (RQ1) for resident total activity engagement were significant and ranged from small (d = 0.33, 95% CIs: 0.10–0.50) to large (Tau‐U = 0.95, 95% CIs: 0.64–1.25) depending on study design. Follow‐up changes in staff assistance were moderate (d = 0.56, 95% CIs: 0.23–0.89; Tau‐U 0.63, 95% CIs: 0.32–0.93) and large for quality of support (d = 1.03, 95% CIs: 0.61–1.44). Other outcomes did not change. Conclusions Active Support was more effective following complete staff training, in larger settings, at lower staff‐to‐resident ratios and with less experienced staff. Active Support training and outcomes were valued by staff and residents (RQ2), and staff experienced increased job satisfaction. Lower staff turnover and organizational readiness appear crucial for maintaining implementation. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 983-998, November 2018.
    June 27, 2018   doi: 10.1111/jar.12491   open full text
  • An exploration of communication within active support for adults with high and low support needs.
    Teresa Iacono, Emma Bould, Julie Beadle‐Brown, Christine Bigby.
    Journal of Applied Research in Intellectual Disabilities. June 27, 2018
    --- - |2+ Abstract Background The aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs. Methods Data from 182 service users, 20–81 years (mean = 40), 89 with high support needs, were observed to have either good (n = 142) or poor (n = 40) communication support. Measures were of quality of active support, engagement and staff contact; field notes provided examples of good and poor communication supports. Results We found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some examples of appropriate communication supports, but limited use of augmentative and alternative communication (AAC). Conclusions Staff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    June 27, 2018   doi: 10.1111/jar.12502   open full text
  • Beliefs about intellectual disability among employees at a state facility and undergraduate students: An exploratory analysis.
    Jessica S. James.
    Journal of Applied Research in Intellectual Disabilities. June 27, 2018
    --- - |2+ Abstract Background Individuals with intellectual disability are subject to stigmatization, even among those providing services to them. Method Employees from an intermediate care facility (n = 97) and undergraduate students (n = 92) completed measures on their attitudes, beliefs of etiological causes and endorsement of helpful treatments and supports. Results Overall, participants reported few stigmatizing attitudes and high levels of support for interventions. Differences between employees and students emerged in regard to attitudes and causal beliefs, with employees reporting more support for sheltering and less endorsement of biomedical causes. Among students, those that reported knowing someone with intellectual disability reported less agreement with causal factors as well as differences in what supports were thought to be necessary or beneficial. Conclusions Attitudes and beliefs are interrelated and while familiarity impacts these views, it does not necessarily lead to greater understanding or endorsement of treatments or supports. The effects of familiarity on attitudes and beliefs should continue to be explored. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    June 27, 2018   doi: 10.1111/jar.12501   open full text
  • Job satisfaction among disabled people in the sheltered workshop: Differential analysis.
    Jose Francisco Lukas, Luis Lizasoain, Javier Galarreta, Juan Etxeberria.
    Journal of Applied Research in Intellectual Disabilities. June 27, 2018
    --- - |2 Abstract This paper analyses job satisfaction and differences in factors affecting it among workers with an intellectual disability and mental illness (MI) depending on their work regime [special employment regime (SER) or occupational service (OS)]. To do so, answers were analysed from 874 participants on a Job Satisfaction Scale used in sheltered workshops in Spain. The results indicate that job satisfaction among workers with intellectual disability and MI in both the SER and the OS regimes is high, with the highest job satisfaction deriving from the Items of communicating problems to resolve them. The lowest levels of job satisfaction are related to the opportunity to take decisions and participate at work. In the majority of the Items analysed, no differences were found on the basis of the age groups considered nor the gender of the participants. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1174-1185, November 2018.
    June 27, 2018   doi: 10.1111/jar.12492   open full text
  • “Having friends is like having marshmallows”: Perspectives of transition‐aged youths with intellectual and developmental disabilities on friendship.
    Claire Hurd, Cara Evans, Rebecca Renwick.
    Journal of Applied Research in Intellectual Disabilities. June 27, 2018
    --- - |2+ Abstract Background The literature emphasizes that friendships are essential to youths’ successful transition to and adjustment in adulthood. Few studies have explored the friendships of transition‐aged youths with intellectual and developmental disabilities (IDD), and even fewer include youths’ own perspectives. This qualitative study explored the perspectives of transition‐aged youths with IDD regarding their own experiences of friendship. Method A subset of video‐recorded data of 21 interviews with seven participants (20–24 years) was extracted from a larger study for secondary analysis. Data were analysed using thematic analysis, informed by constructivist grounded theory methods. Results Three themes were revealed: meanings of friends and friendship, deepening self‐knowledge and negotiating in(ter)dependence. Conclusions The findings expand existing knowledge about friendships of transition‐aged youths with IDD. Findings can potentially inform development of new services or enhancement of existing services aimed at facilitating transition to adulthood for youths with IDD and point to key areas for future research. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1186-1196, November 2018.
    June 27, 2018   doi: 10.1111/jar.12493   open full text
  • How best to support individuals with IDD as they become frail: Development of a consensus statement.
    Hélène Ouellette‐Kuntz, Lynn Martin, Eilish Burke, Philip McCallion, Mary McCarron, Eimear McGlinchey, Magnus Sandberg, Josje Schoufour, Shahin Shooshtari, Bev Temple.
    Journal of Applied Research in Intellectual Disabilities. June 27, 2018
    --- - |2+ Abstract Background While higher rates and earlier onset of frailty have been reported among adults with intellectual and developmental disabilities (IDD), research on how best to support these individuals is lacking. Method An international consultation relied on three consensus building methods: the Nominal Group Technique, an NIH consensus conference approach, and a Delphi survey. Results There is agreement that person‐centered planning and aging in place should be guiding principles. Frailty must be considered earlier than in the general population with the recognition that improvement and maintenance are viable goals. Intersectoral collaboration is needed to coordinate assessments and actions. Safety and planning for the future are important planning considerations, as are the needs of caregivers. Ongoing research is needed. Conclusion The statement offers guidance to respond to frailty among adults with IDD and fosters ongoing exchange internationally on best practice. As new evidence emerges, the statement should be revisited and revised. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    June 27, 2018   doi: 10.1111/jar.12499   open full text
  • Psychological status and coping styles of caregivers of individuals with intellectual disability and psychiatric illness.
    Anuja S. Panicker, Sonali Ramesh.
    Journal of Applied Research in Intellectual Disabilities. June 27, 2018
    --- - |2+ Abstract Background The psychological status of caregivers of individuals with intellectual disability and psychiatric illness (PI) is important for effective management. The aim of this study was to examine the psychological status and its relationship with coping styles among these caregivers. Materials & Methods Caregivers (N = 80) of individuals with intellectual disability (n = 40) and PI (n = 40) were administered a socio‐demographic questionnaire, depression, anxiety and stress scale and COPE Inventory. Results Caregivers experienced depression, anxiety and stress symptoms. These symptoms were found to be significantly higher among caregivers of individuals with intellectual disability than those with PI. The most common coping style used was religious coping. Use of positive reinterpretation and growth was associated with lower levels of depression and stress symptoms. Conclusion Caregivers’ mental health plays an important role in the quality of care delivery and outcome. Use of appropriate coping styles can reduce the impact of these symptoms. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    June 27, 2018   doi: 10.1111/jar.12496   open full text
  • Health indicators in intellectual developmental disorders: The key findings of the POMONA‐ESP project.
    Annabel Folch, Luis Salvador‐Carulla, Paloma Vicens, Maria José Cortés, Marcia Irazábal, Silvia Muñoz, Lluís Rovira, Carmen Orejuela, Juan A. González, Rafael Martínez‐Leal.
    Journal of Applied Research in Intellectual Disabilities. June 27, 2018
    --- - |2+ Abstract Background The aim of this paper was to summarize the main results of the POMONA‐ESP project, the first study to explore health status in a large representative, randomized and stratified sample of people with intellectual developmental disorders in Spain. Methods The POMONA‐ESP project collected information about the health of 953 individuals with intellectual developmental disorders. Results Diseases such as urinary incontinence, oral problems, epilepsy, constipation or obesity were highly prevalent among the participants; with gender‐differentiated prevalences for certain conditions, and age and intellectual disability level as risk factors for disease. Overmedication was common in the sample, and drugs were often prescribed without any clinical indication or follow‐up. The present authors also found a lack of important relevant information about the participant's health and a lack of adequate genetic counselling. Conclusions Our findings may contribute to a better understanding of health status and needs of people with intellectual developmental disorders and suggest several courses of action to improve their health care. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    June 27, 2018   doi: 10.1111/jar.12498   open full text
  • “I don't want to take any risks even if it's gonna mean this service‐user is gonna be happier”: A thematic analysis of community support staff perspectives on delivering Transforming Care.
    Adam Clifford, PJ Standen, Jo Jones.
    Journal of Applied Research in Intellectual Disabilities. June 27, 2018
    --- - |2+ Abstract Background Transforming Care is making mixed progress in supporting people with intellectual and developmental disabilities, and complex needs, move to more appropriate specialist accommodations closer to home. Community support staff often spend greatest amounts of time with service‐users, yet are some of the least heard voices about why placements succeed and fail to varying extents. Method Managers and support staff (n = 13), working in ostensibly “specialist” community placements, were interviewed about perceived barriers and facilitators to implementing Transforming Care. Transcripts were subjected to thematic analysis. Results Participants identified difficulties balancing people's rights, safety and quality of life needs, and felt the system's expectations of them are hard to deliver within the resources, legislation, values and support models provided them. Multidisciplinary expertise was highly valued for both emotional and practical support, but was least valued when perceived as overly blaming or inspectorial. Specialist health input was seen to withdraw prematurely for this particular client group. Conclusion Recommendations are provided for how staff perspectives should inform Transforming Care in interests of service‐users. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1209-1218, November 2018.
    June 27, 2018   doi: 10.1111/jar.12495   open full text
  • Transition from school to adult services for young people with severe or profound intellectual disability: A systematic review utilizing framework synthesis.
    Paula Jacobs, Kenneth MacMahon, Ethel Quayle.
    Journal of Applied Research in Intellectual Disabilities. June 22, 2018
    --- - |2+ Background The transition to adulthood has been described as a difficult time in the lives of young people with intellectual disability. There has been little emphasis on young people with severe or profound intellectual disability specifically, even though their pathways may differ, due to greater support needs across the life course. Methods A systematic review was conducted utilising Bronfenbrenner's ecological model to inform framework analysis to synthesise qualitative findings. Results Taking an ecological perspective proved valuable. The transition process was described as stressful and barriers were identified across the ecological levels. Parents accounted for the majority of participants in studies, and the needs of young people and their parents emerged as highly interdependent. Conclusion Themes reflect the complex nature of the question what adulthood should look like for individuals with severe or profound intellectual disability. There is a lack of involvement of multiple stakeholders and young people themselves within studies. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 962-982, November 2018.
    June 22, 2018   doi: 10.1111/jar.12466   open full text
  • Exploring barriers and facilitators in the implementation and use of guideline recommendations on antipsychotic drug prescriptions for people with intellectual disability.
    Lotte Ramerman, Pieter J. Hoekstra, Gerda de Kuijper.
    Journal of Applied Research in Intellectual Disabilities. June 20, 2018
    --- - |2+ Background It is unknown why professionals’ adherence to guideline recommendations on antipsychotic drug prescription in the intellectual disabilities care is insufficient. This study aimed to explore barriers and facilitators in the implementation and use of these recommendations. Methods In‐depth interviews with four intellectual disability physicians, two psychiatrists and five behavioural scientists were used to explore the implementation and use of guideline recommendations. Results Barriers in adhering to recommendations were lack of collaboration of different disciplines involved in the treatment of psychiatric and behavioural disorders and lack of enforcement of an appropriate monitoring of side‐ and treatment effects. When guideline recommendations were translated into organizational policies, clinicians were able to divide responsibilities and tasks, needed to appropriately implement guideline recommendations in daily clinical practice. Conclusions To facilitate the use of guideline recommendations, organizations should translate recommendations into organization‐specific policies, involving physicians and behavioural scientists in this process, while simultaneously creating more practical and technological support. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1062-1070, November 2018.
    June 20, 2018   doi: 10.1111/jar.12461   open full text
  • Measuring Quadriceps strength in adults with severe or moderate intellectual and visual disabilities: Feasibility and reliability.
    Annemarie Dijkhuizen, Rob K. Douma, Wim P. Krijnen, Cees P. van der Schans, Aly Waninge.
    Journal of Applied Research in Intellectual Disabilities. May 30, 2018
    --- - |2+ Background A feasible and reliable instrument to measure strength in persons with severe intellectual and visual disabilities (SIVD) is lacking. The aim of our study was to determine feasibility, learning period and reliability of three strength tests. Methods Twenty‐nine participants with SIVD performed the Minimum Sit‐to‐Stand Height test (MSST), the Leg Extension test (LE) and the 30 seconds Chair‐Stand test (30sCS), once per week for 5 weeks. Feasibility was determined by the percentage of successful measurements; learning effect by using paired t test between two consecutive measurements; test–retest reliability by intraclass correlation coefficient and Limits of Agreement and, correlations by Pearson correlations. Results A sufficient feasibility and learning period of the tests was shown. The methods had sufficient test–retest reliability and moderate‐to‐sufficient correlations. Conclusion The MSST, the LE, and the 30sCS are feasible tests for measuring muscle strength in persons with SIVD, having sufficient test re‐test reliability. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1083-1090, November 2018.
    May 30, 2018   doi: 10.1111/jar.12468   open full text
  • Parenting stress and depressive symptoms in Taiwanese mothers of young children with autism spectrum disorder: Association with children’s behavioural problems.
    Yuh‐Ming Hou, Lydia Stewart, Lai‐Sang Iao, Chin‐Chin Wu.
    Journal of Applied Research in Intellectual Disabilities. May 23, 2018
    --- - |2+ Background This study examined the severity of parenting stress and depressive symptoms in Taiwanese mothers of young children with autism spectrum disorder (ASD) compared to mothers of young children with developmental delay (DD). The associations between parenting stress, depressive symptoms, and children’s behavioural problems were also tested. Methods The study sample included 51 young children with ASD (mean age = 31 months), 51 young children with DD (mean age = 30 months) and their mothers. Results The results confirmed that mothers of young children with ASD experienced higher levels of parenting stress and depressive symptoms than mothers of young children with DD. In addition, children’s behavioural problems were robust predictors of parenting stress and depressive symptoms in mothers of young children with ASD, but not in mothers of young children with DD. Conclusion The findings indicated that one of the critical goals in early intervention for young children with ASD and their families is to reduce children’s behavioural problems. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1113-1121, November 2018.
    May 23, 2018   doi: 10.1111/jar.12471   open full text
  • Perceptions of sex offenders with intellectual disability: A comparison of forensic staff and the general public.
    Jennifer Steans, Simon Duff.
    Journal of Applied Research in Intellectual Disabilities. May 15, 2018
    --- - |2+ Background Existing literature suggests that individuals with intellectual disability are not always held accountable for their actions and forensic staff are unlikely to report their sexually harmful behaviour. Method This research explores how categorization of an offender as having intellectual disability and the framing of an offence as planned or opportunistic, impacts upon ratings of risk, blame and intent by forensic staff and the general public. The impact of pre‐existing attitudes towards sex offenders upon these ratings was also considered. Results Differences are identified between participants' ratings when the offender is categorized as having an intellectual disability. More positive attitudes are associated with lower ratings of several factors. Conclusions Individuals with overly positive attitudes towards sex offenders could underestimate the risk posed by sex offenders with intellectual disability. These results are important to consider alongside the NHS Transforming Care Agenda. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    May 15, 2018   doi: 10.1111/jar.12467   open full text
  • The role of professionals in promoting independent living: Perspectives of self‐advocates and front‐line managers.
    Maria Pallisera, Montserrat Vilà, Judit Fullana, Gemma Díaz‐Garolera, Carolina Puyalto, Maria‐Josep Valls.
    Journal of Applied Research in Intellectual Disabilities. May 15, 2018
    --- - |2+ Background Support from professionals plays an important role in helping people with intellectual disabilities to live an independent life. This research aims to analyse the role played by support professionals based on the perceptions of the professionals and self‐advocates with intellectual disabilities. The research was conducted in Catalonia (Spain). Method A total of 33 interviews were conducted with front‐line managers and 10 focus groups with 72 self‐advocates. These were recorded and transcribed, and then analysed using thematic content analysis. Results Self‐advocates particularly value professionals' interpersonal skills and emotional support. Front‐line managers and self‐advocates highlight training actions aimed at enhancing autonomy in the home and propose fostering natural supports and increasing the involvement of people with disabilities. Conclusions Making progress in the rights of people with intellectual disabilities to an independent life requires requires transforming the support model, promoting decision making among people with intellectual disabilities, and strengthening interpersonal skills linked to emotional support in the training of professionals. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1103-1112, November 2018.
    May 15, 2018   doi: 10.1111/jar.12470   open full text
  • “… but if you're afraid of things, how are you meant to belong?” What belonging means to people with intellectual disabilities?
    Iva Strnadová, Kelley Johnson, Jan Walmsley.
    Journal of Applied Research in Intellectual Disabilities. May 15, 2018
    --- - |2+ Background A policy commitment to social inclusion has brought about some positive changes in the lives of people with intellectual disabilities; yet many also continue to experience social isolation, poverty and abuse. The authors introduce a framework for belonging from the literature and then present a study exploring the views of people with intellectual disabilities about belonging. These are discussed in relation to the framework identified from the literature. Method Three focus groups with 24 participants with intellectual disabilities were conducted in New South Wales and Victoria (Australia). The authors used inductive content analysis to identify four meanings of belonging: (i) belonging in relation to place, (ii) as being part of a community, (iii) as having relationships and (iv) as identity. Also discussed are commonly experienced barriers to belonging identified by participants. Conclusions Implications for policy, service provision and practice are discussed. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1091-1102, November 2018.
    May 15, 2018   doi: 10.1111/jar.12469   open full text
  • The prevalence of obesity in children and young people with Down syndrome.
    Muireann O' Shea, Carol O' Shea, Louise Gibson, Jennifer Leo, Catherine Carty.
    Journal of Applied Research in Intellectual Disabilities. May 15, 2018
    --- - |2+ Background Overweight and obesity is a growing concern among individuals with intellectual disabilities; however, little is known about the prevalence among children and youth with Down syndrome (CYDS). The purpose of this study was to determine the prevalence of overweight/obesity among CYDS in South West Ireland. Methods This cross‐sectional study measured height and weight of 61 CYDS aged 4–16 years. Body mass index (BMI) was calculated and percentage body fat (PBF) was measured using bio‐electrical impendence analysis (BIA). Results Using the International Obesity Task Force BMI cut‐offs, 51.6% of males and 40% of females were overweight/obese compared to 32% and 14.8%, respectively, using PBF. The mean PBF for males was 18.76 versus females 22.38 (p < .05). There is a higher prevalence of overweight/obesity, particularly in males, compared to the general population of children. Conclusions The difference in estimation of overweight/obesity between BMI and BIA has implications for research and clinical practice. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1225-1229, November 2018.
    May 15, 2018   doi: 10.1111/jar.12465   open full text
  • The protective scale of the Armidilo‐S: The importance of forensic and clinical outcomes.
    William R Lindsay, Lesley R Steptoe, Fabian Haut, Sandra Miller, Jane Macer, Ronnie McVicker.
    Journal of Applied Research in Intellectual Disabilities. May 15, 2018
    --- - |2+ Background The Armidilo has two scales—the risk scale and the protective scale. Research has been confined to the risk scale which appears to predict future incidents with medium to large effect sizes. There have been no publications on the use of the protective scale. Methods The Armidilo was completed on four individuals with IDD who were either moving on from their placement or whose placement was in jeopardy because of new information or altered policies in the organization. The Armidilo was completed in the usual fashion. Results Risk and protective results show that for each individual, recommendations could be made that ensured the best outcome. For two participants, restrictive placements were avoided because of the data on protective factors. Conclsions The protective scale can be a powerful support for the clinician's case in offenders with IDD. The protective scale should be completed routinely for clinical evaluation. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    May 15, 2018   doi: 10.1111/jar.12456   open full text
  • Identification of spatiotemporal gait parameters and pressure‐related characteristics in children with Angelman syndrome: A pilot study.
    Joseph C. Grieco, Arnaud Gouelle, Edwin J. Weeber.
    Journal of Applied Research in Intellectual Disabilities. May 08, 2018
    --- - |2+ Background Angelman syndrome (AS) leads to clinical manifestations that include intellectual impairments, developmental delay and poor motor function. Initiatives to develop therapeutics implie an urgent need to identify methods that accurately measure the motor abilities. Methods Six children with AS (6 to 9 years old) walked on an instrumented walkway to get spatiotemporal parameters (STPs) and center of pressure (CoP). These outcomes were compared to typically developing children (TD): 44 TD 6 to 9 years old and 20 TD 4 to 5 years old. Results Analysis revealed differences in all STPs and gait variability index when compared to TD individuals. When AS participants were compared to younger TD individuals, except step length, STPs were different. Analysis of the CoP pathway revealed a less consistent and efficient pathway in AS. Conclusions We could delineate the functional difference between children with AS and TD children. The variability of STP and the CoP were the most valuable components in gait to be considered in AS. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1219-1224, November 2018.
    May 08, 2018   doi: 10.1111/jar.12462   open full text
  • An evaluation of staff training in positive behavioural support.
    Anne MacDonald, Peter McGill, Glynis Murphy.
    Journal of Applied Research in Intellectual Disabilities. May 08, 2018
    --- - |2+ Background Positive Behavioural Support (PBS) has been shown to be effective in minimizing challenging behaviour and improving the lives of people with intellectual disabilities. Training in PBS is an important factor in achieving good coverage in the use of PBS. The aim of this study was to evaluate the impact of training managers of social care services in PBS. Method A year‐long training programme in PBS was delivered to 50 managers of community‐based services for people with challenging behaviour. Data were collected pre‐ and post‐training, and at six month follow‐up. A non‐randomized control group design was used. Results Data demonstrated significant reduction in challenging behaviour. However, there was no change in quality of life for service users. Conclusion Training in PBS can reduce challenging behaviour in people with intellectual disabilities; demonstrating any impact of PBS training on quality of life remains a challenge. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1046-1061, November 2018.
    May 08, 2018   doi: 10.1111/jar.12460   open full text
  • Effects of lifestyle change interventions for people with intellectual disabilities: Systematic review and meta‐analysis of randomized controlled trials.
    Mariël Willems, Aly Waninge, Thessa I. M. Hilgenkamp, Pepijn van Empelen, Wim P. Krijnen, Cees P. van der Schans, Craig A. Melville.
    Journal of Applied Research in Intellectual Disabilities. May 08, 2018
    --- - |2+ Background Promotion of a healthy lifestyle for people with intellectual disabilities is important; however, the effectiveness of lifestyle change interventions is unclear. Aims This research will examine the effectiveness of lifestyle change interventions for people with intellectual disabilities. Methods and Procedures Randomized controlled trials (RCTs) of lifestyle change interventions for people with intellectual disabilities were included in a systematic review and meta‐analysis. Data on study and intervention characteristics were extracted, as well as data on outcome measures and results. Internal validity of the selected papers was assessed using the Cochrane Collaboration's risk bias tool. Outcomes and Results Eight RCTs were included. Multiple outcome measures were used, whereby outcome measures targeting environmental factors and participation were lacking and personal outcome measures were mostly used by a single study. Risks of bias were found for all studies. Meta‐analysis showed some effectiveness for lifestyle change interventions, and a statistically significant decrease was found for waist circumference. Conclusion and Implications Some effectiveness was found for lifestyle change interventions for people with intellectual disabilities. However, the effects were only statistically significant for waist circumference, so current lifestyle change interventions may not be optimally tailored to meet the needs of people with intellectual disabilities. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 949-961, November 2018.
    May 08, 2018   doi: 10.1111/jar.12463   open full text
  • How frontline staff manage paperwork in group homes for people with intellectual disability: Implications for practice.
    Claire Quilliam, Christine Bigby, Jacinta Douglas.
    Journal of Applied Research in Intellectual Disabilities. May 08, 2018
    --- - |2+ Background Paperwork is a key tool that transforms organizational intentions into actions in group homes, although prescriptive procedures may limit how frontline staff use it in practice. The aim of this study was to explore how frontline staff use paperwork in group homes for people with intellectual disability and identify practice implications. Method Constructivist grounded theory methodology guided the research. Data collection included semi‐structured interviews and participant observations. Coding, comparison and sorting methods were adopted to analyse how staff used paperwork. Results Staff followed organizational paperwork rules when they aligned with their resident‐focused approach to work. When they perceived rules to misalign with this approach, they managed paperwork by adjusting the time and place of completion, managing content, creating alternative tools and refusing completion. Conclusions Staff purposefully managed paperwork rather than simply following procedures. Disability service organizations could develop flexible paperwork procedures and include frontline perspectives in paperwork development. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 905-914, September 2018.
    May 08, 2018   doi: 10.1111/jar.12450   open full text
  • Computer‐assisted cognitive behavioural therapy: The experiences of adults who have an intellectual disability and anxiety or depression.
    Patricia Cooney, Catherine Jackman, Conall Tunney, David Coyle, Gary O'Reilly.
    Journal of Applied Research in Intellectual Disabilities. May 03, 2018
    --- - |2+ Background Despite its evidence base in the general population, computerized cognitive behavioural therapy (cCBT) has not yet been adapted for use with people with intellectual disability. This study aimed to explore the experiences of adults with an intellectual disability who played a cCBT program. Method Twenty‐four adults (with a mild or moderate intellectual disability and clinically significant anxiety or depression) who were in the treatment arm of a pilot randomized controlled trial evaluating the cCBT program were individually interviewed. Thematic analysis was used to analyse and report themes within the data. Results Participants found playing the program to be an enjoyable and novel experience and that it was challenging and helpful. It allowed them to develop and reflect on relationships and increased their awareness of thoughts, feelings and behaviours. Conclusions Combining technology with CBT is an effective way to reduce barriers to accessing mental health interventions and technology for this population. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1032-1045, November 2018.
    May 03, 2018   doi: 10.1111/jar.12459   open full text
  • Dementia care mapping to support staff in the care of people with intellectual disability and dementia: a feasibility study.
    Feija D. Schaap, Andrea S. Fokkens, Geke J. Dijkstra, Sijmen A. Reijneveld, Evelyn J. Finnema.
    Journal of Applied Research in Intellectual Disabilities. April 24, 2018
    --- - |2+ Background The number of people with intellectual disability and dementia increases; this combination causes behavioural changes. Dementia Care Mapping (DCM) supports staff in dementia care in nursing homes and may be useful in intellectual disability‐care. This qualitative study examines the feasibility of DCM for older people with intellectual disability and dementia. Methods The present authors obtained data in focus groups and interviews with professional users and analysed using a framework for feasibility studies. With experts in dementia and intellectual disability researches, the present authors determined the overall feasibility. Results DCM was found to be feasible in intellectual disability‐care, regarding five domains of feasibility. Staff reported DCM to be useful and valuable and addresses to their demand for skills and knowledge. All professional users found DCM feasible in intellectual disability‐care, which was confirmed by experts. Conclusions DCM is feasible in intellectual disability‐care. When fully tailored to intellectual disability‐care, DCM is useful and provides opportunities to assess its effectiveness. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1071-1082, November 2018.
    April 24, 2018   doi: 10.1111/jar.12464   open full text
  • Evaluating the characteristics of the grieving process in people with intellectual disability.
    M. Ángeles Alcedo Rodríguez, Leticia Cristóbal Fernández, Laura E. Gómez Sánchez, Víctor B. Arias González.
    Journal of Applied Research in Intellectual Disabilities. April 23, 2018
    --- - |2+ Background The aim of this study was to examine the characteristics associated with the grieving process among a population with intellectual disability and the influence of particular variables. Materials and Methods The sample was composed of 380 participants with intellectual disability, on whose behalf 149 professionals completed a 20‐item questionnaire with four Likert‐type answer options, developed to evaluate the grieving process: Inventory of Grief and Coping Strategies in Intellectual Disability (IGCS‐ID). Results The IGCS‐ID shows adequate levels of reliability. It covers three dimensions: understanding of the concept of death, coping with the loss and post‐bereavement reactions. The level of intellectual disability, the time elapsed since the loss and the residential setting gave rise to significant differences in the three dimensions based on the participants. Conclusion An assessment of the grieving process would help to put in place effective resources to help people with intellectual disability overcome the loss and cope with the changes that it brings. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 999-1007, November 2018.
    April 23, 2018   doi: 10.1111/jar.12454   open full text
  • Predictors of success and quality of life in people with borderline intelligence: The special school label, personal and social resources.
    Grzegorz Szumski, Anna Firkowska‐Mankiewicz, Izabela Lebuda, Maciej Karwowski.
    Journal of Applied Research in Intellectual Disabilities. April 23, 2018
    --- - |2+ Background This longitudinal study examines the extent to which personal factors (intelligence and health status), social resources (family socioeconomic status, SES), special school placement and being labelled as a pupil with a disability in childhood predict subjective quality of life and objective life success 23 years later. Materials and Methods The sample consisted of 49 individuals with borderline intellectual functioning (BIF), 21 of whom attended special schools and were labelled as having special educational needs; the remaining 28 attended regular schools and were not labelled in this way. Results Parental SES predicted both subjective quality of life and objective successes in adult life. As hypothesized, the interaction between parental SES and placement in mainstream schools was associated with success in adulthood. Conclusion We discuss the results in light of labelling theory. Implications for educational policies and the provision of support for families of children with BIF are also considered. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1021-1031, November 2018.
    April 23, 2018   doi: 10.1111/jar.12458   open full text
  • Living apart (or) together—neighbours’ views and experiences on their relationships with neighbours with and without intellectual disabilities.
    Tessa Overmars‐Marx, Barbara Pepping, Fleur Thomése.
    Journal of Applied Research in Intellectual Disabilities. April 23, 2018
    --- - |2+ Background Neighbours play an important role in the social inclusion of people with intellectual disabilities. Neighbouring in general might help understand the social interactions between neighbours with and without intellectual disabilities. Our study focuses on gaining insight into neighbouring patterns and how people with intellectual disabilities fit in them. Method 26 interviews were conducted with 29 neighbours of people with intellectual disabilities on their norms and behaviours towards neighbours with and without disabilities. Results Four patterns were identified: feeling an outsider, fleeting contacts, individualized neighbourliness and sense of community. Discussion Participants perceived neighbours with intellectual disabilities as different: they are difficult to approach and show inappropriate behaviour. The groups shared most general perceptions, but there were differences. The first two groups mostly had fleeting encounters, whereas the last groups seemed more open to communal activities and assisting neighbours. In enhancing social inclusion, staff should be aware of these neighbouring patterns. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page 1008-1020, November 2018.
    April 23, 2018   doi: 10.1111/jar.12455   open full text
  • Editorial for special issue on sexuality.
    Glynis Murphy, Paul Withers.
    Journal of Applied Research in Intellectual Disabilities. April 23, 2018
    --- - - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    April 23, 2018   doi: 10.1111/jar.12457   open full text
  • A Q‐methodology study among caregivers of people with moderate intellectual disabilities on their clients’ health care: An example in oral health.
    A. M. Eijsink, G. Schipper, J. H. Vermaire.
    Journal of Applied Research in Intellectual Disabilities. April 10, 2018
    --- - |2+ Background People with intellectual disabilities have less favourable outcomes in—among others—oral health variables, compared to their peers without intellectual disabilities. Before being able to develop target interventions for caregivers, all their prevailing viewpoints regarding oral hygiene need to be identified. Methods This Q‐methodology study—conducted among 40 caregivers of care‐dependent Institutionalized living persons with moderate intellectual disability—used by‐person factor analysis to reveal clusters of caregivers based on the way their statements were sorted. Results A 4‐factor solution was chosen based on both the Q‐sorting and the interviews. The four factors identified were responsible and perseverant, motivated but aware of obstacles, social minded and knowledgeable and concerned and insecure. Conclusion Q‐methodology can be used to determine the different attitudes that caregivers have regarding oral health care. Developing a tool to determine into which factor caregivers should be categorized may be the next step in tailoring oral health instruction. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 915-926, September 2018.
    April 10, 2018   doi: 10.1111/jar.12451   open full text
  • An exploration of the participation of people with intellectual disabilities in research—a structured interview survey.
    Tessa Kim Frankena, Jenneken Naaldenberg, Nienke Bekkema, Henny J. M. Schrojenstein Lantman‐de Valk, Mieke Cardol, Geraline Leusink.
    Journal of Applied Research in Intellectual Disabilities. April 02, 2018
    --- - |2+ Background Even though participation of people with intellectual disabilities in research is increasingly common, there is little insight into how many people with intellectual disabilities participate, their motivations to participate and their interests regarding study results. Method Five questions were added to the Panel Living Together (PLT) survey among 508 people with intellectual disabilities. The questions aimed to gain insight into the (i) frequency of participation; (ii) methods used to participate; (iii) motivations to participate; and (iv) interests regarding study results. Results Although 73.5% (n = 347) of the respondents enjoyed their participation and 71.6% (n = 312) found it important to participate, only 11.8% (n = 60) participated in research other than PLT. Of the respondents, 61% (n = 261) indicated they wanted to be informed about study results, 29.1% (n = 148) of this group stated they wanted to compare, learn and share information. Conclusions Future research should focus on how motivations of people with intellectual disabilities to participate in inclusive research, such as “empowerment,” can be supported to facilitate their involvement in research. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 942-947, September 2018.
    April 02, 2018   doi: 10.1111/jar.12453   open full text
  • Comparisons of self and proxy report on health‐related factors in people with intellectual disability.
    Haleigh M. Scott, Susan M. Havercamp.
    Journal of Applied Research in Intellectual Disabilities. April 02, 2018
    --- - |2+ Background The intellectual disability field has learned about the lives of people with intellectual disabilities (ID), largely from the perspective of their family and caregivers. Information from caregivers has been critical to scientific advancement, especially when caregivers are engaged on behalf of individuals with significant language impairment. On the other hand, the perspective of individuals with ID themselves is critical for internal subjective content such as thoughts and feelings. Methods Participants were 90 adults with ID and a proxy of their choosing. Results Overall, self and caregiver report were significantly related for subjective health but varied for physical activity, social support and stress. Conclusions These findings add to the growing literature establishing the importance of considering the self‐report of adults with ID, particularity when the subject matter focuses on internal thoughts or feelings. Clinical considerations for the use of self and proxy report are discussed. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 927-936, September 2018.
    April 02, 2018   doi: 10.1111/jar.12452   open full text
  • Oxygen uptake efficiency slope during exercise in adults with Down syndrome.
    Goncalo V. Mendonca, Afonso Borges, Sang O. Wee, Bo Fernhall.
    Journal of Applied Research in Intellectual Disabilities. March 24, 2018
    --- - |2+ Background Persons with Down syndrome (DS) have low aerobic exercise capacity. The present authors sought to compare the oxygen uptake efficiency slope (OUES) between adults with and without DS performing graded exercise testing (GXT) and to investigate its relationship with peak oxygen uptake (VO2peak) in both groups of participants. Method Twenty‐three participants with DS and 24 non‐disabled controls performed GXT with VO2 measurements. OUES was calculated from data of the first 75%, 90% and 100% GXT time. Multiple linear regression analyses were computed to explore associations between the independent (OUES and DS) and the dependent variables (VO2peak). Results VO2peak, GXT time and OUES were lower in participants with DS (p < .05). OUES and DS explained 69.3% of the variance in VO2peak. Conclusions Our findings show that OUES values are lower in persons with DS. Additionally, it was shown that OUES has predictive value for VO2peak estimations in DS. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 897-904, September 2018.
    March 24, 2018   doi: 10.1111/jar.12449   open full text
  • Medical Certificates of Cause of Death for people with intellectual disabilities: A systematic literature review.
    Fred Dunwoodie Stirton, Pauline Heslop.
    Journal of Applied Research in Intellectual Disabilities. March 24, 2018
    --- - |2+ Background Mortality studies can help reduce health inequalities by informing public policy through a better understanding of causes of death and comorbidities. Mortality studies often rely on Medical Certificates of Cause of Death (MCCD) for data. Method A systematic review was undertaken to identify the extent and nature of issues in recording causes of death for people with intellectual disability on MCCD. Results Fifteen of the 25 articles included in the literature review raised concerns about the accuracy of MCCD in identifying the cause(s) of death of people with intellectual disability. The most frequent issues were the under‐reporting of intellectual disability on MCCD, and listing intellectual disability or an associated condition as an underlying cause of death. Conclusions Concerns about the accuracy and reliability of MCCD for people with intellectual disability raise questions about mortality data based on MCCD. Clear guidance is required from WHO for those completing MCCD for people with intellectual disability. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 659-668, September 2018.
    March 24, 2018   doi: 10.1111/jar.12448   open full text
  • Development of a cognitive behavioural therapy‐based guided self‐help intervention for adults with intellectual disability.
    Meg McQueen, Ashleigh Blinkhorn, Adam Broad, Jessica Jones, Farooq Naeem, Muhammad Ayub.
    Journal of Applied Research in Intellectual Disabilities. March 24, 2018
    --- - |2+ Background Despite strong evidence for cognitive behaviour therapy (CBT) in treating mental health, its use, thus far, has been limited for people with intellectual disabilities. This study describes a CBT‐based guided self‐help (CBT‐GSH) manual for individuals with intellectual disability, and focus groups explore the views of clinicians, therapists, support staff and managers. Material and methods Using a qualitative methodology, an expert team adapted the manual. Focus groups provided feedback, followed by thematic content analysis for modifications. Results Participants supported using the manual, with varying views about the delivery. Quality of relationships and competence of the administrator determined the best person to deliver the treatment. Heterogeneity in the intellectual disability population was a challenge to delivering manual‐based interventions. Participants made suggestions about language and organization. Conclusions Amendments were made to the manual in line with expert feedback. An evaluation is warranted to test for feasibility, delivery, acceptability and efficacy. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 885-896, September 2018.
    March 24, 2018   doi: 10.1111/jar.12447   open full text
  • Early death and causes of death of people with Down syndrome: A systematic review.
    Lisa O'Leary, Laura Hughes‐McCormack, Kirsty Dunn, Sally‐Ann Cooper.
    Journal of Applied Research in Intellectual Disabilities. March 24, 2018
    --- - |2+ Background It is thought that people with Down syndrome die younger than the general population, but that survival rates are improving. Methods Five databases were searched for keywords related to intellectual disabilities, Down syndrome and mortality. Strict inclusion criteria were applied. Information from 34 selected studies was tabulated, extracted and synthesized. Results People with Down syndrome died about 28 years younger than the general population. Congenital heart anomalies, comorbidities, low birthweight, and Black and minority ethnicity influenced earlier age of death, as did younger maternal age and poorer parental education. Congenital heart anomalies and respiratory conditions were the leading causes of death, and more common than in the general population. Survival rates have improved over time, particularly for those with congenital heart anomalies. Conclusions People with Down syndrome are living longer but still die younger of different causes than the general population. More robust comparative data are needed, and ethnic differences require further study. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 687-708, September 2018.
    March 24, 2018   doi: 10.1111/jar.12446   open full text
  • Barriers faced by adults with intellectual disabilities who experience sexual assault: A systematic review and meta‐synthesis.
    Connie McGilloway, David Smith, Rose Galvin.
    Journal of Applied Research in Intellectual Disabilities. March 13, 2018
    --- - |2+ Background Sexual violence is associated with significant morbidity and mortality. The incidence of sexual violence against adults with intellectual disability is significantly higher than in the general population. The aim of this systematic review and qualitative meta‐synthesis was to explore the barriers faced by adults with intellectual disability in reporting sexual assault from the perspective of different stakeholders. Method A systematic literature search was conducted to identify relevant studies. A hermeneutic interpretive approach was employed to review and assess the methodological quality of the studies. Findings were meta‐synthesized and juxtaposed to identify themes, concepts and interpretations. Results Thirteen studies were included. Three overarching themes emerged from an interpersonal, professional and social context, and within these domains, eight subthemes emerged as barriers to reporting sexual assault, including fear, communication, sexual knowledge and understanding, intellectual disability identification, lack of collaboration between service providers, presumption of capacity/credibility, lack of resources, myths and misconceptions. Conclusion The research demonstrates that deficiencies in communication and collaboration among agencies, a lack of appropriate legislation and specific training needs and education programmes are significant barriers in the reporting of sexual assault by people with intellectual disability. These findings are not unique to adults with intellectual disability and have also been identified among people from the general population who experience sexual assault. However, adults with intellectual disability have additional barriers to overcome in order to access equal rights to healthcare, education and the legal system. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    March 13, 2018   doi: 10.1111/jar.12445   open full text
  • Psychometric properties of the Spanish version of the family‐centred practices scale for use with families of young children receiving early childhood intervention.
    Joana M. Mas, Marga Cañadas, Anna Balcells‐Balcells, Climent Giné, Ana M. Serrano, Carl J. Dunst.
    Journal of Applied Research in Intellectual Disabilities. March 13, 2018
    --- - |2+ Background Early childhood intervention (ECI) centres in Spain recently initiated a process of change towards the adoption of family‐centred practices (FCPs). Knowledge about the extent to which practitioners' use FCPs is needed. The psychometric properties of the Spanish version of the FCPs scale were examined. Method A convenience sample of 105 families of children with developmental delays attending three different ECI centres in Spain completed the FCPs scale and provided information about the ECI centre characteristics and practices, caregiver self‐efficacy beliefs, and family and child demographic information. Results The Spanish version of the FCP scale was found to be both reliable and valid. FCPs were correlated with self‐efficacy beliefs, parents' involvement in their child's ECI program and family decision making. Conclusion The FCP scale provides practitioners with useful information about their practices, but also has capacity‐building consequences for families. The study is a first step for examining the use of FCPs in Spain. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 851-861, September 2018.
    March 13, 2018   doi: 10.1111/jar.12442   open full text
  • 50 years with Down syndrome: A longitudinal study.
    Janet Carr, Suzanne Collins.
    Journal of Applied Research in Intellectual Disabilities. March 02, 2018
    --- - |2+ Background A population sample of people with Down syndrome, studied from infancy, has now been followed up at the age of 50 years. From the original sample of 54, there were 27 still in the study at the age of 50, all but four of the losses resulting from deaths. Methods Intelligence and language skills were tested and daily living skills assessed. Memory/cognitive deterioration was examined using two test instruments. Other aspects of the people's lives were examined via carers' reports. Results Scores on verbal tests showed little change. Those on a non‐verbal test, on self‐help skills and on both memory tests showed some decline, even when the scores of those already suffering from dementia were discounted. Conclusions At the age of 50, those not already diagnosed with dementia showed some decline on most tests. While this may include scores of people who subsequently develop dementia, it may also reflect the normal ageing process in this population. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 743-750, September 2018.
    March 02, 2018   doi: 10.1111/jar.12438   open full text
  • Managers’ views of skilled support.
    Jill Bradshaw, Julie Beadle‐Brown, Lisa Richardson, Beckie Whelton, Jennifer Leigh.
    Journal of Applied Research in Intellectual Disabilities. February 26, 2018
    --- - |2+ Background Quality of life of people with intellectual and developmental disabilities has been found to primarily depend on whether staff are providing facilitative and enabling support that helps to compensate for severity of disability. Managers have a key role in facilitating staff to provide such support. Method Qualitative interviews were conducted with 35 managers of supported accommodation services to explore service aims and the nature of, and challenges in providing, skilled support. Key themes were identified using a Thematic Networks Analysis. Results Service aims were rarely formalised, were related to the individuals supported and not to the organisation. Managers found it difficult to define skilled support, other than by reference to individuals. Practice leadership roles were challenged as a result of austerity measures. Conclusions Front‐line managers need more information and training in skilled support, with stronger leadership from senior management to provide the motivation and resources needed. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 873-884, September 2018.
    February 26, 2018   doi: 10.1111/jar.12444   open full text
  • Training staff to promote self‐management in people with intellectual disabilities.
    Janice Sandjojo, Aglaia M. E. E. Zedlitz, Winifred A. Gebhardt, Joop Hoekman, Elise Dusseldorp, Jeanet A. Haan, Andrea W. M. Evers.
    Journal of Applied Research in Intellectual Disabilities. February 26, 2018
    --- - |2+ Background People with intellectual disabilities have increasing difficulties managing their daily affairs. This study examined the effectiveness of a staff training, which teaches staff to promote self‐management in people with intellectual disabilities. Method Effectiveness was assessed with questionnaires addressing clients’ (n = 26) independence and self‐reliance, support needs and challenging behaviour, using a pre–posttest control group design. Additionally, focus groups were conducted with trained staff members 6 months after the training. Results In the long term, the intervention group showed a significant increase in independence and self‐reliance, in contrast to the comparison group. No effect was found on support needs and challenging behaviour. Trained staff members reported limited benefits of the training, but had noticed changes in their attitude and method of working afterwards. Conclusions Further self‐management research is required to investigate how independence and self‐reliance can be promoted more effectively in this population. Future trainings should carefully consider their content, format, and implementation. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 840-850, September 2018.
    February 26, 2018   doi: 10.1111/jar.12440   open full text
  • Loneliness in people with intellectual and developmental disorders across the lifespan: A systematic review of prevalence and interventions.
    Petroutsou Alexandra, Hassiotis Angela, Afia Ali.
    Journal of Applied Research in Intellectual Disabilities. February 14, 2018
    --- - |2+ Background The aim of the study was to conduct the first systematic review investigating the prevalence of loneliness in people with intellectual developmental disabilities (IDD) and the interventions targeting loneliness. Method A search across five databases was conducted (May 2016–June 2016). One reviewer (A. P.) selected the articles for inclusion and assessed their risk of bias using a standardized tool. The second reviewer (A. H.) examined the list of included/excluded articles and the ratings of the studies. Results Five prevalence studies met the inclusion criteria and provided an average loneliness prevalence of 44.74%. Only one intervention study was included, and it demonstrated that there was not any significant group difference for loneliness outcomes (p = .21). The majority of the studies had a weak quality rating. Conclusion The systematic review evidenced that loneliness is a common experience in people with IDD and there is a need to extend current research. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 643-658, September 2018.
    February 14, 2018   doi: 10.1111/jar.12432   open full text
  • Differential vocational rehabilitation service patterns and outcomes for transition‐age youth with autism.
    Cahit Kaya, Cheryl Hanley‐Maxwell, Fong Chan, Timothy Tansey.
    Journal of Applied Research in Intellectual Disabilities. February 14, 2018
    --- - |2+ Background It is important to investigate receipt of vocational rehabilitation (VR) services, service patterns and outcomes for youth with autism, so that limited public resources can be used more efficiently. Method This study used chi‐squared automatic interaction detector, and multivariate logistic regression analysis to investigate relationships between demographic variables, receipt of VR services and employment outcomes for transition‐age youth (TAY) with Autism. Results The results indicate that gender, education level and cash benefits are significant predictors of employment outcomes. After controlling for the effect of demographic variables, several VR services (i.e., job placement, on‐the‐job support, on‐the‐job training, maintenance, other services, information referral, and diagnostic and treatment services) were significantly associated with competitive employment. Conclusions Overall, the results indicate that job‐related services were significantly related to employment outcomes for TAY with Autism; therefore, it is important these youths are provided with more targeted job placements and supported employment services (Wehman et al., ). - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 862-872, September 2018.
    February 14, 2018   doi: 10.1111/jar.12443   open full text
  • A review of measures used in the screening, assessment and diagnosis of dementia in people with an intellectual disability.
    Karen McKenzie, Dale Metcalfe, George Murray.
    Journal of Applied Research in Intellectual Disabilities. February 09, 2018
    --- - |2+ Background The increasing number of individuals with an intellectual disability who are at risk of developing dementia highlights the need to use measures with strong psychometric properties as part of the screening, assessment and diagnostic process. Method Searches were made of clinical and good practice guidelines and English language journal articles sourced from Proquest, Web of Science and Scopus databases (up to July 2017) for tools which were designed or adapted for the purpose of helping to diagnose dementia in people with intellectual disability. Results Based on a detailed review of 81 articles and guidelines, the present authors identified 22 relevant tools (12 cognitive, 10 behaviour). These were reviewed in terms of their psychometric properties. Conclusions A number of tools were found to be available for use with people with intellectual disability; however, few were specifically standardized for this purpose which also had comprehensive information about reliability and validity. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 725-742, September 2018.
    February 09, 2018   doi: 10.1111/jar.12441   open full text
  • Irish persons with intellectual disability moving from family care to residential accommodation in a period of austerity.
    Roy McConkey, Fionnola Kelly, Sarah Craig, Fiona Keogh.
    Journal of Applied Research in Intellectual Disabilities. February 09, 2018
    --- - |2+ Background Ireland has a growing population of adult persons living with family carers, thereby increasing the demand for residential places. Simultaneously, government policy aimed to reprovision residents living in congregated settings but at a time when funding was curtailed due to the economic crisis. This study examines the movements of people into and among three types of residential options between 2009 and 2014. Method A cohort of 20,163 persons recorded on the National Intellectual Disability Database in 2009 was identified and tracked to the 2014 database. Results An estimated 200 persons per annum (@1.6% of those living with families) moved from family care although the number of places available nationally fell by 9%. Moreover, transfers of existing residents into vacated places tended to exceed those from families. Conclusions More people will have to continue living with their families and for longer if funding for new places remains curtailed. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 833-839, September 2018.
    February 09, 2018   doi: 10.1111/jar.12439   open full text
  • Brief report: Exploring the benefits of a peer‐tutored physical education programme among high school students with intellectual disability.
    Erica Gobbi, Márcia Greguol, Attilio Carraro.
    Journal of Applied Research in Intellectual Disabilities. January 29, 2018
    --- - |2+ Background The purpose of this study was to explore possible benefits of a peer‐tutored physical education programme (PTPE) in comparison with school physical education (SPE) in high school students with intellectual disability. Method Nineteen students with intellectual disabilities (15 boys, mean age 17.4 ± 1.7 years) were monitored during three PTPE and three SPE classes. A factorial RM‐ANOVA was used to test differences on objective measured physical activity (PA), enjoyment and exertion during the two conditions, considering participants’ weight condition as independent factor. Results During PTPE, participants reported higher light intensity PA, enjoyment and exertion than during SPE. Participants with overweight showed less inactive time and higher light intensity PA during PTPE than during SPE. Conclusions The peer‐tutored programme was beneficial for adolescents with intellectual disability, particularly for those in overweight condition. The higher enjoyment found during PTPE may encourage exercise participation of students with intellectual disability. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 937-941, September 2018.
    January 29, 2018   doi: 10.1111/jar.12437   open full text
  • “LEARN”ing what is important to children and young people with intellectual disabilities when they are in hospital.
    K. Oulton, D. Sell, F. Gibson.
    Journal of Applied Research in Intellectual Disabilities. January 16, 2018
    --- - |2+ Background The need to review health service provision for children and young people (CYP) with disabilities and their families in the United Kingdom has been expressed in multiple reports: the most consistent message being that services need to be tailored to meet their individual needs. Our aim was to understand the hospital‐related needs and experiences of CYP with intellectual disabilities. Method An ethnographic study of a neurosciences ward and outpatient department was conducted within a paediatric tertiary hospital setting. Results Five themes, developed using the acronym LEARN, explained what is important to CYP with intellectual disabilities in hospital: (i) little things make the biggest difference, (ii) eliminate unnecessary waiting, (iii) avoid boredom, (iv) routine and home comforts are key and (v) never assume. Conclusions It is imperative that the present authors continue to challenge the idea that it is acceptable to exclude CYP with intellectual disabilities from research because of their inability to participate. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 792-803, September 2018.
    January 16, 2018   doi: 10.1111/jar.12433   open full text
  • Assessment of job satisfaction in people with intellectual disabilities: Towards best‐practice recommendations.
    Andreas Kocman, Germain Weber.
    Journal of Applied Research in Intellectual Disabilities. December 28, 2017
    --- - |2+ Background The current body of research on job satisfaction of people with intellectual disability is based on highly diverse measures, originating both from the general population and people with intellectual disability. This heterogeneity represents a possible confounder. Best‐practice approaches for the assessment of job satisfaction are hence needed. Method Using systematic literature review, job satisfaction measures were identified and analyzed with regard to their applicability for people with intellectual disability. Identified best‐practice measures (JDI/JIGS as well as RSM‐WS) were subsequently applied in the course of a pilot study with 129 employees of sheltered workshops. Comprehension, reliability and validity were assessed. Results The three identified instruments exhibit high reliability and validity. Comprehension was sufficient for JDI and JIGS but better for RSM‐WS. Conclusions The JDI/JIGS represent a feasible measures of job satisfaction allowing for comparisons with the general population. In samples with more severe intellectual disabilities, the RSM‐WS is preferable. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 804-819, September 2018.
    December 28, 2017   doi: 10.1111/jar.12434   open full text
  • Identifying perception behaviours in people with profound intellectual and multiple disabilities.
    Miriam Roemer, Ellen Verheul, Frank Velthausz.
    Journal of Applied Research in Intellectual Disabilities. December 21, 2017
    --- - |2+ Background To support people with profound intellectual and multiple disabilities (PIMD), it is essential to understand how they experience their environment. Insight into perception behaviour may provide an entry point for improved understanding. Materials and Methods A random sample of a 30‐min video registration of five participants with PIMD was used to code behaviours per second based on an ethogram containing 157 different perception behaviours in nine categories. Results Eighty‐nine different perception behaviours were observed, of which movements with eyes, head and arms were most common. The senses used most were seeing, hearing and touching. Finally, the function of five perception patterns was established in relation to their function:awareness, focusing attention and tension regulation. Conclusions Close observation using an observation ethogram provides insight into how people with PIMD perceive their environment. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 820-832, September 2018.
    December 21, 2017   doi: 10.1111/jar.12436   open full text
  • Co‐research with adults with intellectual disability: A systematic review.
    Claudio Di Lorito, Alessandro Bosco, Linda Birt, Angela Hassiotis.
    Journal of Applied Research in Intellectual Disabilities. December 12, 2017
    --- - |2+ Background Co‐research with people with intellectual disability is a distinct form of patient and public involvement (PPI). This systematic review summarize published studies and protocols to report on the process of co‐research in social and healthcare research. Method Relevant studies were identified using electronic searches on ASSIA, PsycInfo and MedLine. Study quality was assessed, and information relevant to the process of working with co‐researchers was extracted and thematically analysed. Results Thirteen studies were retrieved. Data are reported under three themes: (i) challenges of co‐research; (ii) facilitators of co‐research; (iii) benefits of co‐research. Best practice is presented as a model of co‐research. Content analysis on 12 research protocols identified four themes related to PPI. Conclusions All stakeholders involved in co‐research with people with intellectual disability can benefit, providing there is adequate infrastructure to accommodate and empower the co‐researchers. Many current intellectual disability research projects still lack systematic involvement of PPI members. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 669-686, September 2018.
    December 12, 2017   doi: 10.1111/jar.12435   open full text
  • The added value of inclusive research.
    Jan Walmsley, Iva Strnadová, Kelley Johnson.
    Journal of Applied Research in Intellectual Disabilities. December 12, 2017
    --- - |2+ Background The study asks when does inclusive research add value? The authors argue that this is important, given the additional time and cost of co‐researching with people with intellectual disabilities. The study is situated in debates about a “second generation” of inclusive research which advocates focussing more on outcomes than process. The authors argue that this is premature, rather the authors propose that inclusive research is valuable when it helps to recognize, foster, and above all communicate the contributions people with intellectual disabilities can make. Method The authors conducted a literature review of 52 peer‐reviewed journal articles about inclusive research and analysed them.. Results The authors conclude that inclusive research adds value when there is a distinctive contribution which only co‐researchers with intellectual disabilities can make, when it highlights the contributions people with intellectual disabilities make, and when it contributes to better lives for the wider population of people with intellectual disabilities. Conclusions The authors propose a revised definition of inclusive research to replace that published by Walmsley and Johnson in 2003. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 751-759, September 2018.
    December 12, 2017   doi: 10.1111/jar.12431   open full text
  • Do individuals with intellectual disability have a lower peak heart rate and maximal oxygen uptake?
    Thessa Irena Maria Hilgenkamp, Tracy Baynard.
    Journal of Applied Research in Intellectual Disabilities. December 12, 2017
    --- - |2+ Background Individuals with intellectual disability (ID) have very low physical activity and low peak oxygen uptake (VO2peak), potentially explained by physiologically lower peak heart rates (HRpeak). Method The present authors performed a retrospective analysis of a large data set of individuals with intellectual disability (n = 100), with Down syndrome (DS) (n = 48) and without intellectual disability (n = 224) using multiple linear regression analyses, to determine if individuals with intellectual disability exhibit lower HRpeak and VO2peak than individuals without intellectual disability, controlling for age, sex and body mass index (BMI). Results Individuals with intellectual disability on average have significantly lower HRpeak and VO2peak than individuals without intellectual disability, even when controlling VO2peak for the lower HRpeak. Conclusions This study suggests potential physiological differences in individuals with intellectual disability and warrants further investigation to determine their relevance to physical activity promotion and exercise testing in individuals with intellectual disability. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 785-791, September 2018.
    December 12, 2017   doi: 10.1111/jar.12430   open full text
  • The mental health of adolescents with and without mild/moderate intellectual disabilities in England: Secondary analysis of a longitudinal cohort study.
    Chris Hatton, Eric Emerson, Janet Robertson, Susannah Baines.
    Journal of Applied Research in Intellectual Disabilities. November 24, 2017
    --- - |2+ Background Children with mild/moderate intellectual disabilities are at greater risk for mental health problems, with socio‐economic factors and adversity partly accounting for this. Fewer data are available for adolescents. Methods Secondary analysis was undertaken of the Next Steps annual panel study following a cohort through adolescence into adulthood containing self‐report mental health data up to age 16/17. Participants with mild/moderate intellectual disabilities were identified through data linkage with educational records. Results Adolescents with mild/moderate intellectual disabilities were more likely than non‐disabled peers to experience socio‐economic disadvantage and bullying. Incidence rates of mental health problems were generally not significantly different between adolescents with and without intellectual disabilities. Conclusions These findings are consistent with higher rates of persistent mental health problems beginning earlier among children with intellectual disabilities. Greater attention needs to be paid to the timecourse of mental health problems, and the impact of socio‐economic factors, family and peers on mental health. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 768-777, September 2018.
    November 24, 2017   doi: 10.1111/jar.12428   open full text
  • Constipation management in people with intellectual disability: A systematic review.
    Janet Robertson, Susannah Baines, Eric Emerson, Chris Hatton.
    Journal of Applied Research in Intellectual Disabilities. November 23, 2017
    --- - |2+ Background Constipation can lead to serious health issues and death. This systematic review summarizes international research pertaining to the management of constipation in people with intellectual disability. Method Studies published from 1990 to 2017 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests and cross‐citations. Studies were reviewed narratively in relation to identified themes. Results Eighteen studies were reviewed in relation to three themes: laxative receipt; interventions (dietary fibre, abdominal massage and macrogol); and staff issues (knowledge and training). Laxative polypharmacy was common. Studies report positive results for dietary fibre and abdominal massage although study quality was limited. Conclusion The main management response to constipation in people with intellectual disability is laxative use despite limited effectiveness. An improved evidence base is required to support the suggestion that an individualized, integrated bowel management programme may reduce constipation and associated health conditions in people with intellectual disability. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 709-724, September 2018.
    November 23, 2017   doi: 10.1111/jar.12426   open full text
  • Explicit and implicit attitudes towards people with intellectual disabilities: The role of contact and participant demographics.
    Aidan J. Murch, Tanveen Choudhury, Michelle Wilson, Eleanor Collerton, Maya Patel, Katrina Scior.
    Journal of Applied Research in Intellectual Disabilities. November 23, 2017
    --- - |2+ Background Intellectual disability research has concentrated on self‐reported explicit attitudes with little focus on implicit attitudes. Such attitudes are evaluations which occur with or without conscious awareness, respectively. This investigation examined participants’ (N = 234) attitudes towards individuals with intellectual disabilities with reference to participants’ gender, age, level of education, frequency of contact and closeness. Method UK adults completed explicit (ATTID) and implicit attitude (ST‐IAT) measures, and provided demographics via an online survey. Results Participant demographics predicted explicit attitudes—with differing cognitive, affective and behavioural associations. Contact frequency was most significant. Implicit attitudes were not predicted, evidencing implicit–explicit attitude differences. Conclusions The results encourage more implicit–explicit attitude relationship research regarding disability. The associations between demographics, contact and implicit attitudes should be explored further. Research should question whether implicit attitudes reflect participants’ true beliefs—denoting less importance to demographics—or whether they reflect wider societal values rather than individuals’ attitudes. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 778-784, September 2018.
    November 23, 2017   doi: 10.1111/jar.12429   open full text
  • Training therapists to work with people with intellectual disability in Improving Access to Psychological Therapies (IAPT) services.
    Dave Dagnan, John Masson, Richard Thwaites, Amy James, Chris Hatton.
    Journal of Applied Research in Intellectual Disabilities. November 20, 2017
    --- - |2+ Background Current policy in the England suggests that people with intellectual disabilities should, where possible, access mainstream mental health services; this should include access to mainstream therapy services. It is likely that mainstream therapists will need training and support to work with people with intellectual disabilities. Method Sixty‐eight therapists working in an English Improving Access to Psychological Therapies (IAPT) service received one‐ or 2‐day training on working with people with intellectual disabilities. Measures of confidence, general therapeutic self‐efficacy and attitudes to people with intellectual disabilities’ use of mainstream mental health services were completed pre‐training, post‐training and at 3‐month follow‐up; at which time, 12 participants were interviewed about the impact of the training on their practice. Results There was a significant positive change in all measures immediately post‐training which was maintained at 3‐month follow‐up. Conclusions Training considerations for mainstream therapists who may work with people with intellectual disabilities are discussed. - Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 5, Page 760-767, September 2018.
    November 20, 2017   doi: 10.1111/jar.12427   open full text
  • What makes generalist mental health professionals effective when working with people with an intellectual disability? A family member and support person perspective.
    Janelle Weise, Karen R. Fisher, Julian N. Trollor.
    Journal of Applied Research in Intellectual Disabilities. October 20, 2017
    Background Generalist mental health professionals are inadequately equipped to meet the rights of people with intellectual disability. A better understanding of the attributes of effective professionals may assist in the development of workforce capacity in this area. Methods Twenty‐eight family/support persons of people with intellectual disability participated in four focus groups. Thematic analysis was undertaken applying the Intellectual Disability Mental Health Core Competencies Framework. Results Participants described attributes that aligned with current professional expectations such as working together and new attributes such as differentiating between behaviour and mental health. An unexpected finding was the need for professionals to be able to infer meaning by interpreting multiple sources of information. Participants also wanted professionals to acknowledge their professional limitations and seek professional support. Conclusion Family/support persons identified a range of attributes of effective mental health professionals to support people with intellectual disability. Further research is necessary, particularly from the perspective of people with intellectual disability.
    October 20, 2017   doi: 10.1111/jar.12420   open full text
  • Factors affecting access to daily oral and dental care among adults with intellectual disabilities.
    Darren Chadwick, Melanie Chapman, Gill Davies.
    Journal of Applied Research in Intellectual Disabilities. October 17, 2017
    Background/Purpose Accessing oral health care can be more difficult for adults with intellectual disabilities with reports of poorer levels of oral health. This investigation identifies factors influencing engagement in day‐to‐day oral and dental health care for adults with intellectual disabilities. Method A survey, containing questions about facilitators and barriers to maintaining oral health and hygiene, was completed with adults with intellectual disabilities and their caregivers (N = 372). Results Data were analysed using thematic network analysis. Two global themes were identified; “Personal and lifestyle influences,” mentioned more often as barriers to oral care, included physical, sensory, cognitive, behavioural and affective factors and “social and environmental factors,” mentioned more as facilitators, included caregiver support, equipment and adaptations used and oral hygiene routine. Conclusions Numerous individual, social and environmental factors influence oral care. A coordinated organisational response is advocated involving collaboration between dental and intellectual disability services and training for caregivers and people with intellectual disabilities.
    October 17, 2017   doi: 10.1111/jar.12415   open full text
  • Families’ experiences of raising concerns in health care services: An interpretative phenomenological analysis.
    Naomi Bright, Nick Hutchinson, Peter Oakes, Dave Marsland.
    Journal of Applied Research in Intellectual Disabilities. October 10, 2017
    Background This exploratory study aimed to increase understanding of the experiences of families of people with intellectual disabilities when noticing and raising concerns in services. A qualitative design was employed. Methods Seven participants (all female) were recruited through local and national voluntary agencies; five were mothers of people with intellectual disabilities, one was the aunt and one the sister. Participants took part in semi‐structured interviews centred on their experiences of noticing and raising concerns, these were recorded and transcribed. The data were analyzed using interpretative phenomenological analysis (IPA; Smith, 1996). Results The data were grouped into three superordinate themes: the nature and importance of concerns, relationships between familes and staff and the process of raising concerns. A key and surprising finding was the importance of “the little things.” Conclusions This research highlights important implications for services such as the need to simplify the process of raising concerns, attend to the relationship with families and ensure advocacy services are identified for those without family.
    October 10, 2017   doi: 10.1111/jar.12419   open full text
  • Early death and causes of death of people with intellectual disabilities: A systematic review.
    Lisa O'Leary, Sally‐Ann Cooper, Laura Hughes‐McCormack.
    Journal of Applied Research in Intellectual Disabilities. October 06, 2017
    Background Death of people with intellectual disabilities is considered to be earlier than for the general population. Methods Databases were searched for key words on intellectual disabilities and death. Strict inclusion/exclusion criteria were used. Information was extracted from selected papers, tabulated and synthesized. Prospero registration number: CRD42015020161. Results Of 19,111 retrieved articles, 27 met criteria. Death was earlier by 20 years. It has improved in recent decades; however, the same inequality gap with the general population remains. More severe intellectual disabilities, and/or additional comorbidities rendered it shortest. Standardized mortality rates showed a greater inequality for women than men. Respiratory disease and circulatory diseases (with greater congenital and lesser ischaemic disease compared with the general population) were the main causes of death. Cancer was less common, and cancer profile differed from the general population. Some deaths are potentially avoidable. All research is from high‐income countries, and cause of death is surprisingly little investigated. Conclusions Improved health care, including anticipatory care such as health checks, and initiatives addressing most relevant lifestyle behaviours and health risks are indicated.
    October 06, 2017   doi: 10.1111/jar.12417   open full text
  • Social anxiety and parental overprotection in young adults with and without intellectual disabilities.
    Cahley Hemm, Dave Dagnan, Thomas D. Meyer.
    Journal of Applied Research in Intellectual Disabilities. October 04, 2017
    Objectives Developmental literature highlights peer relationships and parental overprotection as factors implicated in the development of social anxiety. These factors are highly prevalent in the lives of people with intellectual disabilities; however research has not examined whether these factors are associated with social anxiety for this population. Methods Twenty‐one individuals without intellectual disabilities and 21 individuals with intellectual disabilities (aged 16–24 years) completed the Social Anxiety Scale for Adolescents with follow‐up questions, the Glasgow Anxiety Scale‐Intellectual disabilities and the parental overprotection subscale of the Parental Bonding Instrument with follow‐up questions. Results Aspects of general and social anxiety were significantly greater in the intellectual disabilities group. There were no significant differences in parental overprotection between groups, however, qualitative analyses revealed differences in experiences of social anxiety and parental overprotection. Conclusions Further research into factors associated with social anxiety in people with intellectual disabilities may inform adaptations to therapies and early intervention.
    October 04, 2017   doi: 10.1111/jar.12413   open full text
  • Patterns of sport participation for youth with autism spectrum disorder and intellectual disability.
    Stephanie Ryan, Jessica Fraser‐Thomas, Jonathan A. Weiss.
    Journal of Applied Research in Intellectual Disabilities. October 04, 2017
    Background Little is known about sport participation in youth with Autism Spectrum Disorder (ASD). The current study examined sport characteristics (frequency, diversity, positive social experiences [PSE]) for youth with ASD and intellectual disability compared to youth with intellectual disability alone and explored the personal and contextual correlates of involvement. Method Parents (N = 409) completed an online survey, and multiple mediation analyses were used to examine the factors that explained the relationships between sport involvement in youth with ASD and intellectual disability. Results No significant main effects of ASD status were found for frequency or diversity, but youth with intellectual disability alone had higher scores for PSE compared to youth with ASD and intellectual disability. Sociocommunicative abilities, coach relationship and resources mediated the relationship between ASD status and PSE. Conclusions A better understanding of the factors related to sport is essential for allowing families, service providers and policy makers to improve involvement for youth with ASD.
    October 04, 2017   doi: 10.1111/jar.12414   open full text
  • Being a valuable contributor on the frontline: The self‐perception of staff in group homes for people with intellectual disability.
    Claire Quilliam, Christine Bigby, Jacinta Douglas.
    Journal of Applied Research in Intellectual Disabilities. October 04, 2017
    Background Group home frontline staff have a critical role in implementing service policies, yet research typically examines implementation issues from an organisational perspective. The aim of this study was to explore the self‐perception of frontline staff about their role in group homes for people with intellectual disability. Method Constructivist grounded theory methodology guided the study. Data were collected with frontline staff through semistructured interviews and participant observations. Coding and sorting methods were used to analyse participants’ self‐perception. Results Frontline staff felt they were valuable contributors who knew the service setting and residents well. Despite this staff felt powerless in their roles, excluded from organisational dialogue, stressed and exhausted. Conclusions Frontline staff have critical insight into service implementation although disability service organisations may limit their capacity to contribute to this. Further action could explore new ways to better nurture frontline staff engagement in organisational dialogue.
    October 04, 2017   doi: 10.1111/jar.12418   open full text
  • Development and evaluation of a manual for extended brief intervention for alcohol misuse for adults with mild to moderate intellectual disabilities living in the community: The EBI‐LD study manual.
    Christos Kouimtsidis, Katrina Scior, Gianluca Baio, Rachael Hunter, Vittoria Pezzoni, Angela Hassiotis.
    Journal of Applied Research in Intellectual Disabilities. September 05, 2017
    Background Extended brief interventions for alcohol misuse are effective in the general population. The process of manualising the first ever such intervention for people with mild to moderate intellectual disabilities in the UK is the focus of this study. Methods The manual was an adaptation of existing manuals based on Motivational Enhancement and Cognitive Behaviour Therapy and was used in a feasibility randomized controlled trial, the EBI‐LD study. The sessions were recorded and scored using an adapted version of the Yale Adherence and Competence Scale (YACS II). Feedback was provided by therapists. The trial is closed. Registered: isrctn.com; ISRCTN58783633. Results The quality of the sessions provided was rated as good. Therapists were able to cover all topics within each session. Main challenges included session duration and homework task completion. Conclusions We recommend the duration of the sessions to be extended to 40 min to accommodate carers in the session and to enhance their support in homework task completion.
    September 05, 2017   doi: 10.1111/jar.12409   open full text
  • Establishing core mental health workforce attributes for the effective mental health care of people with an intellectual disability and co‐occurring mental ill health.
    Janelle Weise, Karen R Fisher, Julian N Trollor.
    Journal of Applied Research in Intellectual Disabilities. September 05, 2017
    Background People with intellectual disability experience high rates of mental ill health but multiple barriers to access to quality mental health care. One significant barrier to access is a generalist mental health workforce that lacks capacity, and consensus on what constitutes core workforce competencies in this area. As such, the first step in developing a comprehensive strategy that addresses these barriers is to define the core mental health workforce attributes. Methods Thirty‐six intellectual disability mental health experts from across Australia participated in a modified online Delphi which aimed to reach consensus on the core attributes required of the generalist mental health workforce. At the end of each Delphi round, descriptive analyses and thematic analyses were completed. Results Consensus was reached among the participants for 102 attributes across 14 clinical domains. The results highlighted specific attributes in all areas of clinical practice, especially for communication (e.g., utilizes assistive communication technology), assessment (e.g., assess contributing factors to behaviours) and intervention (e.g., uses integrative interventions). Conclusion A comprehensive strategy is required to facilitate the generalist mental health workforce to obtain these attributes.
    September 05, 2017   doi: 10.1111/jar.12407   open full text
  • Qualitative evaluation of a physical activity health promotion programme for people with intellectual disabilities in a group home setting.
    A Dixon‐Ibarra, S Driver, M Nery‐Hurwit, H VanVolkenburg.
    Journal of Applied Research in Intellectual Disabilities. August 23, 2017
    Background There is a lack of health promotion programming designed to change the physical activity environment of the group home setting. The Menu‐Choice programme assists staff in creating physical activity goals alongside residents with intellectual disabilities and provides strategies to incorporate activity into the group home schedule. The purpose of this study was to complete a process evaluation of Menu‐Choice utilizing qualitative methods. Methods Twelve participants, who completed a 10‐week pilot intervention (n = 7 staff, mean age 42; n = 5 residents, mean age 52), participated in face‐to‐face interviews. Participants represented five group home sites involved in the intervention. Results Meta‐themes included: (i) Programme training, (ii) Programme implementation, (iii) Programme physical activity, (iv) Programme barriers, (v) Programme facilitators and (vi) Programme feedback. Conclusions Changes in programme training and simplified programme materials are needed to accommodate identified barriers for implementation. The importance of obtaining increased agency support and policy change is highlighted.
    August 23, 2017   doi: 10.1111/jar.12397   open full text
  • The transition to adulthood of young adults with IDD: Parents’ joint projects.
    Richard A. Young, Sheila K. Marshall, Tim Stainton, Jessie M. Wall, Deirdre Curle, Ma Zhu, David Munro, John Murray, Asmae El Bouhali, Filomena Parada, Anat Zaidman‐Zait.
    Journal of Applied Research in Intellectual Disabilities. August 23, 2017
    INTRODUCTION Parents have found the transition to adulthood for their sons or daughters with intellectual and/or developmental disabilities (IDD) particularly challenging. The literature has not examined how parents work together and with others in face of this transition nor has it highlighted parental goals in this process. This study used a perspective based on joint, goal‐direct action to describe the projects that Canadian parents engaged in together and with others relative to this transition. Methods Using the qualitative action‐project method, joint projects between parents and with others were identified from their conversations and followed for 6 months. Findings Three groups of projects were described: equipping the young adult for adult life, connecting for personal support and managing day‐to‐day while planning for the future. Conclusions Parents act together and with others relative to the transition to adulthood of their young adult children with IDD. These projects are complex and differ in goals, steps, resources and emotional regulation and motivation.
    August 23, 2017   doi: 10.1111/jar.12395   open full text
  • Self‐ and proxy‐rated needs in adults with mild to moderate intellectual disabilities: Perspective matters.
    Matthias Schützwohl, Elke Voß, Hans Joachim Salize, Maja Stiawa, Bernd Puschner, Andrea Koch.
    Journal of Applied Research in Intellectual Disabilities. August 23, 2017
    Background Adults with an intellectual disability should be supported according to their individual needs. The perception of need, however, is influenced by the values and expectations of the judging person. Method Using the Camberwell Assessment of Need for Adults with Developmental and Intellectual Disabilities, self‐ and proxy‐rated needs of n = 193 adults with mild to moderate intellectual disability were compared. Results Mean total needs and met needs, but not unmet needs, differed significantly between perspectives. As concerns the assessment of specific areas of need, indices revealed a complex and multifaceted pattern of agreement and disagreement. Conclusion Different viewpoints should be considered when assessing needs among adults with intellectual disability. With respect to areas other than basic, everyday areas of need, involvement of the adult with intellectual disability is strongly recommended. The assessment of mental health problems requires the involvement of clinical professionals, assessing problem behavior broad diagnostic measures beyond a standardized instrument.
    August 23, 2017   doi: 10.1111/jar.12399   open full text
  • Healthy lifestyle behaviours for people with intellectual disabilities: An exploration of organizational barriers and enablers.
    Lisa O'Leary, Laurence Taggart, Wendy Cousins.
    Journal of Applied Research in Intellectual Disabilities. August 23, 2017
    Background The health‐related behaviours of people with intellectual disabilities may be determined by organisational influences. This innovative study aimed to explore managers’ and staffs’ perspectives on organisational influences on the promotion of healthy behaviours for this population. Method A qualitative methodology was employed. Four focus groups with staff and eleven telephone interviews with managers were undertaken across three residential services in one region (Northern Ireland) of the UK. Transcripts were analysed thematically. Findings The organisations involved in this study did not have the cultural ethos or capacity to sustain consistent support for staff involvement in health promotion. Organisational support and outcome‐focused strategies are recommended for encouraging staff involvement in health promotion activities. Conclusion These findings have implications for some organisations that support people with intellectual disabilities in improving the way they facilitate health promotion. They highlight the need for organisational cultures to facilitate knowledge translation and embrace evidence‐based health promotion interventions.
    August 23, 2017   doi: 10.1111/jar.12396   open full text
  • Genetic testing in intellectual disability psychiatry: Opinions and practices of UK child and intellectual disability psychiatrists.
    Kate Wolfe, Kerstin Stueber, Andrew McQuillin, Fatima Jichi, Christine Patch, Frances Flinter, André Strydom, Nick Bass.
    Journal of Applied Research in Intellectual Disabilities. August 23, 2017
    Background An increasing number of genetic causes of intellectual disabilities (ID) are identifiable by clinical genetic testing, offering the prospect of bespoke patient management. However, little is known about the practices of psychiatrists and their views on genetic testing. Method We undertook an online survey of 215 psychiatrists, who were contacted via the Royal College of Psychiatrist's Child and Adolescent and Intellectual Disability Psychiatry mailing lists. Results In comparison with child and adolescent psychiatrists, intellectual disability psychiatrists ordered more genetic tests, referred more patients to genetic services, and were overall more confident in the genetic testing process. Respondents tended to agree that genetic diagnoses can help patient management; however, management changes were infrequently found in clinical practice. Conclusions Differences are apparent in the existing views and practices of child and adolescent and intellectual disability psychiatrists. Developing training and collaboration with colleagues working in genetic services could help to reduce discrepancies and improve clinical practice.
    August 23, 2017   doi: 10.1111/jar.12391   open full text
  • Prediction of energy expenditure during walking in adults with down syndrome.
    Stamatis Agiovlasitis, Goncalo V. Mendonca, Jeffrey A. McCubbin, Bo Fernhall.
    Journal of Applied Research in Intellectual Disabilities. August 16, 2017
    Background When developing walking programmes for improving health in adults with Down syndrome (DS), physical activity professionals are in need of an equation for predicting energy expenditure. We therefore developed and cross‐validated an equation for predicting the rate of oxygen uptake (VO2; an index of energy expenditure) for adults with and without DS. Method A total of 469 VO2 observations during walking across different speeds were available from 54 adults with DS and 61 adults without DS. Results Significant predictors of VO2 were speed, speed square, group and group‐by‐speed interaction. Separate models for each group showed that speed and its square significantly predicted VO2. Absolute per cent error was small and did not differ between groups. Conclusion Adults with DS have different VO2 response to walking speed from persons without DS. VO2 is predicted from speed with acceptable accuracy for persons with DS.
    August 16, 2017   doi: 10.1111/jar.12392   open full text
  • How to facilitate transition to adulthood? Innovative solutions from parents of young adults with profound intellectual disability.
    Camille Gauthier‐Boudreault, Mélanie Couture, Frances Gallagher.
    Journal of Applied Research in Intellectual Disabilities. August 16, 2017
    Background At age 21, access to specialised services for youth with profound intellectual disability is reduced. Few studies have focused on parents' views concerning potential solutions to ease the transition to adulthood, and most existing solutions target young adults with less severe intellectual disability. The aim of this study is to propose realistic solutions to meet the needs of young adults with profound intellectual disability and their families during and after the transition to adulthood. Method Using a descriptive qualitative design, two individual semi‐structured interviews were conducted with 14 parents. Results Ideas for innovative solutions included responses to parents' informational, material, intellectual and emotional needs during and after transition period. The majority of these solutions involve knowledge sharing, improved inter‐institutional collaboration and social participation of young adults, and offering parents emotional support. Conclusion Some solutions could be implemented within existing transition planning programs, based on their strengths and limitations.
    August 16, 2017   doi: 10.1111/jar.12394   open full text
  • Identifying conceptualizations and theories of change embedded in interventions to facilitate community participation for people with intellectual disability: A scoping review.
    Christine Bigby, Sian Anderson, Nadine Cameron.
    Journal of Applied Research in Intellectual Disabilities. August 11, 2017
    Background Little progress has been made towards community participation of people with intellectual disability despite it being a policy aim since the 1980s. We aimed to identify the features of programmes designed to support community participation. Method A scoping review was conducted of peer‐reviewed literature between 2000 and 2015, about interventions to support community participation for adults with intellectual disability. Results A small body of evidence relates to the design and effectiveness of interventions to enhance community participation. Seventeen studies reported programmes reflecting three conceptualizations of community participation (as social relationships, as convivial encounter and as belonging) that used strategies such as active mentoring, facilitative support worker practice and arts‐based programmes. Conclusions Studies showed the diverse and person‐centred nature of community participation and demonstrated the need for larger‐scale studies of promising interventions that include details of costs, and strategies to guide implementation of policies to support community participation.
    August 11, 2017   doi: 10.1111/jar.12390   open full text
  • Lifestyle factors and Alzheimer's disease in people with Down syndrome.
    Athena V. Kenshole, Deanna Gallichan, Sabine Pahl, John Clibbens.
    Journal of Applied Research in Intellectual Disabilities. July 30, 2017
    Background Lifestyle has previously been associated with the onset of Alzheimer's disease (AD) in the typically developing population, but research investigating this association in Down syndrome (DS) is limited. Method Adults with DS and AD (n = 27) were compared to adults with DS without AD (n = 30) on physical activity, diet, weight, where participants currently lived, where participants had lived for the majority of their lives, educational attainment, occupational attainment and cognitive activity. Results There was a significant difference between samples on where participants currently lived, with the majority of the clinical sample living in institutionalized settings and the majority of the control sample living in independent/supported living settings. This may reflect a tendency to move people once they start to deteriorate which, if correct, is contrary to clinical recommendations that people with AD should be supported to “die in place.” Conclusions Further research into the way in which lifestyle factors, particularly living environment, could contribute to the increased risk of AD in adults with DS is required. This may support interventions aimed at preventing or delaying the onset of the disease.
    July 30, 2017   doi: 10.1111/jar.12369   open full text
  • Internet and cell phone usage patterns among young adults with intellectual disabilities.
    Cristina Jenaro, Noelia Flores, Maribel Cruz, Ma Carmen Pérez, Vanessa Vega, Víctor A Torres.
    Journal of Applied Research in Intellectual Disabilities. July 24, 2017
    Background The risks and opportunities associated with the use of technologies are of growing research interest. Patterns of technology usage illuminate these opportunities and risks. However, no studies have assessed the usage patterns (frequency, duration, and intensity) and related factors in young people with intellectual disabilities. Methods Questionnaires on Internet and cell phone usage patterns, the Internet Over‐Use Scale and the Cell‐Phone Over‐Use Scale, as well as the Beck Depression Inventory were filled out in one‐on‐one interviews of 216 youth with intellectual disabilities. Results Young people with disabilities make more social and recreational rather than educational use of these tools, and show higher rates of excessive use of both technologies than a comparison group of 410 young people without disabilities. Also, their overuse is associated with other unhealthy behaviors. Conclusion The framework of support needs of people with disabilities should be considered to promote healthy Internet and cell phone use.
    July 24, 2017   doi: 10.1111/jar.12388   open full text
  • Management and prevalence of long‐term conditions in primary health care for adults with intellectual disabilities compared with the general population: A population‐based cohort study.
    Sally‐Ann Cooper, Laura Hughes‐McCormack, Nicola Greenlaw, Alex McConnachie, Linda Allan, Marion Baltzer, Laura McArthur, Angela Henderson, Craig Melville, Paula McSkimming, Jill Morrison.
    Journal of Applied Research in Intellectual Disabilities. July 20, 2017
    Background In the UK, general practitioners/family physicians receive pay for performance on management of long‐term conditions, according to best‐practice indicators. Method Management of long‐term conditions was compared between 721 adults with intellectual disabilities and the general population (n = 764,672). Prevalence of long‐term conditions was determined, and associated factors were investigated via logistic regression analyses. Results Adults with intellectual disabilities received significantly poorer management of all long‐term conditions on 38/57 (66.7%) indicators. Achievement was high (75.1%–100%) for only 19.6% of adults with intellectual disabilities, compared with 76.8% of the general population. Adults with intellectual disabilities had higher rates of epilepsy, psychosis, hypothyroidism, asthma, diabetes and heart failure. There were no clear associations with neighbourhood deprivation. Conclusions Adults with intellectual disabilities receive poorer care, despite conditions being more prevalent. The imperative now is to find practical, implementable means of supporting the challenges that general practices face in delivering equitable care.
    July 20, 2017   doi: 10.1111/jar.12386   open full text
  • Disconnected lives: Women with intellectual disabilities in conflict with the law.
    Kathryn Ann Levine, Jocelyn Proulx, Karen Schwartz.
    Journal of Applied Research in Intellectual Disabilities. July 18, 2017
    Background Women with intellectual/developmental disabilities in conflict with the law experience childhood trauma, substance abuse and intimate partner violence but continue to have difficulty accessing appropriate therapeutic services, both within correctional settings and upon discharge. The aim of this study is to explore women's service needs and to critically assess whether the available services are meeting their identified needs. Method Semi‐structured interviews were conducted with 16 women with intellectual/developmental disabilities who were in the Special Needs Unit of a women's correctional centre from December 2014 to March 2015. Results Women with intellectual/developmental disabilities struggle to manage the impact of intergenerational trauma, exacerbated by issues of substance abuse and addiction, poor coping skills and minimal education, all of which impact their sense of well‐being. Conclusions This study highlights the need for increasing trauma treatment for women with intellectual/developmental disabilities, and emphasizes the need for accessible intervention to facilitate coping, trauma processing and community integration.
    July 18, 2017   doi: 10.1111/jar.12387   open full text
  • Relation between working memory and self‐regulation capacities and the level of social skills acquisition in people with moderate intellectual disability.
    Bojan Dučić, Milica Gligorović, Svetlana Kaljača.
    Journal of Applied Research in Intellectual Disabilities. July 14, 2017
    Background Social competence deficit is one of the main characteristics of intellectual disability. The aim of this paper is to determine the influence of working memory (WM) and self‐regulation (SR) on social skills in persons with moderate intellectual disability (MID). Method The sample included 41 participants with MID, aged 14‐21. Memorizing animals and maze tasks were used for WM assessment. SR skills were assessed by the Behavioral Multitask Batteries. Social skills were rated by the Socialization subscale from the Adaptive Behavior Assessment System II, which consists of two parts. Results Social skills part could mainly be predicted from SR scores (β = −.441), followed by WM (β = .390) and IQ score (β = .382). Only WM score (β = .494) had a predictive value for Leisure time part. Conclusion As WM had a greater influence on social skills, incorporating WM training into programmes for improving social skills in persons with MID should be considered.
    July 14, 2017   doi: 10.1111/jar.12385   open full text
  • Effectiveness of speech therapy in adults with intellectual disabilities.
    Hayo Terband, Marjolein C. Coppens‐Hofman, Maaike Reffeltrath, Ben A. M. Maassen.
    Journal of Applied Research in Intellectual Disabilities. July 10, 2017
    Background This study investigated the effect of speech therapy in a heterogeneous group of adults with intellectual disability. Method Thirty‐six adults with mild and moderate intellectual disabilities (IQs 40–70; age 18–40 years) with reported poor speech intelligibility received tailored training in articulation and listening skills delivered in two 3‐month periods. Pre‐ to post‐changes in speech intelligibility and receptive vocabulary were assessed using standardized tasks. Results The results showed a positive effect of treatment on speech intelligibility and receptive vocabulary, irrespective of severity of intellectual disability, hearing loss and intellectual disability aetiology. Conclusions Speech therapy for people with intellectual disability can be effective at adult age and hearing loss should not prevent treatment. Continued attention to speech can help augment verbal communication skills in this population.
    July 10, 2017   doi: 10.1111/jar.12384   open full text
  • Unpacking the complexity of planning with persons with cognitive disability and complex support needs.
    Susan Collings, Angela Dew, Leanne Dowse.
    Journal of Applied Research in Intellectual Disabilities. July 03, 2017
    Background Planners will engage with people with cognitive disability and complex support needs in the Australian National Disability Insurance Scheme, but the specific skills needed to build sustainable plans with this group are not yet known. Method A qualitative study was conducted to explore the barriers and facilitators to planning with people with cognitive disability and complex support needs. Focus groups were held with 99 planning practitioners across metropolitan and regional locations in New South Wales, Australia. Results Thematic analysis showed planners need to build a partnership based on mutual trust and respect with a person with complex support needs and harness a range of skills to respond to individual support needs, learning capacity, systemic hurdles and life challenges. Conclusions Planner skills can be used to address barriers to planning for people with cognitive disability and complex support needs. Gaining skills took professional support and personal commitment.
    July 03, 2017   doi: 10.1111/jar.12381   open full text
  • “What's going to happen when we're gone?” Family caregiving capacity for older people with an intellectual disability in Ireland.
    Damien Brennan, Rebecca Murphy, Philip McCallion, Mary McCarron.
    Journal of Applied Research in Intellectual Disabilities. June 30, 2017
    Background Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability. Method A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing. Results The traditional sociodemographic facilitators of family caregiving are in rapid decline. Families perceived limited support from services and limited future care options. Few future care plans have been formulated. A strong possibility exists of placement of older family members with an intellectual disability in out‐of‐family home care. Conclusion To anticipate and provide for quality care supports, there is a need to establish proactive initiatives, for both people with an intellectual disability and their families’, to facilitate the early formation of long‐term care plans.
    June 30, 2017   doi: 10.1111/jar.12379   open full text
  • Peer‐reviewed articles on inclusive research: Do co‐researchers with intellectual disabilities have a voice?
    Iva Strnadová, Jan Walmsley.
    Journal of Applied Research in Intellectual Disabilities. June 22, 2017
    Background Inclusive research is increasingly common in intellectual disabilities research, but ways in which voice of co‐researchers with intellectual disabilities is presented remain underexplored in the literature. Materials and Method The authors conducted a literature review and analysis of peer‐reviewed journal articles reporting on inclusive research. The aim was to explore the ways the voices of co‐researchers with intellectual disabilities are represented in published peer‐reviewed journal articles. Results The findings indicate that there are a wide range of ways in which inclusive research projects are reported in peer‐reviewed journals. However, the experiences, views and opinions of co‐researchers are often either absent or very selectively reported. Conclusions The article concludes that although inclusive research has proliferated in the 21st century, more attention needs to be paid to the ways in which the voices of co‐researchers with intellectual disabilities are heard in formal academic contexts. Guidelines for future practice are offered.
    June 22, 2017   doi: 10.1111/jar.12378   open full text
  • An integrative review of multicomponent weight management interventions for adults with intellectual disabilities.
    Alison J. Doherty, Stephanie P. Jones, Umesh Chauhan, Josephine M. E. Gibson.
    Journal of Applied Research in Intellectual Disabilities. June 20, 2017
    Background Obesity is more prevalent in people with intellectual disabilities and increases the risk of developing serious medical conditions. UK guidance recommends multicomponent weight management interventions (MCIs), tailored for different population groups. Methods An integrative review utilizing systematic review methodology was conducted to identify the types of MCIs delivered to adults with intellectual disabilities. Findings Five studies were identified. All of the studies' MCIs were tailored for adults with intellectual disabilities. Tailoring included measures such as simplified communication tools, individualized sessions, and the presence of carers where appropriate. Conclusions Emerging evidence suggests ways in which MCIs can be tailored for adults with intellectual disabilities but, given the few studies identified, it is not possible to recommend how they can be routinely tailored. Further studies are justified for adults with intellectual disabilities at risk of obesity‐related conditions.
    June 20, 2017   doi: 10.1111/jar.12367   open full text
  • “They just said inappropriate contact.” What do service users hear when staff talk about sex and relationships?
    Nici Grace, Beth Greenhill, Paul Withers.
    Journal of Applied Research in Intellectual Disabilities. June 06, 2017
    --- - |2+ Background Research into how people with intellectual disabilities (ID) pursue intimate relationships in care settings presents some contradictory findings; despite increasingly liberal staff views, service users experience significant restrictions. This study attempts to explore this gap within a secure hospital, examining service user's representations of staff discourses about sexuality and intimate relationships. Method Semi‐structured interviews with eight service users with intellectual disability were analysed using critical discourse analysis. Results Analysis enabled construction of 11 themes falling into three categories. Dominant discourses appeared to maintain the integrity of the institution, enable staff to occupy a position of power and demonstrate service users’ responses to perceived control. Conclusions Discourses around sex appear to serve the interests of staff and the hospital, while being restrictive and often incomprehensible to service users. Implications for service development, and future research directions, are considered in the context of “Transforming Care.” - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    June 06, 2017   doi: 10.1111/jar.12373   open full text
  • The Employers’ perspective on barriers and facilitators to employment of people with intellectual disability: A differential mixed‐method approach.
    Andreas Kocman, Linda Fischer, Germain Weber.
    Journal of Applied Research in Intellectual Disabilities. June 06, 2017
    Background Obtaining employment is among the most important ambitions of people with intellectual disability. Progress towards comprehensive inclusive employment is hampered by numerous barriers. Limited research is available on these barriers and strategies to overcome them. Method A mixed method approach in a sample of 30 HR‐managers was used to assess (i) differences in perceived barriers for employment of people with specific disabilities and mental disorders; (ii) barriers specific to employing people with intellectual disability; (iii) strategies to overcome these barriers. Results Employers perceive more barriers for hiring people with intellectual disability and mental disorders than for physical disabilities. Employment for this population is hampered by a perceived lack of skills and legal issues. Strategies perceived as beneficial are supplying information, changes in organizational strategies and legal changes. Conclusions Employers’ differentiated expectations and reservations towards hiring individuals with specific disabilities need to be taken into account to increase employment for people with intellectual disability.
    June 06, 2017   doi: 10.1111/jar.12375   open full text
  • A systematic review of the evidence regarding cognitive therapy skills that assist cognitive behavioural therapy in adults who have an intellectual disability.
    Patricia Cooney, Conall Tunney, Gary O'Reilly.
    Journal of Applied Research in Intellectual Disabilities. May 24, 2017
    Background Cognitive behavioural therapy (CBT) is being increasingly adapted for use with people who have an intellectual disability. However, it remains unclear whether inherent cognitive deficits that are present in adults who have an intellectual disability preclude the use of cognitive‐based therapies. This review aims to systematically examine “cognitive therapy skills” in adults who have an intellectual disability that assist engagement in CBT. Method Two authors independently reviewed titles and abstracts of articles located through electronic database searching. Results Outcomes of the 18 studies selected for full‐text review are mixed and limited by a moderately high risk of bias. Conclusions The authors suggest eleven findings from research areas of emotion recognition, cognitive mediation, discriminating between thoughts, feelings and behaviours, linking events and emotions that have implications for the design of CBT programmes and future research for this population.
    May 24, 2017   doi: 10.1111/jar.12365   open full text
  • Improving the occupational skills of students with intellectual disability by applying video prompting combined with dance pads.
    Mei‐Lan Lin, Ming‐Shan Chiang, Ching‐Hsiang Shih, Meng‐Fang Li.
    Journal of Applied Research in Intellectual Disabilities. May 24, 2017
    Background Individuals with intellectual disability (ID) are prone to inattention, are slow in learning and reaction, and have deficits in memory skills. Providing proper vocational education and training for individuals with intellectual disability is able to enhance their occupational skills. Materials and Methods This study applied video prompting to provide instructional prompts to help participants accurately perform an assigned occupational activity. A control system installed with developed software was used to turn a standard dance pad into a sensor to detect the participants’ standing position and to automatically trigger video prompting. Results The results show that the participants’ correct performance of the target behaviour improved significantly after their exposure to the video prompting intervention, and this positive outcome remained consistent during the maintenance phase. Conclusion Video prompting combined with dance pads was a feasible approach to improving the occupational skills of the three students with intellectual disability.
    May 24, 2017   doi: 10.1111/jar.12368   open full text
  • Prevalence and potential factors associated with overweight and obesity status in adults with intellectual developmental disorders.
    Sobhana Ranjan, Jennifer A. Nasser, Kathleen Fisher.
    Journal of Applied Research in Intellectual Disabilities. May 24, 2017
    Background The prevalence of being overweight and obese is increasing not just in the general population but also in individuals with intellectual disability (ID). Therefore, a need to identify factors contributing to overweight/obesity arises as this population is escalating. Materials and Methods This narrative review article summarizes pertinent research focusing on prevalence and the potential factors associated with overweight and obesity in adults with intellectual disability during the past decade. Results Prevalence of being overweight and obese among adults with intellectual disability is reportedly 28%‐71% and 17%‐43%, respectively. Factors increasing the susceptibility of being overweight or obese have been identified as female gender, increasing age, having a certain diagnosis, mild intellectual disability, as well as living independently/with family, consuming certain prescription medications, and non‐participation in physical activities. Conclusion Identification of the potential risk factors associated with being overweight and obese in this population will help tackle the challenges faced by this growing adult population with intellectual disability.
    May 24, 2017   doi: 10.1111/jar.12370   open full text
  • Protection and restriction: A mixed‐methods study of self‐reported well‐being among youth with intellectual disabilities.
    Petra Boström, Malin Broberg.
    Journal of Applied Research in Intellectual Disabilities. May 19, 2017
    Background As most mental health studies of school‐aged children with intellectual and developmental disabilities (IDD) are based on proxy ratings, the subjective views of these young persons are rarely explored. The present study explores experiences of well‐being, mental ill‐health, family, school, and peer relations in students in special education. Methods Ten students in special education, aged 13–16 years, answered the Wellbeing in Special Education Questionnaire (WellSEQ) and participated in semi‐structured interviews. Data were analyzed using a mixed methods phenomenological research approach. Results The general agreement between questionnaire responses and interview accounts appears to be good, and the students emphasized mainly positive emotions and good mental health. Students described their school environment and family relations as inclusive contexts experienced as both protective and restrictive. Conclusion Using well‐adapted research instruments enables students with IDD to communicate subjective experiences of well‐being and how it relates to aspects of their everyday environment.
    May 19, 2017   doi: 10.1111/jar.12364   open full text
  • The effect of brief digital interventions on attitudes to intellectual disability: Results from a pilot study.
    Natalie Lindau, Tara Amin, Amy Zambon, Katrina Scior.
    Journal of Applied Research in Intellectual Disabilities. May 15, 2017
    Background Evidence on the effects of contact and education based interventions on attitudes is limited in the intellectual disability field. This study compared the effects of brief interventions with different education, indirect and imagined contact components on lay people's attitudes. Materials and Methods 401 adult participants were randomised to six digital brief interventions consisting of different combinations of education, indirect and imagined contact. Their attitudes, intergroup anxiety and social distance were assessed post‐intervention and at four to six‐week follow‐up. Results An intervention combining film‐based education about intellectual disability and indirect contact had small positive effects on all three outcomes. Social distance was further reduced with the addition of a positively toned imagined contact task. These effects were maintained at follow‐up. Conclusions A brief film‐based digital intervention can have small positive effects on attitudes to people with intellectual disabilities. These may be enhanced by adding positive imagined contact.
    May 15, 2017   doi: 10.1111/jar.12366   open full text
  • Community football teams for people with intellectual disabilities in secure settings: “They take you off the ward, it was like a nice day, and then you get like medals at the end”.
    Nicholas Andrew Hudson, Jennifer Hella Mrozik, Rose White, Kristian Northend, Steve Moore, Katherine Lister, Kelly Rayner.
    Journal of Applied Research in Intellectual Disabilities. May 15, 2017
    Background People with learning disabilities (LD) are particularly vulnerable to mental health and behavioural difficulties, and it has been shown that regular exercise can improve psychosocial well‐being as well as physical fitness. This research aims to explore the experiences of men with LD detained in secure settings who have engaged in community football training programmes and identify the benefits of such provision. Method Interviews were conducted with eight patients in a forensic LD service, discussing their experiences of participating in community football. Template analysis was undertaken on the transcripts. Results Two master themes were identified: physical fitness and psychosocial benefits. As the analysis progressed, new emerging themes were identified around role identity and achievement, as well as extending and refining some of the themes from the original template including fun and belonging. Some anticipated themes were removed from the template entirely. Conclusion The psychosocial benefits of organised community sports programmes far outweigh the physical health benefits. Careful consideration must be given to where on a treatment and rehabilitation pathway non‐traditional therapeutic interventions such as sports programmes are offered as an adjunct to specific risk reduction interventions for people with LD in secure settings.
    May 15, 2017   doi: 10.1111/jar.12359   open full text
  • Social networks of adults with an intellectual disability from South Asian and White communities in the United Kingdom: A comparison.
    Anjali K. Bhardwaj, Rachel V. E. Forrester‐Jones, Glynis H. Murphy.
    Journal of Applied Research in Intellectual Disabilities. May 15, 2017
    Background Little research exists comparing the social networks of people with intellectual disability (ID) from South Asian and White backgrounds. This UK study reports on the barriers that South Asian people with intellectual disability face in relation to social inclusion compared to their White counterparts. Materials and methods A mixed‐methods research design was adopted to explore the social lives of 27 men (15 White; 12 South Asian) and 20 women (10 White; 10 South Asian with intellectual disability). Descriptive and parametric tests were used to analyse the quantitative data. Results The average network size of the whole group was 32 members. South Asian participants had more family members whilst White participants had more service users and staff in their networks; 96% network members from White intellectual disability group were also of White background, whilst the South Asian group had mixed ethnic network members. Conclusions Social networks of individuals with intellectual disability in this study were found to be larger overall in comparison with previous studies, whilst network structure differed between the White and South Asian population. These differences have implications relating to future service planning and appropriateness of available facilities.
    May 15, 2017   doi: 10.1111/jar.12351   open full text
  • Hospital admissions for physical health conditions for people with intellectual disabilities: Systematic review.
    Kirsty Dunn, Laura Hughes‐McCormack, Sally‐Ann Cooper.
    Journal of Applied Research in Intellectual Disabilities. May 03, 2017
    Background People with intellectual disabilities may have inequalities in hospital admissions compared with the general population. The present authors aimed to investigate admissions for physical health conditions in this population. Methods The present authors conducted a systematic review, searching six databases using terms on intellectual disabilities and hospital admission. Papers were selected based on pre‐defined inclusion/exclusion criteria, data extracted, tabulated and synthesized and quality assessed. PROSPERO registration number: CRD42015020575. Results Seven of 29,613 papers were included. There were more admissions, and a different pattern of admissions (more medical and dental), for people with intellectual disabilities, but most studies did not take account of higher disease prevalence. Three papers considered admissions for ambulatory care‐sensitive conditions, two of which accounted for disease prevalence (asthma, diabetes) and found higher admission rates for people with intellectual disabilities. Conclusion Admissions are common. Asthma and diabetes admission data suggest suboptimal primary health care for people with intellectual disabilities compared with the general population, but evidence is limited.
    May 03, 2017   doi: 10.1111/jar.12360   open full text
  • Knowledge and expectations of direct support professionals towards effects of psychotropic drug use in people with intellectual disabilities.
    Gerda Kuijper, Annette A. J. Putten.
    Journal of Applied Research in Intellectual Disabilities. May 03, 2017
    Background/Introduction In this study, we investigated intellectual disability support professionals’ knowledge and expectations towards effects of psychotropic drug use on behaviour and drug use in their clients, because shortcomings may lead to misinterpretations of behavioural symptoms and inappropriate drug use. Methods Two self‐designed questionnaires were used to measure the knowledge and expectations of 194 support professionals in 14 residential facilities regarding psychotropic drug use and effects of antipsychotics on behavioural, cognitive and mental functioning of people with intellectual disability. The psychometric properties of both questionnaires were adequate. Results A majority of the professionals had unrealistic expectations regarding the positive effects of antipsychotics on cognitive and behavioural functioning, and 94% scored below the cut‐off scores regarding knowledge; 60% indicated they needed education and training. Conclusions To achieve sufficient collaboration of intellectual disability support professionals in reducing inappropriate psychotropic drug use of clients, vocational educational training is needed.
    May 03, 2017   doi: 10.1111/jar.12357   open full text
  • Whoever shouts the loudest: Listening to parents of children with disabilities.
    Christian Ryan, Elizabeth Quinlan.
    Journal of Applied Research in Intellectual Disabilities. April 12, 2017
    Background Elevated stress is common among parents of children with disabilities. The parents’ perspective and evaluation of services have a significant impact on their well‐being and adaptation to their child's disability and is a source of information for service improvements. This study explores parental perceptions of communication and collaboration between parents and health and education staff in the context of an imminent reconfiguration of disability services. Methods A qualitative study was conducted using four focus groups with parents (n = 24) of children with disabilities who attend various educational and health services. Results Thematic analysis revealed five key themes: Us versus them, lack of child/family centeredness, resources, keyworker and uncertain access to a complex system. Conclusions Parents want greater collaboration between parents and professionals. They identified a keyworker as a potential solution to the current system that is not child‐centred. This would also lessen the burden associated with high levels of advocacy.
    April 12, 2017   doi: 10.1111/jar.12354   open full text
  • Physical and psychological health of family carers co‐residing with an adult relative with an intellectual disability.
    Jillian M. Grey, Vasiliki Totsika, Richard P. Hastings.
    Journal of Applied Research in Intellectual Disabilities. April 05, 2017
    Background Providing long‐term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well‐being. Methods Data were collected via online and postal questionnaires on 110 family carers’ physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers’ satisfaction with available support were also examined. Results Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio‐economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring. Conclusions Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population‐based, longitudinal research is needed.
    April 05, 2017   doi: 10.1111/jar.12353   open full text
  • Educators’ evaluations of children's ideas on the social exclusion of classmates with intellectual and learning disabilities.
    Elizabeth A Nowicki, Jason D Brown, Lynn Dare.
    Journal of Applied Research in Intellectual Disabilities. April 04, 2017
    Background Reasons underlying the social exclusion of children with intellectual or learning disabilities are not entirely understood. Although it is important to heed the voices of children on this issue, it is also important to consider the degree to which these ideas are informed. The present authors invited educators to evaluate the content of children's ideas on the causes of social exclusion. Method Educators thematically sorted and rated children's ideas on why classmates with intellectual or learning disabilities are socially excluded. Sorted data were analysed with multidimensional scaling and hierarchical cluster analysis. Results Six thematic clusters were identified differing in content to those provided by children in an earlier study. Educators generally rated children's ideas as showing somewhat uninformed ideas about why social exclusion occurs. Conclusions Educators indicated that children need to be better informed about intellectual and learning disabilities. Limitations and implications are discussed.
    April 04, 2017   doi: 10.1111/jar.12356   open full text
  • Experiences of going to court: Witnesses with intellectual disabilities and their carers speak up.
    Tessy Beckene, Rachel Forrester‐Jones, Glynis H. Murphy.
    Journal of Applied Research in Intellectual Disabilities. March 31, 2017
    --- - |2+ Background People with intellectual disabilities are more vulnerable to sexual abuse and are more disadvantaged in the criminal justice system than the general population. However, little is known about the experiences of people with intellectual disabilities who have allegedly been victims of sexual abuse and also been witnesses in court. Materials and Methods This study used semi‐structured interviews and a Grounded Theory approach to examine the experiences of four people with intellectual disabilities and four carers/supporters who had all attended trials. Results Findings showed that after the traumatic incident of abuse, a court experience could become a secondary source of trauma. Experience of this trauma was dependent on the quality and quantity of support people received and the understanding of intellectual disabilities amongst the legal participants. Conclusion The findings argue for better training for legal participants who are in contact with vulnerable witnesses and better support structures for alleged victims. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    March 31, 2017   doi: 10.1111/jar.12334   open full text
  • Eye movement desensitisation and reprocessing therapy for posttraumatic stress disorder in a child and an adolescent with mild to borderline intellectual disability: A multiple baseline across subjects study.
    Liesbeth Mevissen, Robert Didden, Hubert Korzilius, Ad Jongh.
    Journal of Applied Research in Intellectual Disabilities. March 26, 2017
    Background This study explored the effectiveness of eye movement desensitisation and reprocessing (EMDR) therapy for post‐traumatic stress disorder (PTSD) in persons with mild to borderline intellectual disability (MBID) using a multiple baseline across subjects design. Methods One child and one adolescent with MBID, who met diagnostic criteria for PTSD according to a PTSD clinical interview (i.e., ADIS‐C PTSD section), adapted and validated for this target group, were offered four sessions of EMDR. PTSD symptoms were measured before, during and after EMDR, and at six weeks follow‐up. Results For both participants, number of PTSD symptoms decreased in response to treatment and both no longer met PTSD criteria at post‐treatment. This result was maintained at 6‐week follow‐up. Conclusions The results of this study add further support to the notion that EMDR can be an effective treatment for PTSD in children and adolescents with MBID. Replication of this study in larger samples and using a randomized controlled design is warranted.
    March 26, 2017   doi: 10.1111/jar.12335   open full text
  • A systematic review of the effectiveness of psychological approaches in the treatment of sex offenders with intellectual disabilities.
    Emma Jones, Eddie Chaplin.
    Journal of Applied Research in Intellectual Disabilities. March 23, 2017
    --- - |2+ Background Despite considerable advance and growth in the evidence base for psychological interventions as treatment for sex offenders with intellectual disabilities (ID), there remains limited evidence to support their effectiveness. This systematic review seeks to evaluate the effectiveness of psychological interventions on reducing reoffending rates for sex offenders with ID. Methods A search of ten electronic databases, grey literature and reference lists was conducted using PRISMA methodology. Results A number of studies appeared to establish positive treatment outcomes, demonstrated by improvements in attitudinal change, victim empathy and sexual knowledge. However, reductions in sexual reoffending during the follow‐up period were not consistent across the studies. No studies with an adequate control comparison were identified during the search. Conclusions The current review provides limited evidence on the effectiveness of psychological interventions for sex offenders with ID, while also highlighting the need for further research. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    March 23, 2017   doi: 10.1111/jar.12345   open full text
  • “With a Touch of a Button”: Staff perceptions on integrating technology in an Irish service provider for people with intellectual disabilities.
    Stacy Clifford Simplican, Carolyn Shivers, June Chen, Geraldine Leader.
    Journal of Applied Research in Intellectual Disabilities. March 23, 2017
    Background People with intellectual disabilities continue to underutilize technology, in part due to insufficient training. Because support staff professionals provide instructional support, how they perceive integrating new technologies is important for people with intellectual disabilities. Method The authors conducted a sequential mixed‐methods exploratory study (quan→QUAL) including quantitative data from online surveys completed by 46 staff members and qualitative data from five focus groups attended by 39 staff members. Results Quantitative results show strong support for diverse technologies. In contrast, qualitative results suggest that staff members’ support of technology decreases when they perceive that technology may jeopardize service users’ safety or independence. Conclusions Although staff members identified increasing independence as the main reason to use new technologies with service users, they also worried that technologies used to increase the social inclusion of service users may pose undue risk and thus may limit their embrace of technology.
    March 23, 2017   doi: 10.1111/jar.12350   open full text
  • Interpersonal relationships of older adults with an intellectual disability in Ireland.
    Darren McCausland, Philip McCallion, Damien Brennan, Mary McCarron.
    Journal of Applied Research in Intellectual Disabilities. March 23, 2017
    Background People with intellectual disability tend to have smaller social networks than other groups, with even those living in community‐based residences comparatively worse off. Materials and methods Analysis of data from the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS‐TILDA) (n = 701) examined measures of interpersonal relationships and interactions. Predictors of family contact and having non‐resident friends were also explored. Results Social networks of older people with intellectual disability differ considerably from the general older population, with a reliance on support staff and co‐resident friends in place of their own immediate family structures and wider friendships. Proximity to family most strongly predicted family contact. Residence in independent or family residences was most strongly linked to having non‐resident friends. Conclusions While family proximity and community living are associated with improved social networks and contacts, older people with intellectual disability remain worse off than the general older population.
    March 23, 2017   doi: 10.1111/jar.12352   open full text
  • Weight management in adults with intellectual and developmental disabilities: A randomized controlled trial of two dietary approaches.
    Lauren T Ptomey, Richard R Saunders, Muriel Saunders, Richard A Washburn, Matthew S Mayo, Debra K Sullivan, Cheryl A Gibson, Jeannine R Goetz, Jeff J Honas, Erik A Willis, Jessica C Danon, Ron Krebill, Joseph E Donnelly.
    Journal of Applied Research in Intellectual Disabilities. March 23, 2017
    Background The prevalence of obesity among individuals with intellectual and developmental disabilities (IDD) is equal to or greater than the general population. Methods Overweight/obese adults (BMI ≥25 kg/m2) with mild‐to‐moderate intellectual and developmental disabilities were randomized to an enhanced stop light diet (eSLD = SLD + portion‐controlled meals, n = 78) or a conventional diet (CD, n = 72) for an 18 months trial (6 months weight loss, 12 months maintenance). Participants were asked to increase physical activity (150 min/week), self‐monitor diet and physical activity and attend counselling/educational sessions during monthly home visits. Results Weight loss (6 months) was significantly greater in the eSLD (−7.0% ± 5.0%) compared with the CD group (−3.8% ± 5.1%, p < .001). However, at 18 months, weight loss between groups did not differ significantly (eSLD = −6.7% ± 8.3%; CD = 6.4% ± 8.6%; p = .82). Conclusion The eSLD and CD provided clinically meaningful weight loss over 18 months in adults with intellectual and developmental disabilities.
    March 23, 2017   doi: 10.1111/jar.12348   open full text
  • Early detection of dementia in people with an intellectual disability – A German pilot study.
    Bettina Kuske, Christian Wolff, Uwe Gövert, Sandra Verena Müller.
    Journal of Applied Research in Intellectual Disabilities. March 23, 2017
    Background This study investigated the application of a newly developed neuropsychological assessment, the Wolfenbütteler Dementia Test for Individuals with Intellectual Disabilities (WDTIM) in combination with the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID). Methods The instruments were evaluated in a prospective 2‐year follow‐up study. A total of 102 people with an intellectual disability were assessed at 6‐month intervals. Data were analysed using qualitative and statistical analyses. Results Four groups of individuals emerged from the analysis: (1) confirmed suspicion, (2) no suspicion, (3) questionable suspicion and (4) early suspicion. Significant differences were found between groups 1 and 2. The WDTIM could be administered to 90%–100% of all participants exhibiting mild‐to‐moderate intellectual disability and to 50% with severe intellectual disability . Conclusions The WDTIM was shown to have good applicability to people with mild‐to‐moderate intellectual disability and to be appropriate for detecting cognitive changes. Using the two instruments in combination achieved greater accuracy in reinforcing a dementia suspicion than did using the DSQIID alone.
    March 23, 2017   doi: 10.1111/jar.12347   open full text
  • Intergenerational mentoring at Men's Sheds: A feasibility study.
    Nathan J Wilson, Reinie Cordier, Marina Ciccarelli, Judith MacCallum, Benjamin Milbourn, Sharmila Vaz, Annette Joosten, Angus Buchanan, Tomomi McAuliffe, Roger J Stancliffe.
    Journal of Applied Research in Intellectual Disabilities. March 13, 2017
    Background This study reports on the feasibility of an intergenerational mentoring programme for youth with intellectual disability (ID) aimed at developing skills and building networks. Methods Youth with ID were paired with older male mentors who were trained to support the mentees participate in activities and social interactions during weekly sessions. We interviewed the mentees and mentors, and assessed them on a range of outcomes using standardized measures. Results Interviews highlighted that the programme presented a great “opportunity” for the mentees and mentors. The participants described facilitators and challenges to the acquisition of practical skills by mentees and the development of relationships between mentors and mentees, including communication, transportation and mentor training. The youth with ID had difficulty completing the self‐report measures. Conclusions Mentoring programmes are viable to support youth with ID during the transition to adulthood; however, refinement is required in the rollout out of a pilot intervention.
    March 13, 2017   doi: 10.1111/jar.12338   open full text
  • Low bone mineral density risk factors and testing patterns in institutionalized adults with intellectual and developmental disabilities.
    Mailee Hess, Elizabeth J Campagna, Kristin M Jensen.
    Journal of Applied Research in Intellectual Disabilities. March 01, 2017
    Background Adults with intellectual or developmental disability (ID/DD) have multiple risks for low bone mineral density (BMD) without formal guidelines to guide testing. We sought to identify risk factors and patterns of BMD testing among institutionalized adults with ID/DD. Methods We evaluated risk factors for low BMD (Z‐/T‐score < −1) and patterns of BMD testing among adults with ID/DD receiving care at a state‐run residential facility. Kruskal–Wallis, Fisher's exact and Pearson's chi‐squared tests were used as appropriate. Results Of the 140 eligible patients, only 44% ever had BMD testing of which 89% had low BMD. Median age at diagnosis was 42 years old. Individuals with low BMD were more likely to be older, non‐weight bearing, Caucasian and have severe cognitive delay. Conclusions Adults with ID/DD in this facility had a high prevalence of low BMD. Further studies are needed to better characterize risk factors and inform screening within this high‐risk population.
    March 01, 2017   doi: 10.1111/jar.12341   open full text
  • Feasibility of electronic peer mentoring for transition‐age youth and young adults with intellectual and developmental disabilities: Project Teens making Environment and Activity Modifications.
    Jessica M. Kramer, Cathryn T. Ryan, Rachel Moore, Ariel Schwartz.
    Journal of Applied Research in Intellectual Disabilities. March 01, 2017
    Background There is a need for mentoring interventions in which transition‐age youth and young adults with intellectual and/or developmental disabilities (I/DD) participate as both mentors and mentees. Project TEAM (Teens making Environment and Activity Modifications) is a problem‐solving intervention that includes an electronic peer‐mentoring component. Methods Forty‐two mentees and nine mentors with I/DD participated. The present authors analysed recorded peer‐mentoring calls and field notes for mentee engagement, mentor achievement of objectives and supports needed to implement peer mentoring. Results Overall, mentees attended 87% of scheduled calls and actively engaged during 94% of call objectives. Across all mentoring dyads, mentors achieved 87% of objectives and there was a significant relationship between the use of supports (mentoring script, direct supervision) and fidelity. Conclusions Transition‐age mentees with I/DD can engage in electronic peer mentoring to further practice problem‐solving skills. Mentors with I/DD can implement electronic peer mentoring when trained personnel provide supports and individualized job accommodations.
    March 01, 2017   doi: 10.1111/jar.12346   open full text
  • Health professionals working effectively with support workers to enhance the quality of support for adults with intellectual disabilities: A meta‐ethnography.
    David Haines, Alexander Brown.
    Journal of Applied Research in Intellectual Disabilities. February 22, 2017
    Background Paid support workers are often central to the quality of life of adults with intellectual disabilities. Health and social care professionals increasingly carry out interventions indirectly through those support workers and therefore need to understand how best to collaborate. Methods This article synthesizes findings from the qualitative research of others investigating health professionals' work with support staff. From sixty‐two articles retrieved from a database and journal search, seven met inclusion criteria and a meta‐ethnographic synthesis allowed construction of an interpretive line‐of‐argument. Results Thirteen themes within the articles were synthesized into three over‐archingconstructs, suggesting that professionals should collaborate by providing effective leadership, working in partnership with support workers and managers and recognizing the influence of organizational structures and context. Conclusions As these constructs seem reflective of important components of teamwork, a “line‐of‐argument” is proposed that it could be helpful for professionals to view themselves as part of a “team” with support workers.
    February 22, 2017   doi: 10.1111/jar.12343   open full text
  • Improving vision awareness in autism services: Evaluation of a dedicated education programme for support practitioners.
    Joseph J. Long, Maggie Butchart, Michael Brown, Janice Bain, Anne McMillan, Thanos Karatzias.
    Journal of Applied Research in Intellectual Disabilities. February 20, 2017
    Background The research reported here sought to evaluate whether a dedicated education programme in vision awareness improved the knowledge and skills of autism support practitioners in identifying visual impairment in autistic people with intellectual disabilities and providing better support to those individuals identified as visually impaired. Methods Researchers undertook a mixed methods evaluation. A survey questionnaire was devised and administered before and after training and focus groups were undertaken in order to gain qualitative data relating how practitioners implemented their learning in practice. Results Knowledge confidence and practice confidence scores of participants were significantly improved by the programme, which maintained its impact one year on. Practitioners reported increased access to optometry, changes to support practice and improvements to service environments as a result of the training. Conclusion Autism support practitioners’ skills in identifying and supporting people with visual impairments were demonstrably enhanced through dedicated vision training.
    February 20, 2017   doi: 10.1111/jar.12330   open full text
  • Effects of mindfulness‐based intervention to improve task performance for children with intellectual disabilities.
    Jeongil Kim, Miyoung Kwon.
    Journal of Applied Research in Intellectual Disabilities. February 16, 2017
    Background Task performance is a critical factor for learning in individuals with intellectual disabilities. This study aimed to examine mindfulness‐based intervention (MBI) to improve task performance for children with intellectual disability (ID). Methods Three elementary school children with ID participated in the study. A multiple baseline design across subjects was used. The intervention was consisted of “understanding the necessary concept of mindfulness, practice of awareness and attention, and practice focusing on mindful behaviours.” Mediating materials including expressive arts supplies were used to help each subject to understand the content and the progress of the intervention programme. Results The results showed that all of the three subjects showed an improvement in task performance and a decrease in task‐avoidance behaviours. The mothers reported that her children's daily life behaviours were distinctively improved as he/she participated in the intervention. Conclusion The finding suggests that MBI would be a valuable adjunct to a wide range of applications to support individuals with ID to learn a variety of adaptive behaviour.
    February 16, 2017   doi: 10.1111/jar.12333   open full text
  • Validity of proxy‐reported height and weight to derive body mass index in adults participating in Special Olympics.
    Kristin Dobranowski, Meghann Lloyd, Pierre Côté, Robert Balogh.
    Journal of Applied Research in Intellectual Disabilities. February 16, 2017
    Background Overweight and obesity are common in adults with intellectual disabilities, which complicates their health. To meet their health needs, individuals with intellectual disability frequently rely on proxies to answer questions on their behalf. In the general population, the use of proxy‐reported height and weight to compute body mass index (BMI) has been validated, but not among adults with intellectual disability. The objective of this study was to determine the accuracy of proxy‐reported height, weight and derived BMI among adults with intellectual disability. Methods Proxies were asked to report height and weight on behalf of adults with intellectual disability who participate in Special Olympics Ontario; their answers were compared to measured height and weight. Results Proxies reported height and weight accurately; the sensitivity of proxy reports for classifying individuals with intellectual disability as overweight and/or obese was 84.6%. Conclusion Proxy reports may be useful when direct measurements of individuals with intellectual disability are not available.
    February 16, 2017   doi: 10.1111/jar.12332   open full text
  • Parental psychopathology and expectations for the futures of children with autism spectrum disorder.
    Paul Andrew Thomas, Jake S King, Jenna L Mendelson, Rosemery O Nelson‐Gray.
    Journal of Applied Research in Intellectual Disabilities. February 16, 2017
    Background The influence of parental psychopathology and parental expectations on child well‐being is well documented among typically developing populations. However, to date little research has examined the relationship among these factors in families of children with autism spectrum disorder (ASD). This study examines an observed relationship between parental psychopathology and expectations in families with children with ASD in the light of research in other populations. Method Twenty‐four parents of children diagnosed with ASD were assessed for symptoms of psychopathology. Parents completed measures of child ASD severity as well as their expectations for possible outcomes of their child. Results Two main effects were found: higher parental psychopathology and ASD severity were both related to lower expectations. Interaction of ASD severity and parental psychopathology in relation to parent expectations was not observed. Conclusion These results emphasize the necessity of providing services not only to individuals diagnosed with ASD, but to caregivers as well.
    February 16, 2017   doi: 10.1111/jar.12337   open full text
  • Photovoice in research involving people with intellectual disabilities: A guided photovoice approach as an alternative.
    Tessa Overmars‐Marx, Fleur Thomése, Xavier Moonen.
    Journal of Applied Research in Intellectual Disabilities. January 24, 2017
    Background In studies involving people with intellectual disabilities, photovoice is increasingly used to include the voice of participants. Analysing existing literature, the present authors found that photovoice was used in various forms with different outcomes. These studies describe both obstructing and facilitating factors. The present authors designed a more standardized approach of photovoice and developed an alternative strategy: “guided photovoice.” Method The “guided photovoice” approach was tested on fourteen participants with intellectual disabilities. The outcomes of the approach were evaluated. Results The effectiveness of the approach varied with the participants’ capabilities and needs. Some participants were talked more while taking photographs, others told their story easily during the interviews. The use of follow‐up questions was helpful to deepen the interview. Conclusions A more standardized, guided photovoice approach is a helpful addition to the various options for using photovoice; it is important to decide which approach best fits the needs and capabilities of the participants.
    January 24, 2017   doi: 10.1111/jar.12329   open full text
  • Effects of detraining on anthropometry, aerobic capacity and functional ability in adults with Down syndrome.
    PH Boer.
    Journal of Applied Research in Intellectual Disabilities. January 24, 2017
    Background Structured exercise has shown to improve parameters of functional fitness in adults with Down syndrome (DS). However, few, if any, continue to exercise after exercise intervention studies. Consequently, the purpose of this study was to determine the effects of detraining on anthropometry, aerobic capacity and functional ability of adults with DS. Methods In a previous study, forty‐two participants either performed 12 weeks of interval training, continuous aerobic training or no training (CON). After 3 months of detraining, the same participants were tested again for anthropometry, aerobic capacity, leg strength and functional ability. Results Significant reductions in maximal aerobic capacity, time to exhaustion and both functional test items were reported for both exercise groups compared to CON (p < .05). No significant differences were reported between the exercise groups concerning aerobic and functional capacity reductions. Conclusion Detraining occurred significantly in both exercise groups regarding parameters associated with aerobic and functional capacity.
    January 24, 2017   doi: 10.1111/jar.12327   open full text
  • The experiences of high intensity therapists delivering cognitive behavioural therapy to people with intellectual disabilities.
    Hayley Marwood, Deborah Chinn, Kenneth Gannon, Katrina Scior.
    Journal of Applied Research in Intellectual Disabilities. January 24, 2017
    Background People with intellectual disabilities (ID) should be able to access the Improving Access to Psychological Therapies (IAPT) programme, currently a main provider of mainstream mental health services in England. IAPT offer cognitive behavioural therapy (CBT) to individuals experiencing mental health problems, although its effectiveness for people with ID, when delivered within IAPT, is unclear. Method Ten high‐intensity therapists took part in semi‐structured interviews, analysed using thematic analysis, regarding their experiences of delivering CBT to people with ID in IAPT. Results The rigidity of the IAPT model appears to offer a poor fit with the needs of people with ID. Therapists appeared uncertain about how to modify CBT and highlighted training and service development needs. Conclusions Findings suggest barriers to accessing IAPT largely remain unaddressed where people with ID are concerned. Services may need to reconsider what constitutes appropriate reasonable adjustments to ensure equitable access.
    January 24, 2017   doi: 10.1111/jar.12328   open full text
  • Health knowledge and the impact of social exclusion on young people with intellectual disabilities.
    Jaycee Pownall, Sarah Wilson, Andrew Jahoda.
    Journal of Applied Research in Intellectual Disabilities. January 24, 2017
    --- - |2+ Background Cognitive impairments are often assumed to underlie individuals’ difficulties with understanding health issues. However, it was predicted that socially excluded individuals would have greater difficulty gaining understanding of sensitive topics related to sexuality than other public health messages, such as alcohol use. Method The health knowledge of 31 typically developing young people, 29 young people with mild intellectual disabilities (ID) and 23 participants with physical disabilities but no cognitive impairments was compared. Results The largest group differences were related to more private and personal health issues, such as pregnancy/contraception. Both groups of young people with disabilities had less knowledge of pregnancy/contraception than their non‐disabled peers. Thus, deficits in this sexual knowledge did not just appear to be the result of cognitive deficits. Conclusions The findings suggest social exclusion may contribute to young people with intellectual disabilities’ poorer knowledge of pregnancy and contraception. The results have implications for interventions. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    January 24, 2017   doi: 10.1111/jar.12331   open full text
  • A qualitative exploration of participants’ experiences of taking part in a walking programme: Perceived benefits, barriers, choices and use of intervention resources.
    Fiona Mitchell, Kirsten Stalker, Lynsay Matthews, Nanette Mutrie, Chris Melling, Alex McConnachie, Heather Murray, Craig A. Melville.
    Journal of Applied Research in Intellectual Disabilities. December 22, 2016
    Background Adults with intellectual disabilities (ID) experience significant inequalities and tend to be more sedentary and less physically active than the wider population. Walking programmes are an effective way to increase physical activity (PA) but have not been used in studies involving adults with intellectual disabilities. Method Nineteen adults with intellectual disabilities participated in semistructured interviews or focus groups exploring their experiences of taking part in a walking programme (Walk Well). Data were coded using thematic analysis. Results Four overarching themes emerged: perceived benefits of taking part in the programme, perceived drawbacks/ barriers, walking choices and using the Walk Well resources. While there was not a significant increase in walking for all, the participants reported positive experiences of taking part in the programme. Self‐monitoring proved difficult for some, particularly reading the daily step count recorded on the pedometer and writing it in the diary. Carers also played an important role in facilitating and preventing behaviour change in adults with intellectual disabilities. Conclusion Additional barriers prevent many adults with intellectual disabilities from participating in PA. Capturing participant experiences provides important information for designing effective and equitable health improvement programmes.
    December 22, 2016   doi: 10.1111/jar.12326   open full text
  • Conceptualizing and Treating Social Anxiety in Autism Spectrum Disorder: A Focus Group Study with Multidisciplinary Professionals.
    Debbie Spain, Freya Rumball, Lucy O'Neill, Jacqueline Sin, Jonathan Prunty, Francesca Happé.
    Journal of Applied Research in Intellectual Disabilities. December 21, 2016
    Background Individuals who have autism spectrum disorders (ASD) commonly experience social anxiety (SA). Disentangling SA symptoms from core ASD characteristics is complex, partly due to diagnostic overshadowing and co‐occurring alexithymia. Causal and maintaining mechanisms for SA in ASD are underexplored, but it is feasible that there is an ASD specificity to the clinical presentation, with implications for the development of targeted treatments. Methods Five focus groups were conducted with multidisciplinary professionals to investigate their perspectives about, and approaches to, working with individuals with ASD and SA. Data were analysed thematically. Results Data analysis revealed two overarching themes: conceptualizing SA in ASD and service provision. Our results suggest that adaptations to service provision are pertinent, so as to accommodate inherent impairments that can mediate assessment and intervention. Conclusions Future studies should establish how aspects of the care pathway can be improved for individuals with ASD and SA.
    December 21, 2016   doi: 10.1111/jar.12320   open full text
  • Evaluation of a Social Network Intervention for People with Mild to Borderline Intellectual Disabilities.
    A. E. Asselt‐Goverts, P. J. C. M. Embregts, A. H. C. Hendriks.
    Journal of Applied Research in Intellectual Disabilities. December 21, 2016
    Background Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support workers evaluate the intervention? What did they learn from it? Were there any changes in network characteristics, satisfaction and wishes in relation to networks, participation, loneliness, self‐determination or self‐esteem? Method The evaluation of the intervention was explored from several perspectives (i.e. five clients, their six support workers and three trainers), using mixed methods (i.e. interviews and questionnaires). Results The intervention was positively evaluated by both clients and support workers. Moreover, the analysis revealed the vulnerability of clients and their networks but also the benefits experienced from the intervention, such as decreased loneliness, enhanced social networks, increased awareness, competence, autonomy and increased participation. Conclusion The indicative level of evidence for the effectiveness of this intervention justifies a larger series of case studies or a larger control trial study.
    December 21, 2016   doi: 10.1111/jar.12318   open full text
  • Leveraging Social Capital of Individuals with Intellectual Disabilities through Participation on Facebook.
    Carmit‐Noa Shpigelman.
    Journal of Applied Research in Intellectual Disabilities. December 21, 2016
    Background Participation in social networking sites has considerable potential to leverage the individual's social capital, including persons with intellectual disabilities, whose real‐world social networks are fairly limited. Method This study aimed to understand how individuals with intellectual disabilities use Facebook to access social capital benefits, if at all. Qualitative interviews and observations were conducted with 20 adult Facebook users with intellectual disabilities. Results The online participation enhanced their bonding social capital as well as contributed to their psychological well‐being through increasing their online visibility, popularity and sense of belonging. At the same time, they experienced stress and frustration due to usage difficulties, which prevented them from enhancing their bridging social capital. Conclusions Participation in social networking sites may also leverage bridging social capital of persons with intellectual disabilities, but they need a more accessible platform and ongoing support to ensure safe and fruitful participation.
    December 21, 2016   doi: 10.1111/jar.12321   open full text
  • Quantitative Measurement of Communication Ability in Children with Angelman Syndrome.
    Joseph C. Grieco, Ruth H. Bahr, Mike R. Schoenberg, Laura Conover, Lauren N. Mackie, Edwin J. Weeber.
    Journal of Applied Research in Intellectual Disabilities. December 19, 2016
    Background Angelman syndrome is a rare disorder in which most individuals do not develop speech. Testing of communication ability using traditional neuropsychological measures reveals a performance level at or near the floor of the instrument resulting in an inability to detect change when experimental therapeutics are applied. Methods Nine individuals, with molecularly confirmed AS, ranging in age from 34 to 126 months, and a single healthy control child (age 16 months) were audio and video‐recorded while interacting with a licensed speech‐language pathologist in an attempt to elicit vocalization and non‐verbal communication. Thirty‐minute audio recordings were transcribed and categorized per the Stark Assessment of Early Vocal Development‐Revised and a phonetic inventory was created. Using video recordings, gestures were classified by function, either behavioral regulation or social interaction and further categorized as deictic or representational (i.e., behavioral regulation) and joint attention or shared engagement (i.e., social interaction). Results The range of vocalizations produced by the children with AS was characteristic of children between 0–6 months and none of the children with AS used advanced forms of vocalizations. The mean frequency of reflexive vocalizations, control of phonation and expansion far exceeded the number of uses of canonical syllables, consistant with the characteristics of children around 12 months of age. Most vocalizations were either laughter or isolated vowels, only three children with AS produced consonant‐vowel combinations. Children with AS tended to use central and low vowels with few producing high vowels, suggesting the presence of childhood apraxia of speech. Conclusion Our results show the utilization of video‐recorded behavioral observations provides a feasible and reliable alternative for quantification of communication ability in this patient population and may be employed during future clinical studies of potential therapeutics.
    December 19, 2016   doi: 10.1111/jar.12305   open full text
  • ‘Shutting the World Out’: An Interpretative Phenomenological Analysis Exploring the Paternal Experience of Parenting a Young Adult with a Developmental Disability.
    Lisa A. Thackeray, Virginia Eatough.
    Journal of Applied Research in Intellectual Disabilities. December 19, 2016
    Background An in‐depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19–32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10). Method Five fathers participated in semi‐structured interviews which were subjected to interpretative phenomenological analysis (Smith, Flowers and Larkin, 2009, Interpretative Phenomenological Analysis: Theory, Method, and Research. London: Sage). Results The final thematic structure comprises four inter‐related themes. They demonstrate a high degree of concern for children's well‐being; the joy adult children confers on their father's lives as well as the difficulties men experience in response to the limited opportunities available to their offspring. Importantly findings also illustrate the way in which men struggle to contend with painful emotions. Conclusions Societal conceptions of masculinity, fatherhood and disability necessarily influence the way fathers experience the world (Yarwood, Fathering, 9, 2011, 150). It is imperative that service providers recognize the particular challenges faced by fathers, seeking ways to better engage and support them.
    December 19, 2016   doi: 10.1111/jar.12313   open full text
  • An Independent Investigation of the Utility of the Learning Disability Screening Questionnaire (LDSQ) within a Community Learning Disability Team.
    Steven Stirk, Bryony Field, Jessica Black.
    Journal of Applied Research in Intellectual Disabilities. December 19, 2016
    Background The Learning Disability Screening Questionnaire (LDSQ) has been shown to have high sensitivity and specificity to identify those who are likely to meet intellectual disability diagnostic criteria (McKenzie, et al. ). However, there is no independent research to date to support these findings. Materials and Methods An archival research design was used, utilizing data from diagnostic tools including the LDSQ, Wechsler Adult Intelligence assessments and Adaptive Behavior Assessment System Second Edition (ABAS‐II) scores. Results Sensitivity and specificity values derived here were lower than those reported by (McKenzie, et al. ). Only IQ, not adaptive/social functioning, was found to be an accurate predictor of the LDSQ score. Conclusions Results indicate limited validity in using (McKenzie, et al. ) proposed cut‐off scores. The authors have expressed caution around using the LDSQ in isolation to identify those with an intellectual disability.
    December 19, 2016   doi: 10.1111/jar.12316   open full text
  • Parents’ Opinions about an Intervention to Manage Repetitive Behaviours in Young Children with Autism Spectrum Disorder: A Qualitative Study.
    Anna R. Hodgson, Victoria Grahame, Deborah Garland, Fiona Gaultier, Jan Lecouturier, Ann Le Couteur.
    Journal of Applied Research in Intellectual Disabilities. December 19, 2016
    Background Early intervention for autism spectrum disorder (ASD) tends to focus on enhancing social communication skills. We report data collected via focus group discussions as part of a feasibility and acceptability pilot randomized controlled trial (RCT) about a new parent group intervention to manage restricted and repetitive behaviours (RRB) in young children with ASD. Methods The focus groups were led by two independent facilitators and followed a semi‐structured topic guide with the aim of considering three key topics: experiences of participating in a RCT, opinions about the intervention and the impact of the intervention on the participants, their children and the family. Results Fourteen participants attended the focus groups. Most participants reported that they had little knowledge of RRB before attending the intervention and that it had had a positive impact on them, their children and their family. Conclusion The findings support the view that there is an unmet need for a parent‐mediated intervention focusing on RRB.
    December 19, 2016   doi: 10.1111/jar.12317   open full text
  • Development and Testing of a Screener for Intelligence and Learning Disabilities (SCIL).
    Henk Nijman, Hendrien Kaal, Lesley Scheppingen, Xavier Moonen.
    Journal of Applied Research in Intellectual Disabilities. December 07, 2016
    Background Many clients in contact with social services and (mental) health care have mild to borderline intellectual disabilities (MBID). Yet, administering a full intelligence test may not be feasible. Method In 318 adults and 305 juveniles, the scores on 14 questions that comprise the screener for intelligence and learning disabilities (SCIL) were analysed in relation to the IQs of the participants. Results The SCIL score had good predictive validity for detecting MBID in adults (AUC = 0.93). A cut‐off score of 19 or lower is recommended to detect (a suspicion of) MBID. Test–retest reliability of the SCIL was 0.92. In juveniles, AUC values were 0.91 for 16‐ to 17‐year‐olds, 0.90 for 14‐ to 15‐year‐olds and 0.83 for 12‐ to 13‐year‐olds. Conclusions The SCIL appears to be a time‐efficient tool for screening for MBID in adults (18+) and juveniles of 14 years or older.
    December 07, 2016   doi: 10.1111/jar.12310   open full text
  • Identification and Analysis of Factors Contributing to the Reduction in Seclusion and Restraint for a Population with Intellectual Disability.
    Caroline Larue, Marie‐Hélène Goulet, Marie‐Josée Prevost, Alexandre Dumais, Jacques Bellavance.
    Journal of Applied Research in Intellectual Disabilities. December 02, 2016
    Background A cohort of 11 patients with an intellectual disability and a psychiatric diagnosis present severe behavioural disorders in psychiatric hospital of Quebec in 2009. Control‐measure use for this clientele has now been reduced. How do management personnel, families and care teams explain the changes? What clinical interventions did management and care providers implement that contributed to the reduction? Method A retrospective case study was conducted. Five focus groups were held with people involved in their care, and the patient files were examined. Results The factors contributing to this change were the cohesion of the care providers, the involvement of the families and the efforts to determine the function of the behaviour. Implications This study may inspire other care teams to try new approaches in dealing with patients with severe behavioural disorders. Also, the model of factors and interventions supporting a reduction in seclusion and restraint measures may inspire future studies.
    December 02, 2016   doi: 10.1111/jar.12309   open full text
  • The Relationship Between Intelligence Quotient and Aspects of Everyday Functioning and Participation for People Who Have Mild and Borderline Intellectual Disabilities.
    Patrik Arvidsson, Mats Granlund.
    Journal of Applied Research in Intellectual Disabilities. December 01, 2016
    Background This study explored the relationship between intelligence quotient (IQ) and aspects of everyday functioning/participation in individuals (age 16–40) who have a mild/borderline intellectual disability (IQ 55–85). Method Correlations were examined between IQ and (i) self‐rated (n = 72) ability, participation as performance (how often an activity is performed), important participation restriction (not/seldom performing an activity perceived as important) and general well‐being and (ii) proxy‐rated (n = 41) ability and participation as performance. Results No significant correlations between IQ and any of the explored measures were found. However, the effect sizes of the correlations between IQ and ability were considered as small but not negligible. Conclusions The results support the notion that IQ is a poor predictor of general aspects of everyday functioning in persons with mild/borderline intellectual disability. The result indicates that self‐ratings partly generate other information than proxy ratings which may be important for assessments of supportive requirements and diagnosis.
    December 01, 2016   doi: 10.1111/jar.12314   open full text
  • Finding the Right Assessment Measures for Young People with Intellectual Disabilities Who Display Harmful Sexual Behaviour.
    A. Malovic, G. Murphy, S. Coulton.
    Journal of Applied Research in Intellectual Disabilities. November 28, 2016
    --- - |2+ Background Previous studies and national reports have all noted that a significant proportion of the young people who display harmful sexual behaviours have intellectual disabilities. However, research on the topic has been scarce. This study presents a systematic review of the literature relating to clinical instruments specifically developed or adapted for adolescents with intellectual disabilities who display harmful sexual behaviours. Method An electronic search of databases was completed for published articles in English from the earliest possible date to the end of 2013. Results No published articles met the full search criteria. This confirmed the lack of published clinical measures, apart from two risk assessment instruments. Conclusions Given the lack of measures, it is recommended that the focus of future research needs to be on developing or adapting instruments that will offer researchers’ and clinicians’ empirical as well as clinical data on this all‐too‐often‐overlooked population of vulnerable youth. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    November 28, 2016   doi: 10.1111/jar.12299   open full text
  • The Impact of Affiliate Stigma on the Psychological Well‐Being of Mothers of Children with Specific Learning Disabilities in India: The Mediating Role of Subjective Burden.
    Gazal Banga, Subharati Ghosh.
    Journal of Applied Research in Intellectual Disabilities. November 23, 2016
    Background Knowledge of the impact of affiliate stigma on the wellbeing of caregivers to children with specific learning disability (SLD) in India is limited. To fill in this gap in knowledge a cross‐sectional quantitative study was undertaken to assess the impact of affiliate stigma on the psychological well‐being of mothers with children with SLD in India, and test the mediating role of subjective burden, using an adapted version of Pearlin's stress and adaptation model. Methods Sample included 100 mothers of children with SLD. Data was collected using a structured interview schedule. Descriptive statistics, correlation and stepwise regression were used as the primary analytic tools. Results Affiliate stigma experienced by mothers significantly predicted low levels of psychological well‐being and subjective burden mediated the relationship between affiliate stigma and psychological wellbeing. Conclusions The findings call for developing targeted interventions to address affiliate stigma and positive appraisal of the caregiving situation, with the goal of improving the psychological well‐being of mothers of children with SLD.
    November 23, 2016   doi: 10.1111/jar.12311   open full text
  • Striking the Right Balance: Police Experience, Perceptions and Use of Independent Support Persons During Interviews Involving People with Intellectual Disability.
    Marie Henshaw, Benjamin Spivak, Stuart D. M. Thomas.
    Journal of Applied Research in Intellectual Disabilities. November 23, 2016
    Background Several jurisdictions mandate the presence of an independent support person during police interviews with vulnerable people. The current study investigated police officers’ experiences and perceptions of these volunteers during interviews with people with intellectual disability(ies) (ID). Methods The sample comprised 229 police officers who attended a mandatory firearms training course in Melbourne, Australia, in 2010. Results Participants commonly reported utilizing independent support persons and displayed a fair understanding of their role. Overall, volunteers were engaged more frequently than family/friends; police considered the volunteers to be more impartial during interviews, whereas family/friends provided a greater level of emotional support to interviewees. Conclusions Independent support persons need to demonstrate two quite different types of support to people with intellectual disability(ies) during police interviews; these require quite different skill sets and suggest the need for more tailored training and support for these volunteers. Implications for future research and policy are discussed.
    November 23, 2016   doi: 10.1111/jar.12297   open full text
  • Developing an Easy Read Version of the Adult Social Care Outcomes Toolkit (ASCOT).
    Agnes Turnpenny, James Caiels, Beckie Whelton, Lisa Richardson, Julie Beadle‐Brown, Tanya Crowther, Julien Forder, Joanna Apps, Stacey Rand.
    Journal of Applied Research in Intellectual Disabilities. October 24, 2016
    Background This study reports the experiences of developing and pre‐testing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) for self‐report by people with intellectual disabilities. Methods The study has combined survey development and pre‐testing methods with approaches to create accessible information for people with intellectual disabilities. A working group assisted researchers in identifying appropriate question formats, pictures and wording. Focus groups and cognitive interviews were conducted to test various iterations of the instrument. Results Substantial changes were made to the questionnaire, which included changes to illustrations, the wording of question stems and response options. Conclusions The process demonstrated the benefits of involving people with intellectual disabilities in the design and testing of data collection instruments. Adequately adapted questionnaires can be useful tools to collect information from people with intellectual disabilities in survey research; however, its limitations must be recognized.
    October 24, 2016   doi: 10.1111/jar.12294   open full text
  • Improving the Health and Well‐Being of Adults With Conditions of a Genetic Origin: Views from Professionals, Syndrome Support Groups and Parents.
    Marcus Redley, Merel Pannebakker, Anthony Holland.
    Journal of Applied Research in Intellectual Disabilities. October 24, 2016
    Background Advances in medical genetics herald the possibility that health and social care services could be more responsive to the needs arising from a person's genotype. This development may be particularly important for those men and women whose learning disability (known internationally as intellectual disability) is linked to a neurodevelopmental condition of genetic origin. Method This possibility is tested through interviews with samples of (i) professional ‘opinion former’ with nationally recognised clinical and/or academic interests in learning disabilities and genetics; (ii) representatives of syndrome organisations prompting the interests of families where someone has a neurodevelopmental condition, and parent‐members of these same organisations. Results The reporting and discussion of the interview data considers the possibility that notwithstanding the successes of the social model of disability, the health and wellbeing of people whose learning disability is associated with a neurodevelopmental condition could be better served by a more medicalised approach to their interests. Conclusion While a more medicalised approach to this populations’ disabilities would appear to be beneficial, so long as it is focused on interventions to improve their lives rather than catalogues their deficiencies.
    October 24, 2016   doi: 10.1111/jar.12293   open full text
  • Parent‐Related Stress of Male and Female Carers of Adolescents with Intellectual Disabilities and Carers of Children within the General Population: A Cross‐Sectional Comparison.
    Kiri A. Patton, Robert Ware, Lyn McPherson, Eric Emerson, Nicholas Lennox.
    Journal of Applied Research in Intellectual Disabilities. October 04, 2016
    Background Carers of children with intellectual disability show high rates of parent‐related stress and are at an increased risk for deleterious physical and mental health. Materials and Methods This study investigated the relationship between demographic and social characteristics and parenting stress, within two different cross‐sectional samples of carers: those who care for an adolescent with an intellectual disability and carers from a population based sample. Participants were 1152 carers from the Household Income and Labour Dynamic in Australia study and 284 carers of adolescents with intellectual disabilities from the Ask study. Results and Conclusions The results supported previous research suggesting carers of children with intellectual disabilities experience high parent‐related stress. The results also support the buffer model of social support, as high social support was related to lower parent‐related stress. Self‐rated prosperity, financial pressure and relationship status were also related to lower levels of parent‐related stress.
    October 04, 2016   doi: 10.1111/jar.12292   open full text
  • The Accuracy of Anthropometric Equations to Assess Body Fat in Adults with Down Syndrome.
    Mateus Rossato, Rodolfo André Dellagrana, Rafael Martins Costa, Ewertton de Souza Bezerra, João Otacílio Libardoni Santos, Cassiano Ricardo Rech.
    Journal of Applied Research in Intellectual Disabilities. October 04, 2016
    Background The aim of this study was to verify the accuracy of anthropometric equations to estimate the body density (BD) of adults with Down syndrome (DS), and propose new regression equations. Materials and methods Twenty‐one males (30.5 ± 9.4 years) and 17 females (27.3 ± 7.7 years) with DS participated in this study. The reference method for BD was air displacement plethysmography (ADP). Also, the BD was estimated by anthropometric equations. The body fat percentage (BF %) was estimated by the Siri equation. Results For females, the Durnin and Womersley equation showed no difference from the ADP, but a trend of underestimation was observed. For males, all equations were significantly different for the BF % from ADP. The equations developed in this study showed a high correlation and acceptable agreement with BF % from ADP in both genders. Conclusion All equations are not valid for DS adults. The new equations developed here were accurate in estimating the BF %.
    October 04, 2016   doi: 10.1111/jar.12290   open full text
  • Quality Group Home Care for Adults with Developmental Disabilities and/or Mental Health Disorders: Yearning for Understanding, Security and Freedom.
    Leah Shipton, Bonnie M. Lashewicz.
    Journal of Applied Research in Intellectual Disabilities. September 15, 2016
    Background The purpose of this study was to uncover and understand factors influencing quality of care received by adults with developmental disabilities and/or mental health disorders living in group homes. Methods The present authors conducted a secondary analysis of data from nine focus group discussions with adults with developmental disabilities and/or mental health disorders, and their family and paid caregivers (N = 52). To focus the analysis, the present authors drew on the research literature to craft a model of quality of group home care using concepts of social inclusion and self‐determination, and corresponding staff approaches that include active support and person‐centred care. Results Social inclusion and self‐determination for adults in group homes are facilitated by staff approaches and manifest in residents being understood and experiencing security and freedom. Conclusions The present authors offer recommendations for group home resources, training, communication and outcome measures that promote residents’ being understood and experiencing security and freedom.
    September 15, 2016   doi: 10.1111/jar.12289   open full text
  • Understanding Special Olympics Experiences from the Athlete Perspectives Using Photo‐Elicitation: A Qualitative Study.
    Jonathan A. Weiss, Priscilla Burnham Riosa, Suzanne Robinson, Stephanie Ryan, Ami Tint, Michelle Viecili, Jennifer A. MacMullin, Rebecca Shine.
    Journal of Applied Research in Intellectual Disabilities. September 14, 2016
    Background Many individuals with intellectual disabilities experience challenges to participating in organized sport, despite its known benefits. The aim of this qualitative study was to understand the experiences of participating in sport (Special Olympics) from the perspectives of athletes with intellectual disabilities. Methods Five participants (13‐33 years of age) took part in a photo‐elicitation project during a 1‐month period. Results Our thematic analysis of participant photographs and descriptions revealed the following athlete themes: ‘Connectedness’ and ‘Training in Sport’. Conclusion Photo‐elicitation was a useful and important tool in assisting athlete participants to communicate their motivations to participate in sport in ways that using traditional verbal interviewing would not.
    September 14, 2016   doi: 10.1111/jar.12287   open full text
  • Stories of People Who Have Attended a Lesbian, Gay, Bisexual and Trans Support Group in a Secure Intellectual Disability Service.
    Liz Tallentire, Matthew Smith, Lee David, Adam Roberts, Bruce, Sarah Morrow, Paul Withers, Ian Smith.
    Journal of Applied Research in Intellectual Disabilities. August 31, 2016
    --- - |2+ Background This research is about people who have intellectual disabilities and live in a secure hospital. It is about a group of people who meet at a support group. The support group is for people who are lesbian, gay, bisexual or transgender. Methods These people with intellectual disabilities helped with planning, doing, and telling other people about the research. They told their stories about going to the support group. Results Their stories were joined together into a group story. The story said that the group helped people in lots of different ways. For some people going to the group was difficult at first because it was ?coming out'. This means telling other people you are lesbian, gay, bisexual, or transgender. Then it got easier and people started to feel better about themselves. Then they wanted to help others and this was important in their lives. Conclusions This group seemed to help people get better. We have given some ideas for setting up other groups and doing more research. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    August 31, 2016   doi: 10.1111/jar.12281   open full text
  • Fostering Emotion Expression and Affective Involvement with Communication Partners in People with Congenital Deafblindness and Intellectual Disabilities.
    Marga A. W. Martens, Marleen J. Janssen, Wied A. J. J. M. Ruijssenaars, Mark Huisman, J. Marianne Riksen‐Walraven.
    Journal of Applied Research in Intellectual Disabilities. August 24, 2016
    Background Recent studies have shown that it is possible to foster affective involvement between people with congenital deafblindness and their communication partners. Affective involvement is crucial for well‐being, and it is important to know whether it can also be fostered with people who have congenital deafblindness and intellectual disabilities. Methods This study used a multiple‐baseline design to examine whether an intervention based on the Intervention Model for Affective Involvement would (i) increase affective involvement between four participants with congenital deafblindness and intellectual disabilities and their 13 communication partners and (ii) increase the participants' positive emotions and decrease their negative emotions. Results In all cases, dyadic affective involvement increased, the participants' very positive emotions also increased and the participants' negative emotions decreased. Conclusion The results indicate that communication partners of persons with congenital deafblindness and intellectual disabilities can be successfully trained to foster affective involvement.
    August 24, 2016   doi: 10.1111/jar.12279   open full text
  • From Social Exclusion to Supported Inclusion: Adults with Intellectual Disability Discuss Their Lived Experiences of a Structured Social Group.
    Nathan J. Wilson, Hayden Jaques, Amanda Johnson, Michelle L. Brotherton.
    Journal of Applied Research in Intellectual Disabilities. August 24, 2016
    Background People with intellectual disability often have few friends and experience social exclusion. Recognising this gap, supported social groups with the aim of inclusion and interdependence were created by a supported employment provider. Methods Interviews were undertaken with 10 adults with intellectual disability exploring their lived experiences of a supported social group. Data were analysed using descriptive phenomenology. Results Two themes emerged (i) supported engagement fosters wellbeing, and (ii) developing social belonging and connectedness. Participants not only acknowledged the support that they needed to participate, but also that the social group had changed their lives in many ways. Conclusions Adults with intellectual disability want to socialise, have friends and be part of their community. For this to be achieved, they recognise the need to seek some form of support. With appropriate and targeted support, adults with intellectual disability can move from social exclusion towards supported inclusion and experience richer lives.
    August 24, 2016   doi: 10.1111/jar.12275   open full text
  • ‘Them Two Things are What Collide Together’: Understanding the Sexual Identity Experiences of Lesbian, Gay, Bisexual and Trans People Labelled with Intellectual Disability.
    Robert Dinwoodie, Beth Greenhill, Alex Cookson.
    Journal of Applied Research in Intellectual Disabilities. August 19, 2016
    --- - |2+ Background Previous research aiming to understand the lives of lesbian, gay bisexual and trans (LGBT) people labelled with intellectual disabilities is limited. There are few recent studies and available findings are often contradictory and inconsistent. Method This study aimed to explore how LGBT people labelled with intellectual disabilities experienced their sexual identities. Five LGBT people labelled with intellectual disabilities were interviewed, and data were analysed using interpretative phenomenological analysis methodology. Results Four superordinate themes represented the following: common experiences of bullying/abuse, understanding sexualities, other's responses to intellectual disabilities and sexualities, and navigating acceptance. Conclusions Strategies for coping with abuse maintained participant's engagement in local communities. Sexuality was often problematized by others despite being generally accepted by participants. Coming out was a continual process of decision‐making to facilitate safety and acceptance. To feel fully supported, participants desired holistic service provision sensitive to their sexuality and intellectual disability needs. Clinical and research implications are suggested. - Journal of Applied Research in Intellectual Disabilities, EarlyView.
    August 19, 2016   doi: 10.1111/jar.12252   open full text
  • Inclusion Through Work and Productivity for Persons with Intellectual and Developmental Disabilities.
    Rosemary Lysaght, Jami Petner‐Arrey, Angela Howell‐Moneta, Virginie Cobigo.
    Journal of Applied Research in Intellectual Disabilities. August 18, 2016
    Background Employment provides an important avenue to social inclusion for most adults. A range of productivity options exist for persons with intellectual and developmental disabilities (IDD) who wish to work, each offering unique challenges relative to inclusion. Methods This qualitative study examined the productivity experiences of people with intellectual and developmental disabilities in Ontario, Canada. A purposive sample of 74 individuals with productivity experiences spanning the spectrum of no employment to community‐based jobs was selected from a pool of volunteers recruited through a mailed survey. Semi‐structured interviews were conducted with individuals and family members. Interview transcripts were subjected to a team‐based analysis using grounded theory methods. Results Varying needs and interests exist in regard to work. Participants revealed a multitude of factors contributing to inclusion and exclusion through productivity. Conclusions Productivity, whether paid or unpaid, can be an avenue to social inclusion. The experience of inclusion, particularly of belonging, depends on a successfully negotiated congruence between worker attributes and the social features and demands of the work environment.
    August 18, 2016   doi: 10.1111/jar.12284   open full text
  • An Exploratory Study Investigating How Adults with Intellectual Disabilities Perform on the Visual Association Test (VAT).
    Ann McPaul, Brigid Walker, Jim Law, Karen McKenzie.
    Journal of Applied Research in Intellectual Disabilities. August 05, 2016
    Background Neuropsychological tests of memory are believed to offer the greatest sensitivity at identifying people at the risk of developing dementia. There is a paucity of standardized and appropriate neuropsychological assessments of memory for adults with an intellectual disability. This study examines how adults with an intellectual disability perform on the Visual Association Test (VAT). Methods Forty participants (18–45 years) with intellectual disability, without a diagnosis of dementia, completed the VAT and subtests of the CAMCOG‐DS. Correlational analysis of the test variables was carried out. Results All participants performed well on the VAT irrespective of age, gender or IQ. No significant correlations were found between the VAT and the subtests of the CAMCOG‐DS. Conclusions The VAT was found to be an easy and quick test to use with people with intellectual disability and all participants scored above ‘floor’ level.
    August 05, 2016   doi: 10.1111/jar.12273   open full text
  • Disparities in Unmet Service Needs Among Adults with Intellectual and Other Developmental Disabilities.
    Meghan M. Burke, Tamar Heller.
    Journal of Applied Research in Intellectual Disabilities. August 05, 2016
    Background Due to long waiting lists for services, many adults with intellectual and developmental disabilities in the United States have unmet service needs. Little research, however, has identified the characteristics of caregivers and individuals with intellectual and developmental disabilities that relate to the unmet service needs among individuals who are waiting for services. Method The present authors conducted a statewide mail survey of 234 caregivers of individuals with intellectual and developmental disabilities who were waiting for services. The present authors identified which parent and individual with intellectual and developmental disability characteristics were significantly associated with the number of unmet service needs. Results Individuals with intellectual and developmental disabilities who were in poor health, from minority backgrounds and non‐verbal were significantly more likely to have a greater number of unmet service needs. Additionally, individuals with younger caregivers and individuals with caregivers from low‐income backgrounds were significantly more likely to report a greater number of unmet service needs. Discussion Implications for research and policy are discussed.
    August 05, 2016   doi: 10.1111/jar.12282   open full text
  • The Benefits of Supporting the Autonomy of Individuals with Mild Intellectual Disabilities: An Experimental Study.
    Julie Emond Pelletier, Mireille Joussemet.
    Journal of Applied Research in Intellectual Disabilities. July 26, 2016
    Background The benefits of autonomy support with the general population have been demonstrated numerous times. However, little research has been conducted to verify if these benefits apply to people with special needs. Methods The goal of the study was to examine whether autonomy support (AS) can foster the sense of autonomy of people with a mild intellectual disabilities (MIDs) and improve their experience while engaging in an important but unpleasant learning activity. This experiment compares the effects of two contexts: with and without AS. All participants (N = 51) had a mild intellectual disability and were recruited from rehabilitation centres. Results Compared to participants in the control group, participants in the AS group tended to experience greater autonomy satisfaction and tended to perceive more value to the activity. They were also significantly more engaged in it, and they experienced a steeper decrease in anxiety over time. Conclusions This study suggests that the benefits of AS extend to individuals with mild intellectual disability.
    July 26, 2016   doi: 10.1111/jar.12274   open full text
  • Training of Residential Social Care Staff to Meet the Needs of Older People with Intellectual Disabilities who Develop Age‐Related Health Problems: An Exploratory Study.
    Ruth Northway, Robert Jenkins, Daniella Holland‐Hart.
    Journal of Applied Research in Intellectual Disabilities. July 26, 2016
    Background Despite awareness of the age related health needs of people with intellectual disabilities little is known regarding how residential social care staff are prepared to meet such needs. Methods Data were gathered via semi‐structured interviews from 14 managers of supported living settings. Transcripts were thematically analysed. Findings Staff may work in supported living settings with no prior experience of care work, and previous knowledge/experience of supporting people in relation to their health is not required. Whilst health related training is provided there is a lack of specific training regarding healthy ageing, and training seems to be reactive to changing needs of tenants meaning that proactive monitoring for changes in health status may not occur. Conclusions Whilst some training is provided for residential social care staff in relation to health and ageing a more proactive approach is required which should include a focus on healthy ageing.
    July 26, 2016   doi: 10.1111/jar.12283   open full text
  • Behaviour Problems in Children with Intellectual Disabilities in a Resource‐Poor Setting in India – Part 1: Association with Age, Sex, Severity of Intellectual Disabilities and IQ.
    Ram Lakhan, M. Thomas Kishore.
    Journal of Applied Research in Intellectual Disabilities. July 26, 2016
    Background Behaviour problems are most common in people with intellectual disabilities. Nature of behaviour problems can vary depending upon the age, sex and intellectual level (IQ). Objectives This study examined the distribution of behaviour problems across intellectual disability categories and their association with IQ age and sex in children with intellectual disabilities. Methods This is a cross‐sectional study design. A total of 104 participants (57 males and 47 females), aged 3–18 years, with intellectual disabilities were administered The Behavioural Assessment Scale for Indian Children with Mental Retardation (BASIC‐MR). Results It was found that violent and destructive, temper tantrum and self‐injurious behaviours were differently distributed with reference to intellectual disability levels (P > 0.05) but cumulative scores per se problem behaviours did not vary with the level of intellectual disabilities. IQ showed a significant positive correlation with destructive and violent and misbehaves with other; and a significant negative correlation with temper tantrums and self‐injurious behaviours. Age was significantly, positively associated with violent and destructive, odd, and hyperactive behaviours and inversely with self‐injurious problem behaviours. There was no significant relationship between the sex of the child and problem behaviours. There was no significant interactive effect of sex and level of intellectual disabilities of the child on problem behaviours. Conclusion Behaviour problems, in general, are not equally distributed in all categories of intellectual disabilities. Relationship between behaviour problems and age, sex and IQ may not be uniform. But specific behaviours are more associated with specific age group and intellectual disability levels.
    July 26, 2016   doi: 10.1111/jar.12278   open full text
  • The Role of Executive Control and Readiness to Change in Problematic Drinkers with Mild to Borderline Intellectual Disability.
    Neomi Duijvenbode, Robert Didden, Hubert P. L. M. Korzilius, Rutger C. M. E. Engels.
    Journal of Applied Research in Intellectual Disabilities. July 25, 2016
    Background Problematic alcohol use is associated with neuropsychological consequences, including cognitive biases. The goal of the study was to explore the moderating role of executive control and readiness to change on the relationship between alcohol use and cognitive biases in light and problematic drinkers with and without mild to borderline intellectual disability (MBID). Method Participants (N = 112) performed the visual dot probe task to measure the strength of the cognitive biases. Executive control was measured using two computerised tasks for working memory capacity (Corsi block‐tapping task) and inhibitory control (Go/No‐go task). Readiness to change was measured using the Readiness to Change Questionnaire. Results No cognitive biases or executive dysfunctions were found in problematic drinkers. Working memory capacity and inhibitory control were impaired among individuals with MBID, irrespective of severity of alcohol use‐related problems. Executive control and readiness to change did not moderate the relationship between alcohol use and cognitive biases. Conclusion The results fail to support the dual‐process models of addiction, but results need to be treated with caution given the problematic psychometric qualities of the visual dot probe task. Implementing a neurocognitive assessment and protocols in the treatment of substance use disorders seems premature.
    July 25, 2016   doi: 10.1111/jar.12280   open full text
  • Community Involvement of Young Adults with Intellectual Disabilities: Their Experiences and Perspectives on Inclusion.
    Sarah A. Hall.
    Journal of Applied Research in Intellectual Disabilities. July 25, 2016
    Background Inclusion in the community is essential to enhancing a person's quality of life. Although people with intellectual disabilities have a desire to be more involved in activities, they experience barriers that limit their inclusion. Methods The purpose of this study was to describe the community involvement of young adults with intellectual disability. I interviewed fourteen young adults with intellectual disability to explore their involvement in work, recreation and leisure activities. Findings Four themes emerged from the data: vocational endeavours, leisure pursuits, social inclusion and supports. The contexts of their experiences either facilitated or hindered their community involvement. Conclusions The community involvement of young adults with intellectual disability varies depending on the opportunities and supports available to them. Their inclusion in the community may be enhanced by additional transportation options, continuing education in vocational and social skills, personalized guidance from group members and environments that are welcoming to people with disabilities.
    July 25, 2016   doi: 10.1111/jar.12276   open full text
  • The Effect of Educational Software, Video Modelling and Group Discussion on Social‐Skill Acquisition Among Students with Mild Intellectual Disabilities.
    Orit E. Hetzroni, Irit Banin.
    Journal of Applied Research in Intellectual Disabilities. July 13, 2016
    Background People with intellectual and developmental disabilities (IDD) often demonstrate difficulties in social skills. The purpose of this study was to examine the effects of a comprehensive intervention program on the acquisition of social skills among students with mild IDD. Method Single subject multiple baseline design across situations was used for teaching five school‐age children with mild IDD social skills embedded in school‐based situations. Results Results demonstrate that the intervention program that included video modelling and games embedded with group discussions and simulations increased the level and use of adequate social behaviours within the school's natural environment. Conclusions Results demonstrate the unique attribution of a comprehensive interactive program for acquisition and transfer of participants' social skills such as language pragmatics and social rules within the school environment. Group discussions and simulations were beneficial and enabled both group and personalized instruction through the unique application of the program designed for the study.
    July 13, 2016   doi: 10.1111/jar.12271   open full text
  • An Investigation into the use of the Deprivation of Liberty Safeguards with People with Intellectual Disabilities.
    Kate Blamires, Rachel Forrester‐Jones, Glynis Murphy.
    Journal of Applied Research in Intellectual Disabilities. June 28, 2016
    Background This small, qualitative study sought to develop a richer understanding of the way in which the deprivation of liberty safeguards (DOLS) were being used for people with intellectual disabilities. It is important to note that this study was completed prior to the changes resulting from the P v Cheshire West and Chester Council judgement. Method Six DOLS cases were identified and two people involved in each case were interviewed (care home managers, key workers, social workers, specialist nurses or psychologists), using semi‐structured interviews. The data were analysed using grounded theory techniques. Results The interviewees described DOLS as providing a framework leading to positive outcomes for the people they supported, in some cases avoiding inpatient stays. However, they had a number of concerns including lack of knowledge and training, potential under use of DOLS and disappointment with case law. Conclusion Overall, these findings are encouraging in regard to the specific individuals for whom DOLS applications were made; however, they also highlight the need for a stronger agenda regarding wider dissemination of information, and training about DOLS, as well as some reform.
    June 28, 2016   doi: 10.1111/jar.12266   open full text
  • Developing the personal narratives of children with complex communication needs associated with intellectual disabilities: What is the potential of Storysharing®?
    Karen Bunning, Lynsey Gooch, Miranda Johnson.
    Journal of Applied Research in Intellectual Disabilities. June 22, 2016
    Background Sharing personal experience in narrative is challenging for individuals with intellectual disabilities. The aim was to investigate the potential of Storysharing® (Storysharing is an innovative communication method based on personal narrative, which has been developed to support conversations with people who have severe difficulties in communication) intervention. Materials and Methods The study involved eleven pupil‐educational supporter dyads at a special school. Storysharing® was implemented over a 15‐week period. Personal narratives were captured on video pre‐ and post‐intervention. The data were analysed for discourse and narrative. Results Significant differences revealed a decline in ‘query‐answer’ sequences and an increase in supporter use of ‘prompts’. After intervention, there were fewer story episodes. Narrative structure showed gains in action sequences leading to climax, and in closing elements, indicating a more complete narrative. Conclusions The Storysharing® intervention appears to be associated with changes to the dyadic, personal narratives illustrating its potential.
    June 22, 2016   doi: 10.1111/jar.12268   open full text
  • A Comparison of Two Methods for Recruiting Children with an Intellectual Disability.
    Dawn Adams, Louise Handley, Mary Heald, Doug Simkiss, Alison Jones, Emily Walls, Chris Oliver.
    Journal of Applied Research in Intellectual Disabilities. June 21, 2016
    Background Recruitment is a widely cited barrier of representative intellectual disability research, yet it is rarely studied. This study aims to document the rates of recruiting children with intellectual disabilities using two methods and discuss the impact of such methods on sample characteristics. Methods Questionnaire completion rates are compared between (i) participants being approached in child development centre waiting rooms and (ii), one year later, the same participants being invited to take part by phone, email and/or post. Results The face‐to‐face recruitment method resulted in a better recruitment rate (58.5% compared to 18.5%) and a larger sample (n = 438) than the telephone/email/post sample (n = 40). It also required less hours of researcher time per completed questionnaire. Conclusions In‐line with previous research, recruitment of participants with intellectual disabilities (or their parents/carers) requires significant time and resources to get a sample of an acceptable size.
    June 21, 2016   doi: 10.1111/jar.12263   open full text
  • An Exploration of Comfort and Discomfort Amongst Children and Young People with Intellectual Disabilities Who Depend on Postural Management Equipment.
    Elizabeth A. Lyons, Diana E. Jones, Veronica M. Swallow, Colin Chandler.
    Journal of Applied Research in Intellectual Disabilities. June 13, 2016
    Background The natural response to the intrusive bodily sensation is positional change. This study explored how children and young people (CYP) with intellectual disabilities had their comfort needs met when using adaptive positioning equipment. Methods Thirteen qualitative case studies were undertaken. A parent, a teacher/key worker and a therapist for each CYP were interviewed, and daily routines were observed, with selective video recording. Single case and cross case analyses were undertaken. Results Attentive caregivers read the behavioural expressions of the CYP and responded reassuringly, safeguarding them from discomforting experiences. Threats to comfort include the restrictive nature of some equipment accessories, positioning errors and procedural stretching. Conclusions The same item of equipment can be both comfortable and uncomfortable. Given the social and interactional world in which the CYP live and learn, it is others who must accept responsibility for ensuring their optimal level of comfort.
    June 13, 2016   doi: 10.1111/jar.12267   open full text
  • Stakeholders’ Perspectives towards the Use of the Comprehensive Health Assessment Program (CHAP) for Adults with Intellectual Disabilities in Manitoba.
    Shahin Shooshtari, Beverley Temple, Celeste Waldman, Sneha Abraham, Héléne Ouellette‐Kuntz, Nicholas Lennox.
    Journal of Applied Research in Intellectual Disabilities. June 09, 2016
    Background No standardized tool is used in Canada for comprehensive health assessments of adults with intellectual disabilities. This study was conducted to determine the feasibility of implementing the Comprehensive Health Assessment Program (CHAP) in Manitoba, Canada. Method This was a qualitative study using a purposive sample of physicians, nurse practitioners, support workers and families. Data were collected through individual interviews and focus groups and were analysed using content analysis. Results Use of the CHAP was perceived as beneficial for persons with intellectual disabilities. Improved continuity of care was of the reported benefits. Six barriers for the future implementation of the CHAP were identified including the time required to complete the CHAP, and the perceived lack of physicians’ willingness to do comprehensive assessments. Conclusion The future implementation of the CHAP was strongly supported. For its successful implementation, training of healthcare professionals and support staff and change in regulations and policies were recommended.
    June 09, 2016   doi: 10.1111/jar.12261   open full text
  • Evaluating a Research Training Programme for People with Intellectual Disabilities Participating in Inclusive Research: The Views of Participants.
    Judit Fullana, Maria Pallisera, Elena Català, Carolina Puyalto.
    Journal of Applied Research in Intellectual Disabilities. June 09, 2016
    Background This article presents the results of evaluating a research training programme aimed at developing the skills of people with intellectual disabilities to actively participate in inclusive research. Methods The present authors opted for a responsive approach to evaluation, using a combination of interviews, questionnaires and focus groups to gather information on the views of students, trainers and members of the research team regarding how the programme progressed, the learning achieved and participants’ satisfaction with the programme. Results The evaluation showed that most of the participants were satisfied with the programme and provided guidelines for planning contents and materials, demonstrating the usefulness of these types of programme in constructing the research group and empowering people with intellectual disabilities to participate in research. Conclusions The evaluation revealed that the programme had been a positive social experience that fostered interest in lifelong learning for people with intellectual disabilities.
    June 09, 2016   doi: 10.1111/jar.12262   open full text
  • Evaluating the Performance Improvement Preferences of Disability Service Managers: An Exploratory Study Using Gilbert's Behavior Engineering Model.
    John R. Wooderson, Monica Cuskelly, Kim A. Meyer.
    Journal of Applied Research in Intellectual Disabilities. June 09, 2016
    Background Front‐line managers play an important role in managing the performance of staff working in services for people with intellectual disability, but little is known about the practices they prefer to use to improve staff performance and whether these align with what research has shown to be effective. Method This study comprised two phases. First, the present authors tested the validity and reliability of a short questionnaire designed to evaluate managers’ preferences for performance improvement practices. Then, the present authors collected and analysed responses from 175 managers working in disability services in Queensland, Australia. Results The questionnaire demonstrated good content validity, concurrent validity and test–retest reliability. The participants believed strategies related to changing employee individual characteristics to be more effective than strategies aimed at improving environmental factors. Conclusions This study provides important considerations regarding the professional development needs of front‐line managers working in organizations that provide services to people with intellectual disability.
    June 09, 2016   doi: 10.1111/jar.12260   open full text
  • ICT and Intellectual Disability: A Survey of Organizational Support at the Municipal Level in Sweden.
    Camilla Ramsten, Lena Marmstål Hammar, Lene Martin, Kerstin Göransson.
    Journal of Applied Research in Intellectual Disabilities. June 08, 2016
    Background Young adults today have grown up in a society where information and communication technology (ICT) support empowerment and social participation. Young adults with mild‐to‐moderate intellectual disability are at risk for marginalization by the digital divide. The aim was to map and describe how municipal organizations in Sweden organize support in terms of policy and strategies to enable the use of ICT in social care for adults with a mild‐to‐moderate intellectual disability. Methods A quantitative, cross‐sectional survey including all municipalities in Sweden (n = 290) was conducted (response rate: 51%, n = 147). Descriptive statistics were used. Results Findings indicate a lack of organizational support for staff as well as for young adults with mild‐to‐moderate intellectual disability. Conclusion Municipalities request more knowledge about strategies for making ICT available. Despite the lack of comprehensive strategies for ICT, some Swedish municipalities have taken the initiative in this area.
    June 08, 2016   doi: 10.1111/jar.12265   open full text
  • Intensive Interaction Training for Paid Carers: ‘Looking, Looking and Find Out When They Want to Relate to You’.
    Maninder K. Nagra, Rose White, Afua Appiah, Kelly Rayner.
    Journal of Applied Research in Intellectual Disabilities. June 08, 2016
    Background Intensive interaction (II) is a communication approach useful for working with people with severe intellectual disabilities. Health and social care providers offer II training courses to paid carers working in local services with the goal of improving social communication for their clients. Materials and methods Eight paid carers who had been trained in II were interviewed 2–3 years after training, to explore how their practice had changed, and whether any changes were sustainable. Interviews were analysed using interpretative phenomenological analysis. Results Analysis revealed a master theme of emotional and practical endurance, with empowerment, better understanding and perceived barriers to implementation comprising subthemes. Conclusions Despite actual and perceived barriers to the enduring use of II, all participants spoke positively of the approach and were continuing to use II in practice.
    June 08, 2016   doi: 10.1111/jar.12259   open full text
  • Perceptions and Discourses Relating to Genetic Testing: Interviews with People with Down Syndrome.
    Barbara Barter, Richard Patrick Hastings, Rebecca Williams, Jaci C. Huws.
    Journal of Applied Research in Intellectual Disabilities. May 11, 2016
    Background The perceptions of individuals with Down syndrome are conspicuously absent in discussions about the use of prenatal testing. Method Eight individuals with Down syndrome were interviewed about their views and experience of the topic of prenatal testing. Results Interpretative phenomenological analysis revealed two major themes with subthemes: (1) a devalued condition and a valued life and (2) a question of ‘want?’ Foucauldian discourse analysis highlighted two main discursive practices: (i) social deviance and (ii) tragedy and catastrophe of the birth of a baby with Down syndrome. Conclusions The findings suggest that individuals with intellectual disabilities can make a valuable contribution to discussions surrounding the use of prenatal testing. Implications for clinical practice include the use of information about Down syndrome given to prospective parents, and the possible psychological impact of prenatal testing practices on individuals with Down syndrome.
    May 11, 2016   doi: 10.1111/jar.12256   open full text
  • Groups for Parents with Intellectual Disabilities: A Qualitative Analysis of Experiences.
    Marie Gustavsson, Mikaela Starke.
    Journal of Applied Research in Intellectual Disabilities. May 11, 2016
    Background Parents with intellectual disabilities (IDs) are often socially isolated and need support. Materials and Methods This qualitative study is based on participant observations of a group for parents with with intellectual disabilities. Data were categorized and interpreted in the framework of social capital and symbolic interactionism. Results Being a part of the parent group provided parents with a social network, which had the potential to be supportive in everyday life. The social workers in the group were seen as allies, and parents appeared to trust them and felt they could seek advice and tell them about their personal problems. The parents sometimes asked for advice about how to handle contacts with other professionals in their everyday life. The parents valued the social contact with the other parents. Conclusions The group provided the parents with the opportunity to meet both other parents and two social workers. The group gave a greater number of social relations, adding to the parents' social capital and helping to reduce social isolation.
    May 11, 2016   doi: 10.1111/jar.12258   open full text
  • Associations Among Vocabulary, Executive Function Skills and Empathy in Individuals with Autism Spectrum Disorder.
    JoAnne Cascia, Jason J. Barr.
    Journal of Applied Research in Intellectual Disabilities. May 02, 2016
    Background Individuals with autism spectrum disorder (ASD) have been characterized as having deficits in social communication and empathy which present difficulties in the areas of social reciprocity, sharing of emotions and developing and maintaining relationships. This study explores the associations between vocabulary, executive function skills and empathy in individuals with ASD. Method A survey study with a purposive sample was used. Twenty adolescents with ASD completed receptive and expressive vocabulary assessments while their parent and teacher completed executive function and empathy scales. Results Results indicated that higher vocabulary and executive function skills were associated with higher empathy. Nonparametric analyses also showed that executive function mediated the association between empathy and vocabulary. Differences between parent and teacher responses were also explored. Conclusions The results suggest that targeting vocabulary and executive function skills prior to, or in conjunction with, social skills in educational and therapeutic settings may prove beneficial.
    May 02, 2016   doi: 10.1111/jar.12257   open full text
  • Comparing Health Status, Health Trajectories and Use of Health and Social Services between Children with and without Developmental Disabilities: A Population‐based Longitudinal Study in Manitoba.
    Shahin Shooshtari, Marni Brownell, Rosemary S. L. Mills, Natalia Dik, Dickie C. T. Yu, Dan Chateau, Charles A. Burchill, Monika Wetzel.
    Journal of Applied Research in Intellectual Disabilities. April 04, 2016
    Background Little information exists on health of children with developmental disabilities (DDs) in the Canadian province of Manitoba. Method The present authors linked 12 years of administrative data and compared health status, changes in health and access to health and social services between children with (n = 1877) and without (n = 5661) DDs living in the province, matched by age, sex and region of residence. Results Children with DDs were significantly more likely than children in the matched comparison group to die before the age of 17 and have a history of respiratory illness, diabetes and injury‐related hospitalizations. Children with DD also had significantly higher average number of ambulatory physician visits and higher rate of continuity of care. Conclusions Children with DDs had poorer health status than the matched comparison group. The health disparities experienced by children with DDs persisted over time. Further population‐based longitudinal research is needed in this area.
    April 04, 2016   doi: 10.1111/jar.12253   open full text
  • Partner Selection for People with Intellectual Disabilities.
    Claire Bates, Louise Terry, Keith Popple.
    Journal of Applied Research in Intellectual Disabilities. March 21, 2016
    Background The aim of this research was to understand the characteristics that adults with intellectual disabilities look for in a partner. There have been numerous studies that have explored partner selection for people without intellectual disabilities, but no research that specifically identified the traits valued in a partner by people with intellectual disabilities. Method In‐depth interviews were conducted with eleven participants across two UK sites. All participants were adults with an intellectual disability who had been in a relationship with a partner for over a year. The narratives were analysed utilizing hermeneutic phenomenology, guided by the theory of Van Manen (1990). Results The findings highlighted that, regardless of age, participant's relationships typically developed within a segregated environment for people with intellectual disabilities over the past 10 years. People with intellectual disabilities expressed a wish to be loved, to be treated kindly and to have companionship. However, they did not place high value on attributes such as financial security, social status or intelligence. Conclusions The research demonstrated how poorly integrated people with intellectual disabilities are within mainstream society. Desired characteristics and expectations for participant's relationships were rooted in a shared history and culture, which was shaped by their intellectual disability and support needs.
    March 21, 2016   doi: 10.1111/jar.12254   open full text
  • Tobacco and Alcohol Use in People With Mild/Moderate Intellectual Disabilities: Giving Voice to Their Health Promotion Needs.
    Susan Kerr, Maggie Lawrence, Alan R. Middleton, Lorna Fitzsimmons, Christopher Darbyshire.
    Journal of Applied Research in Intellectual Disabilities. March 21, 2016
    Background Concerns have been raised about the use/misuse of tobacco and alcohol by people with mild/moderate intellectual disabilities. Aiming to address an identified gap in the current evidence base, this study sought to gain an understanding of the tobacco‐ and alcohol‐related health promotion needs of this client group. Methods Informed by the principles of social cognitive theory, data were collected using focus group and telephone interviews. Participants were 16 people with intellectual disabilities, two family carers and 15 health and social care professionals. Data were analysed using the Framework approach. Findings Four themes were described: being like others; social and emotional influences; understandings, misunderstandings and learning from experience; and choices and challenges. Reasons for smoking and drinking alcohol echoed those of the general population; however, health promotion needs were more complex (e.g. linked to problems with consequential thinking; low levels of self‐efficacy). Conclusion This article provides insight into the tobacco‐ and alcohol‐related health promotion needs of people with intellectual disabilities. There is a need for integrated service provision that addresses both personal and environmental influences on behaviour.
    March 21, 2016   doi: 10.1111/jar.12255   open full text
  • An Exploration of Costs of Community‐Based Specialist Health Service Provision for the Management of Aggressive Behaviour in Adults with Intellectual Disabilities.
    Gemma Unwin, Shoumitro Deb, Tanya Deb.
    Journal of Applied Research in Intellectual Disabilities. March 11, 2016
    Background In the UK, people with intellectual disabilities who exhibit aggressive behaviour often receive community‐based specialist health services from a community learning disability team (CLDT). Our aim was to estimate costs associated with this provision and to identify predictors of higher costs. Method Costs were estimated for 60 adults with intellectual disabilities and aggressive behaviour who attended specialist psychiatric outpatient clinics in the West Midlands region of the UK, including contact time with members of the CLDT and use of psychotropic medication over a 12‐month period. Results Mean total cost of 12‐month service provision was £418 (95% confidence interval [CI] £299–557). Mean total cost of 12‐month psychotropic medication was £369 (95% CI £256–492). Amongst individual members of the CLDT, mean costs were highest for psychiatrists (£181) and relatively lower for community nurses (£70) and clinical psychologists (£30), and lowest for physiotherapists (£13). Male sex, presence of expressive verbal communication and presence of epilepsy were independently associated with 12‐month medication and service use costs, accounting for 23% of the variance in cost. Conclusions It seems that in terms of costs, there is an overreliance on medication and psychiatrists and a relatively lesser reliance on other CLDT members such as community nurses and clinical psychologists for the management of aggressive behaviour in adults with intellectual disabilities within community settings. Health commissioners may wish to explore this relative cost discrepancy further and try to redress the balance where appropriate.
    March 11, 2016   doi: 10.1111/jar.12241   open full text
  • ‘I Wanted to Come Here Because of My Child’: Stories of Migration Told by Turkish‐Speaking Families Who Have a Son or Daughter with Intellectual Disabilities.
    Prabhleen Sandhu, Jeyda Ibrahim, Deborah Chinn.
    Journal of Applied Research in Intellectual Disabilities. March 04, 2016
    Background Despite growing interest in the experiences and social barriers experienced by people with intellectual disabilities from ethnic minorities, the specific challenges associated with migration from abroad faced by these individuals and their families have been overlooked. This research focuses on narratives told by Turkish‐speaking families about migrating to the UK with a family member with intellectual disabilities. Method Semi‐structured interviews were carried out with five Turkish‐speaking families who have a son or daughter with an intellectual disability and had migrated to the UK. Interviews were analysed using narrative analysis. Results Seeking help for the person with intellectual disabilities in a new country was a central part of migration narratives. The family member with intellectual disabilities was described as being caught up in wider geo‐political conflicts. Families continued to face challenges within their own communities and with accessing local services. Conclusions Eliciting narratives about families’ migration to their new homes can provide professionals with important information about family experiences of trauma and clarify hopes and expectations regarding service provision.
    March 04, 2016   doi: 10.1111/jar.12248   open full text
  • Day Service Provision for People with Intellectual Disabilities: A Case Study Mapping 15‐Year Trends in Ireland.
    Padraic Fleming, Sinead McGilloway, Sarah Barry.
    Journal of Applied Research in Intellectual Disabilities. February 26, 2016
    Background Day services for people with intellectual disabilities are experiencing a global paradigm shift towards innovative person‐centred models of care. This study maps changing trends in day service utilization to highlight how policy, emergent patterns and demographic trends influence service delivery. Methods National intellectual disability data (1998–2013) were analysed using WINPEPI software and mapped using QGIS Geographic Information System. Results Statistically significant changes indicated fewer people availing of day services as a proportion of the general population; more males; fewer people aged <35; a doubling in person‐centred plans; and an emerging urban/rural divide. Day services did not change substantially and often did not reflect demand. Conclusions Emergent trends can inform future direction of disability services. Government funds should support individualized models, more adaptive to changing trends. National databases need flexibility to respond to policy and user demands. Future research should focus on day service utilization of younger people and the impact of rurality on service availability, utilization, quality and migration.
    February 26, 2016   doi: 10.1111/jar.12249   open full text
  • Long‐Term Experiences in Cash and Counseling for Young Adults with Intellectual Disabilities: Familial Programme Representative Descriptions.
    Melissa L. Harry, Lynn MacDonald, Althea McLuckie, Christina Battista, Ellen K. Mahoney, Kevin J. Mahoney.
    Journal of Applied Research in Intellectual Disabilities. February 19, 2016
    Background Our aim was to explore previously unknown long‐term outcomes of self‐directed personal care services for young adults with intellectual disabilities and limitations in activities of daily living. Materials and Methods The present authors utilized participatory action research and qualitative content analysis in interviewing 11 unpaid familial programme representatives of young adults with intellectual disabilities, ages 23–34, who were eligible for income‐based Medicaid and enrolled five or more years in a Cash and Counseling‐based programme of self‐direction in the United States. Results Young adults are represented as receiving services and supports in a supportive and stable environment, with previously identified short‐term programme benefits evident over the long‐term. Young adults are also transitioning to adulthood at home with their families as primary social support and caregivers, bridging a service gap. Conclusions Our results show that self‐direction helps meet these young adults’ personal care and community engagement needs over time.
    February 19, 2016   doi: 10.1111/jar.12251   open full text
  • Review of Interventions to Enhance the Health Communication of People With Intellectual Disabilities: A Communicative Health Literacy Perspective.
    Deborah Chinn.
    Journal of Applied Research in Intellectual Disabilities. February 17, 2016
    Background Communicative health literacy is a term relating to the range of competencies and capabilities patients bring to the task of seeking information about their health and sharing it with others. This exchange can be problematic for people with intellectual disabilities. The aim of this review was to synthesize findings from interventions designed to improve health communication for people with intellectual disabilities. Materials and method Available evidence was systematically reviewed, and findings from 14 articles were synthesized in a narrative review. Results and conclusions Interventions addressed communicative aspects of health consultations, taking into account emotional factors and social context. Questions remain about how such interventions might impact on real‐life health consultations and how issues of power might be resolved.
    February 17, 2016   doi: 10.1111/jar.12246   open full text
  • Facing the Unknown: Intolerance of Uncertainty in Children with Autism Spectrum Disorder.
    Anna R. Hodgson, Mark H. Freeston, Emma Honey, Jacqui Rodgers.
    Journal of Applied Research in Intellectual Disabilities. February 12, 2016
    Background Anxiety is a common problem for children with autism spectrum disorder (ASD). Recent research indicates that intolerance of uncertainty (IU) may be an important aspect of anxiety for this population. IU is the belief that uncertainty is upsetting, and not knowing what is going to happen is negative. There is little known about the phenomenology of IU in children with ASD. We therefore present data from parent focus groups exploring this concept in children with ASD. Methods Participants were asked to differentiate IU from dislike of change and fear, and to discuss examples of IU and the strategies they use to manage it. Their experiences of IU and strategies are presented. Results IU was evident across novel and familiar situations and parents used a variety of strategies to manage IU. Their experiences of IU and strategies used are presented. Conclusions Participants were able to identify and provide examples of IU suggesting that it is a recognizable construct among children with ASD.
    February 12, 2016   doi: 10.1111/jar.12245   open full text
  • Cognitive Behaviour Therapy for Post‐Traumatic Stress Disorder in a person with an Autism Spectrum Condition and Intellectual Disability: A Case Study.
    Neil Carrigan, Kate Allez.
    Journal of Applied Research in Intellectual Disabilities. February 12, 2016
    Background One of the difficulties in assessing and treating PTSD in people with intellectual disability is that it may not present with the typical symptoms associated with the disorder. This may be why there is a dearth of literature on the treatment of PTSD using cognitive behavioural approaches for people with intellectual disability (e.g. Ehlers et al. Behav Res Ther, 43, 2005, 413–431). This paper reports the treatment for PTSD in a young man diagnosed with autism and a mild intellectual disability. Method Treatment involved 12 sessions of cognitive therapy for PTSD using the approach developed by Ehlers et al. Results There was an overall reduction in symptoms and a self‐reported elevation in mood. With careful questioning, adaptation of language and elucidation of concepts, the patient was able to fully engage in therapy. Discussion This case suggests that cognitive approaches to treating PTSD can be successful in people with intellectual disability and autism.
    February 12, 2016   doi: 10.1111/jar.12243   open full text
  • Enhancing Self‐Determination in Health: Results of an RCT of the Ask Project, a School‐Based Intervention for Adolescents with Intellectual Disability.
    Lyn McPherson, Robert S. Ware, Suzanne Carrington, Nicholas Lennox.
    Journal of Applied Research in Intellectual Disabilities. February 12, 2016
    Background Adolescents with intellectual disability have high levels of unrecognized disease and inadequate health screening/promotion which might be addressed by improving health advocacy skills. Methods A parallel‐group cluster randomized controlled trial was conducted to investigate whether a health intervention package, consisting of classroom‐based health education, a hand‐held health record and a health check, increased carer‐reported health advocacy in adolescents with intellectual disabilities. Results Carers of 388 adolescents responded. Adolescents allocated to receive the health intervention package were significantly more likely to go to the doctor on their own, ask questions and explain their health problems to the doctor without help. Carers reported their adolescent had benefited, gaining increased knowledge and responsibility for their own health. They themselves reported an increase in knowledge and better ability to support the young person. Conclusions An educational initiative based on the Ask Health Diary led to improved healthcare autonomy for adolescents with intellectual disabilities.
    February 12, 2016   doi: 10.1111/jar.12247   open full text
  • An Exploratory Study of the Knowledge of Personal Safety Skills Among Children with Developmental Disabilities and Their Parents.
    Hannah L. Miller, Kathryn M. Pavlik, Min Ah Kim, Karen C. Rogers.
    Journal of Applied Research in Intellectual Disabilities. February 02, 2016
    Background This study assessed the knowledge of personal safety skills among children with developmental disabilities and their parents' perceptions of children's knowledge. Method This exploratory study examined the mental health records of 37 children with developmental disabilities referred for an abuse risk reduction group in a community mental health setting. Qualitative analysis of children's responses to questions about personal safety skills (knowledge related to physical development and personal safety, an appropriate and inappropriate touch and safety skills to respond to an inappropriate touch) indicated participants' varied and inconsistent levels of knowledge. Results Consistent with the literature, the results indicate risk factors for sexual abuse among children with developmental disabilities, including children's difficulty distinguishing between an appropriate and inappropriate touch and the lack of knowledge regarding appropriate venues for disclosing an inappropriate touch. Among parents, a lack of certainty regarding their children's knowledge and the ability to keep themselves safe was identified. Conclusion Results support the need for education about personal safety for children with developmental disabilities and their families.
    February 02, 2016   doi: 10.1111/jar.12239   open full text
  • ‘Disability Means, um, Dysfunctioning People’: A Qualitative Analysis of the Meaning and Experience of Disability among Adults with Intellectual Disabilities.
    Rebecca Monteleone, Rachel Forrester‐Jones.
    Journal of Applied Research in Intellectual Disabilities. February 02, 2016
    Background There has been little qualitative analysis of the experience of stigma, social comparisons and conception of identity among adults with intellectual disabilities (ID). This study aimed to develop an understanding of how adults with intellectual disabilities experience their own disability, and any implications relating to self‐esteem, stigma and social interactions. Materials and Methods Fifteen adults with intellectual disabilities were interviewed using semi‐structured, open‐ended questions regarding disability, social interactions and self‐esteem. Interviews were analysed independently by two researchers using interpretive phenomenological analysis. Results Three major themes emerged during analysis, exploring pressure on participants to behave in a socially normative way, tendency to produce personal definitions of disability and consistently limited knowledge of and discomfort around common disability terminology. Conclusions Participants' clearly experienced feelings of difference, despite a lack of articulation. Limited understanding of both terminology and conceptualization of disability status could negatively impact self‐esteem, person‐centred actions and political movement.
    February 02, 2016   doi: 10.1111/jar.12240   open full text
  • The Diagnostic Guideline for Anxiety and Challenging Behaviour for Persons with Intellectual Disabilities: Preliminary Outcomes on Internalizing Problems, Challenging Behaviours, Quality of Life and Clients' Satisfaction.
    Addy Pruijssers, Berno Meijel, Marian Maaskant, Steven Teerenstra, Theo Achterberg.
    Journal of Applied Research in Intellectual Disabilities. January 26, 2016
    Background People with intellectual disabilities are vulnerable to develop psychopathology (in particular anxiety) and related challenging behaviour. A diagnostic guideline was developed to support professionals to better diagnose and thus treat psychopathology and related CB. This study examined preliminary outcomes from the application of this guideline. Method A comparative multiple case study with an experimental and a control condition. Results The application of the guideline showed a trend of decreases of internalizing problems (P = 0.07) and anxiety/depressed problems (P = 0.09). We found no statistically significant decreases of externalizing problems and no increases in perceived quality of life as compared with care as usual. Clients were not more satisfied with the support they received for coping with their emotional and behaviour problems. Conclusion The application of the Diagnostic Guideline for Anxiety and Challenging Behaviour did not show statistically significant changes in externalizing problems and Quality of Life. Despite the small sample size of n = 59, we did find a trend in decreasing internalizing problems and anxiety/depressed problems. Further research into either or not confirming these trends is recommended.
    January 26, 2016   doi: 10.1111/jar.12235   open full text
  • Development and Validation of a Modified Multiple Errands Test for Adults with Intellectual Disabilities.
    Tom Steverson, Anna‐Lynne R. Adlam, Peter E. Langdon.
    Journal of Applied Research in Intellectual Disabilities. January 26, 2016
    Background The aims of the current study were to adapt a version of the MET for people with intellectual disabilities and assess its ecological and construct validity. Material and Methods Using a correlational design, 40 participants with intellectual disabilities were invited to complete a battery of neuropsychological assessments and the modified Multiple Errands Test for Intellectual Disabilities (mMET‐IDs). Results The ability to successfully complete tasks on the mMET‐IDs correlated significantly with measures of the Supervisory Attentional System, namely, the Tower of London Test and the Six Parts Test. However, performance on the mMET‐IDs and the Six Parts Test could be accounted for by Verbal IQ and receptive vocabulary. The mMET‐IDs failed to correlate with the DEX‐IR. Conclusions The mMET‐IDs can be successfully used to assess some aspects of the Supervisory Attentional System in people with intellectual disabilities. Further development is needed, however, to improve the ecological validity of the mMET‐IDs.
    January 26, 2016   doi: 10.1111/jar.12236   open full text
  • ‘I Know it was Every Week, but I Can't be Sure if it was Every Day: Domestic Violence and Women with Learning Disabilities.
    Michelle McCarthy, Siobhan Hunt, Karen Milne‐Skillman.
    Journal of Applied Research in Intellectual Disabilities. January 14, 2016
    Background Domestic violence against women is well researched in the general population, but much less so in relation to women with learning disabilities. This qualitative research study interviewed 15 women with learning disabilities who had experienced domestic violence about their experiences, the impact of the violence on them and their children, their coping strategies and help seeking behaviour. Materials and methods Semistructured in‐depth interviews were conducted. Data were analysed using Inter‐pretive Phenomenological Analysis. A service user advisory group helped at particular stages, notably at the formative stage and with dissemination, especially the production of accessible materials, including a DVD. Results The violence experienced by many of the women was severe and frequent. It impacted negatively on their physical and psychological well‐being. The women's awareness of refuges and others sources of help was generally low. Conclusions Healthcare and social care professionals have a clear remit to help women with learning disabilities to avoid and escape violent relationships.
    January 14, 2016   doi: 10.1111/jar.12237   open full text
  • The Prevalence of Autism Spectrum Disorders in West Pomeranian and Pomeranian Regions of Poland.
    Karolina Skonieczna‐Żydecka, Izabela Gorzkowska, Joanna Pierzak‐Sominka, Grażyna Adler.
    Journal of Applied Research in Intellectual Disabilities. January 14, 2016
    Background The prevalence of autism spectrum disorders (ASD) varies worldwide from 1.4/10 000 children in the Arabian Peninsula to 185/10 000 children of Asian population. In Europe, the highest prevalence has been observed in Sweden, while the lowest in Croatia (115/10 000 and 2–3/10 000, respectively). There have been no epidemiological studies on the prevalence of ASD in Polish population. The aim of our study was to assess the prevalence of ASD in children aged 0–16 years, inhabitants of West Pomeranian and Pomeranian regions. Material and Methods In total, 2514 children (2038 males, 81.1%) were included. The estimates were based on the government registries, whereas data were obtained from Provincial Disability Services Commissions. Results The prevalence of ASD in children aged 0–16 years varies between two regions of Poland ‐ 32/10 000 in West Pomeranian and 38/10 000 in Pomeranian region. Conclusions The average prevalence of ASD was 35/10 000 children and was about 4‐fold higher in males (P < 0.05). More studies are necessary.
    January 14, 2016   doi: 10.1111/jar.12238   open full text
  • The Mental Health of British Adults with Intellectual Impairments Living in General Households.
    Chris Hatton, Eric Emerson, Janet Robertson, Susannah Baines.
    Journal of Applied Research in Intellectual Disabilities. December 09, 2015
    Background People with intellectual disability or borderline intellectual functioning may have poorer mental health than their peers. The present authors sought to (i) estimate the risk of poorer mental health among British adults with and without intellectual impairments and (ii) estimate the extent to which any between‐group differences in mental health may reflect between‐group differences in rates of exposure to common social determinants of poorer health. Materials and Methods The present authors undertook secondary analysis of confidentialized unit records collected in Wave 3 of Understanding Society. Results British adults with intellectual impairments living in general households are at significantly increased risk of potential mental health problems than their non‐disabled peers (e.g. GHQ Caseness OR = 1.77, 95% CI (1.25–2.52), P < 0.001). Adjusting for between‐group differences in age, gender and indicators of socio‐economic position eliminated this increased risk [GHQ Caseness adjusted OR = 1.06, 95% CI (0.73–1.52), n.s]. Conclusions Our analyses are consistent with the hypothesis that the increased risk of poor mental health among people with intellectual impairments may be attributable to their poorer living conditions rather than their intellectual impairments per se. Greater attention should be given to understanding and addressing the impact of exposure to common social determinants of mental health among marginalized or vulnerable groups.
    December 09, 2015   doi: 10.1111/jar.12232   open full text
  • Patterns of Somatic Diagnoses in Older People with Intellectual Disability: A Swedish Eleven Year Case–Control Study of Inpatient Data.
    Magnus Sandberg, Gerd Ahlström, Jimmie Kristensson.
    Journal of Applied Research in Intellectual Disabilities. November 06, 2015
    Background Knowledge about diagnoses patterns in older people with intellectual disabilities is limited. Methods The case group (n = 7936) comprised people with intellectual disabilities aged 55 years and older. The control group (n = 7936) was age matched and sex matched. Somatic inpatient diagnoses (2002–2012) were collected retrospectively. Results Several diagnoses were in several years significantly more common in the case group, particularly infections [odds ratio (OR) 1.78–4.08]; nervous system (OR 2.06–31.75); respiratory (OR 1.78–4.08) and genitourinary diseases (1.59–11.50); injuries, unspecified symptoms (OR 1.56–4.27); and external causes of morbidity (OR 1.53–4.08). The oldest in the case group had significantly less occurrence of tumours (OR 0.26–0.51), cardiovascular (OR 0.42–0.72), and musculoskeletal diseases (OR 0.32–0.53) than controls. Conclusions Older people with intellectual disabilities have higher numbers of some diagnoses, but lower numbers of others. Further research on the reasons for the unique pattern of diagnoses in this group is required.
    November 06, 2015   doi: 10.1111/jar.12230   open full text
  • Could Ethical Tensions in Oral Healthcare Management Revealed by Adults with Intellectual Disabilities and Caregivers Explain Unmet Oral Health Needs? Participatory Research with Focus Groups.
    Alessandra Blaizot, Olivier Hamel, Marysette Folliguet, Christian Herve, Jean‐Paul Meningaud, Thomas Trentesaux.
    Journal of Applied Research in Intellectual Disabilities. November 04, 2015
    Background Cognitively impaired patients often present poor oral health status that may be explained by ethical tensions in oral healthcare management. This participatory study explored such tensions among adults with intellectual disabilities and with caregivers. The second objective was to specify, with caregivers, the points that should be developed in a future study among dentists. Materials and Methods Three focus groups involving adults with intellectual disabilities, family caregivers and professional caregivers were organized in France in 2013. Results The thematic content analysis identified discrepancies between experiences and expectations, which were particularly marked for the dentist's competence and attitudes, the dentist's role in decisions, the dental care management and the French socio‐political context. Conclusions These discrepancies could partly explain multiple attempts to find the ‘right’ dentist or the fact that care was abandoned, and could at least contribute to oral health needs being unmet.
    November 04, 2015   doi: 10.1111/jar.12231   open full text
  • On My Own: A Qualitative Phenomenological Study of Mothers of Young Children with Autism Spectrum Disorder in Taiwan.
    Yu‐Chien Hsu, Shu‐Ling Tsai, Mei‐Hui Hsieh, Michael S. Jenks, Chang‐Hsiung Tsai, Min‐Tao Hsu.
    Journal of Applied Research in Intellectual Disabilities. November 03, 2015
    Background There has been a dramatic increase in autism around the world. However, little is known about the impact of the Taiwanese primogeniture system on mothers of children with ASD. Greater knowledge is needed to understand the life experiences of Taiwanese mothers with ASD children when a healthy male descendent is expected. Materials and Methods Research follows the hermeneutic phenomenological approach with in‐depth interviews and participant observation (Agar, Speaking of Ethnography. Sage, California, 1986). The researchers collected and analysed stories from seven mothers who are the major caregivers of their school‐aged autistic children. Results The data revealed the following themes that represented the mothers' experiences: taking the blame, my world was turned upside down, a child‐centred life and two lives as one. Conclusions The findings provide a deeper understanding of common expectations of, and behaviours directed towards, Taiwanese mothers of children with autism. This offers healthcare professionals ways of reconceptualizing therapeutic practice, thus benefitting these mothers.
    November 03, 2015   doi: 10.1111/jar.12229   open full text
  • Employed Carers’ Empathy Towards People with Intellectual Disabilities: The Development of a New Measure and Some Initial Theory.
    Kirsten Collins, Caroline Gratton, Celia Heneage, Dave Dagnan.
    Journal of Applied Research in Intellectual Disabilities. October 29, 2015
    Background This study aimed to develop a self‐report measure of paid caregivers’ empathy towards people with intellectual disabilities. Materials and Methods Following questionnaire develop‐ment, 194 staff working in services for people with intellectual disabilities completed self‐report questionnaires, including the new empathy measure. The measure's factor structure and psychometric properties were investigated. Results A three factor solution suggested two key processes in empathizing: experiencing commonality between one's own and people with intellectual disabilities’ psychological experiences and efforts to attune to their internal worlds. The final factor represented whether carers find it challenging to empathize. Correlations with beliefs about the self and others in caregiving relationships provided initial evidence of validity, although further investigation is needed. Conclusions The most salient processes in empathizing with people with intellectual disabilities may be different from empathy in other contexts. Establishing determinants of carer empathy may facilitate the development of psychological interventions to promote and enhance this important quality.
    October 29, 2015   doi: 10.1111/jar.12226   open full text
  • Self‐Advocacy as a Means to Positive Identities for People with Intellectual Disability: ‘We Just Help Them, Be Them Really’.
    Sian Anderson, Christine Bigby.
    Journal of Applied Research in Intellectual Disabilities. October 29, 2015
    Background Stigma attached to having an intellectual disability has negative implications for the social identities and inclusion of people with intellectual disability. Aim The study explored the effects of membership of independent self‐advocacy groups on the social identity of people with intellectual disability. Method Using a constructivist grounded theory methodology, semi‐structured interviews were conducted with 25 members of six self‐advocacy groups which varied in size, resources, location and policy context: two based in the Australian states of Victoria and Tasmania and four in the UK. Results Collegiality, ownership and control by members characterized groups. They gave members opportunities for paid or voluntary work, skill development and friendship which contributed to their confidence and engagement with life. Possibilities for new more positive identities such as being an expert, a business‐like person, a self‐advocate and an independent person were opened up. Self‐advocacy is an important means of furthering social inclusion of people with intellectual disability.
    October 29, 2015   doi: 10.1111/jar.12223   open full text
  • The Meaning of ‘choice and control’ for People with Intellectual Disabilities who are Planning their Social Care and Support.
    Val Williams, Sue Porter.
    Journal of Applied Research in Intellectual Disabilities. October 25, 2015
    Background This paper questions consumerist assumptions in current English social care policy and aims to look behind the processes of personalization to interrogate what ‘choice and control’ means in the lives of a diverse group of people with intellectual disabilities. Methods Data were from multiple interviews and direct practice recordings with nine people using personal budgets and were analysed using an interpretative approach. Results Identity, other people and personal budget processes were all important for choice and control. People needed to build confidence in themselves as decision‐makers, both through peer support and through joint decisions with trusted others. Conclusions Practitioners need to take into account the spectrum of ways in which people may make decisions. Action needs to be taken both at the micro level of support interactions and at the macro level, with a clearer articulation of independent living in policy and strategy for people with intellectual disabilities.
    October 25, 2015   doi: 10.1111/jar.12222   open full text
  • Marriage, Separation and Beyond: A Longitudinal Study of Families of Children with Intellectual and Developmental Disabilities in a Norwegian Context.
    Jan Tøssebro, Christian Wendelborg.
    Journal of Applied Research in Intellectual Disabilities. October 22, 2015
    Background This study addresses family structure in families raising a child with disabilities in Norway. The aims are to add to the literature on termination of parental relationships and to explore family research topics that are rarely discussed in disability research, such as cohabitation versus marriage and repartnering. Methods Longitudinal survey data on families of children with intellectual and developmental disabilities who were born 1993–1995 were compared with register data on all families of same‐aged children (five waves 1999–2012). Results Parents of children with disabilities had slightly lower termination rates and formalized their partnerships earlier. Furthermore, the rate of repartnering among divorced/separated mothers of young children with disabilities was similar to that of other mothers but decreases later in the child's life course. Conclusions Results support the view that findings diverge and are most likely dependent on context.
    October 22, 2015   doi: 10.1111/jar.12225   open full text
  • Tolerating Uncertainty: Perceptions of the Future for Ageing Parent Carers and Their Adult Children with Intellectual Disabilities.
    Laura Pryce, Alison Tweed, Amanda Hilton, Helena M. Priest.
    Journal of Applied Research in Intellectual Disabilities. October 20, 2015
    Background Improved life expectancy means that more adults with intellectual disabilities are now living with ageing parents. This study explored older families' perceptions of the future. Methods Semi‐structured interviews were conducted with nine older parents and three adults with intellectual disabilities and analysed to produce an explanatory thematic framework. Results ‘Tolerating uncertainty’ was the major theme in participants' attempts to manage anxieties about the future, encompassing sub‐themes of ‘accepting the parenting role’, ‘facing challenges’, ‘being supported/isolated’, ‘positive meaning making’, ‘re‐evaluating as time moves on’ and ‘managing future thinking’. Some participants expressed preferences for their future which were in contrast to their parents' views, and provide a unique perspective that has often been neglected in prior research. Conclusions This research has found commonalities in how families tolerate the uncertainty of the future, but also unique differences that require tailored interventions and prospective action by services.
    October 20, 2015   doi: 10.1111/jar.12221   open full text
  • Can PEP‐3 Provide a Cognitive Profile in Children with ASD? A Comparison Between the Developmental Ages of PEP‐3 and IQ of Leiter‐R.
    Andrea De Giacomo, Francesco Craig, Arcangelo Cristella, Vanessa Terenzio, Maura Buttiglione, Lucia Margari.
    Journal of Applied Research in Intellectual Disabilities. October 06, 2015
    Background The assessment of the intelligence quotient (IQ) in children with autism spectrum disorder (ASD) is important to plan a detailed therapeutic‐educative programme. The aim of the study was to evaluate the usefulness of the Psychoeducational Profile‐third edition (PEP‐3) to estimate the general cognitive development of children with ASD. Method We recruited 30 children with ASD assessed with the Leiter International Performance Scale‐Revised (Leiter‐R) and the PEP‐3. We compared the IQ of the Leiter‐R with the developmental level (DL) of PEP‐3. Results The findings showed a significant positive correlation between IQ with DL of the cognitive verbal/pre‐verbal (P = 0.0005), DL of the area of expressive language (P = 0.0004), DL of the area of receptive language (P = 0.0001), DL of fine motor (P = 0.0066), DL of gross motor (P = 0.0217), DL of visuo‐motor imitation (P = 0.02), DL of communication (P = 0.0001) and DL of motor (P = 0.0063). Conclusions These findings show that the DLs could be considered as indicators of cognitive functioning in ASD.
    October 06, 2015   doi: 10.1111/jar.12216   open full text
  • Physical Activity Engagement in Young People with Down Syndrome: Investigating Parental Beliefs.
    Marianna Alesi, Annamaria Pepi.
    Journal of Applied Research in Intellectual Disabilities. October 05, 2015
    Background Despite the wide documentation of the physical/psychological benefits derived from regular physical activity (PA), high levels of inactivity are reported among people with Down syndrome. This study aims to explore parental beliefs concerning involvement, facilitators/barriers and benefits of PA in young people. Method Semi‐structured interviews were conducted with 13 parents of young people with Down syndrome. Results Three facilitation themes were identified: (i) the support derived from family; (ii) the availability of APA (Adapted Physical Activity) expert instructors and coaches; (iii) the challenging nature of sport activities. Three barrier themes were identified: (i) the lack of APA expert coaches and specialized gyms; (ii) the characteristics of Down syndrome; and (iii) the parental beliefs and worries. Conclusions Family plays a key role, as facilitator and barrier, to the participation of their children with Down syndrome in PA. Crucial is the implementation of evidence‐based exercise programmes involving people with Down syndrome and their families.
    October 05, 2015   doi: 10.1111/jar.12220   open full text
  • Teatime Threats. Choking Incidents at the Evening Meal.
    Susan Guthrie, Jois Stansfield.
    Journal of Applied Research in Intellectual Disabilities. October 02, 2015
    Purpose To explore caregiver perceptions of the socio‐environmental issues around evening meal (‘teatime’) which influence choking. Mealtime difficulties for people with intellectual disabilities and/or mental illness may be underdiagnosed. Difficulties affect quality of life with social aspects impacting on service‐users and caregivers. Reporting of choking incidents has increased locally following widespread training. Analysis of reports showed most incidents were occurring around evening meal. Methodology A qualitative study of caregivers witnessing a choking incident was undertaken. Semi‐structured interviews explored perceptions of the causes. Data were analysed using thematic analysis. Findings Thematic analysis elicited individual service user characteristics, and social and contextual factors implicated in choking. The findings will facilitate risk assessment for service‐users and inform mealtime practice. Staff familiarity is a key factor. Further research involving service‐users is indicated to complement these findings. This study widens the focus of recent studies which have considered physical more than socio‐environmental aspects of mealtime difficulties.
    October 02, 2015   doi: 10.1111/jar.12218   open full text
  • Joint attention behaviours in people with profound intellectual and multiple disabilities: the influence of the context.
    Heleen Neerinckx, Bea Maes.
    Journal of Applied Research in Intellectual Disabilities. October 02, 2015
    Background In spite of the profound cognitive and physical problems, people with profound intellectual and multiple disabilities (PIMD) are able to develop joint attention behaviours (JAB) and benefit from positive interactions. Aims To investigate which context factors influence the JAB of people with PIMD. Method Based on video recordings of 45 participants, JAB and context factors were analysed. Results An unstructured interaction situation produced the most responses of a person with PIMD, whereas a structured interaction situation produced the most initiatives. Furthermore, the familiarity of the partner and the familiarity of objects used in the interaction had no influence on the JAB. The sensitivity of the interaction partner was positively related to the presence of JAB. Conclusions Interaction partners of people with PIMD should be aware of both the ability of people with PIMD to use JAB and the influence of different context factors on these JAB.
    October 02, 2015   doi: 10.1111/jar.12217   open full text
  • FASD Prevalence among Schoolchildren in Poland.
    Katarzyna Okulicz‐Kozaryn, Magdalena Borkowska, Krzysztof Brzózka.
    Journal of Applied Research in Intellectual Disabilities. October 01, 2015
    Background Prenatal Alcohol Exposure is a major cause of brain damage and developmental delay, known as Fetal Alcohol Spectrum Disorders (FASD) but in Poland is rarely diagnosed and the scale of problem is not known. Methods An active case ascertainment approach was applied to estimate the prevalence of FASD among 7–9 years olds. Pre‐screening was conducted in 113 randomly selected regular and special schools. In the screening phase participated 280 children (54% from the risk group, 60% boys). The entire number of eligible students (N = 2500) was taken as a denominator. Results The prevalence of FASD is not lower than 2%, including 0.4% of Fetal Alcohol Syndrome. Conclusions Neurodevelopmental disorders associated with PAE are a serious challenge for the public health system. Development of procedures and services to diagnose and to support individuals affected by PAE and their families is an urgent need in Poland.
    October 01, 2015   doi: 10.1111/jar.12219   open full text
  • Needs and Supports of People with Intellectual Disability and Their Families in Catalonia.
    Rosa Vilaseca, Marta Gràcia, Francesc S. Beltran, Mariona Dalmau, Elisabeth Alomar, Ana Luisa Adam‐Alcocer, David Simó‐Pinatella.
    Journal of Applied Research in Intellectual Disabilities. September 30, 2015
    Background The study assesses the support needs of individuals with intellectual disability and their families in Catalonia. The present authors examine family quality of life (FQoL), identify the individual services required and assess families' perceptions of the extent to which their family member with intellectual disability and they themselves receive the services they need. Materials and Methods The N&S questionnaire (Needs and Supports for people with intellectual disability and their families) was administered to 2160 families with a family member with intellectual disability aged under 70 in Catalonia (Spain). Results Overall mean FQoL was quite high. FQoL was associated with family income, education, employment and percentage level of disability. Neither people with intellectual disability nor their families receive the specific support they need. Conclusions Besides providing specific support for individuals with intellectual disability, local policymakers and practitioners should apply a family‐centred approach to the provision of support for families in order to improve FQoL.
    September 30, 2015   doi: 10.1111/jar.12215   open full text
  • Caring for Adults with Intellectual Disability: The Perspectives of Family Carers in South Africa.
    Judith McKenzie, Roy McConkey.
    Journal of Applied Research in Intellectual Disabilities. September 10, 2015
    Background Internationally adults with intellectual disability are largely cared for by their families, especially in low‐ to middle‐income countries (LAMIC). Compared to high‐income countries, little is known about their experiences in LAMIC such as South Africa. Methods Focus group discussions were carried out with 37 family caregivers (FCGs) in the Cape Town metropole. These were transcribed and analysed thematically. Core categories were identified and validated through member checking. Results Family caregivers showed strong commitment to care despite the heavy responsibility and burden of care that women especially experience. They recognize the limited personal growth opportunities for people with intellectual disability that increases the caregiving burden. FCGs identify supports and resources in the community that assist them with their care responsibilities but often feel let down by services. Conclusions Improved family supports appropriate to the resources in LAMIC are needed especially when existing carers are no longer able to provide care.
    September 10, 2015   doi: 10.1111/jar.12209   open full text
  • From Framework to Practice: Person‐Directed Planning in the Real World.
    Lynn Martin, Philip Grandia, Hélène Ouellette‐Kuntz, Virginie Cobigo.
    Journal of Applied Research in Intellectual Disabilities. September 08, 2015
    Background Person‐directed planning (PDP) is an approach to planning supports that aims to redistribute power from the service system to individuals with intellectual and developmental disabilities (IDD) and natural supports, improve relationships and build community. To do this, the right people with the right attitudes engaging in the right actions are needed. This paper examines how key elements in PDP contribute to successes in planning. Materials/Methods Researchers worked with three planning teams from different community service agencies using participatory action research techniques (i.e. free list and pile sort, Socratic wheel, whys/hows exercise). Results Most key elements of PDP were relevant to each team. Perceptions of which had most contributed to planning successes differed. Conclusions The various elements of PDP are used by and useful to planning teams, although some may be more relevant to some successes than others because of specific goals, or the person's strengths and needs.
    September 08, 2015   doi: 10.1111/jar.12214   open full text
  • The Conundrum of Training and Capacity Building for People with Learning Disabilities Doing Research.
    Melanie Nind, Rohhss Chapman, Jane Seale, Liz Tilley.
    Journal of Applied Research in Intellectual Disabilities. September 02, 2015
    Background This study explores the training involved when people with learning disabilities take their place in the community as researchers. This was a theme in a recent UK seminar series where a network of researchers explored pushing the boundaries of participatory research. Method Academics, researchers with learning disabilities, supporters and other inclusive researchers considered important themes arising from presentations about developments in participatory research. The paper emerges from critical reflection on these rich discussions. Results A seminar series is a form of research training and capacity building, albeit a dynamic, interactive and collegial one. More formal training in research skills for people with learning disabilities is being developed but raises questions regarding the best contribution people with learning disabilities can make to the research process. Conclusion There are various models of training for inclusive research, but these need to be reciprocal if they are not to undermine the inclusive goal.
    September 02, 2015   doi: 10.1111/jar.12213   open full text
  • Project SEARCH UK – Evaluating Its Employment Outcomes.
    Axel Kaehne.
    Journal of Applied Research in Intellectual Disabilities. September 02, 2015
    Background The study reports the findings of an evaluation of Project SEARCH UK. The programme develops internships for young people with intellectual disabilities who are about to leave school or college. The aim of the evaluation was to investigate at what rate Project SEARCH provided employment opportunities to participants. Methods The evaluation obtained data from all sites operational in the UK at the time of evaluation (n = 17) and analysed employment outcomes. Results Data were available for 315 young people (n = 315) in the programme and pay and other employment related data were available for a subsample. The results of the analysis suggest that Project SEARCH achieves on average employment rates of around 50 per cent. Conclusion Project SEARCH UK represents a valuable addition to the supported employment provision in the UK. Its unique model should inform discussions around best practice in supported employment. Implications for other supported employment programmes are discussed.
    September 02, 2015   doi: 10.1111/jar.12207   open full text
  • Exploring How Knowledge Translation Can Improve Sustainability of Community‐based Health Initiatives for People with Intellectual/Developmental Disabilities.
    Natasha A. Spassiani, Sarah Parker Harris, Joy Hammel.
    Journal of Applied Research in Intellectual Disabilities. July 28, 2015
    Community‐based health initiatives (CBHI) play an important role in maintaining the health, function and participation of people with intellectual/developmental disabilities (I/DD) living in the community. However, implementation and long‐term sustainability of CBHI is challenging. The Promoting Action on Research Implementation in Health Services (PARiHS) is a knowledge translation (KT) framework that is particularly relevant to intellectual/developmental disabilities research as it identifies the barriers and facilitators of implementation and action plans. This framework provides a foundation for understanding how KT can be used to aid the implementation and sustainability of CBHI for people with intellectual/developmental disabilities. The following study explores how KT – specifically the PARiHS framework – can be used to help sustain CBHI for people with intellectual/developmental disabilities.
    July 28, 2015   doi: 10.1111/jar.12202   open full text
  • Medical Students’ Attitudes Towards Health Care for People with Intellectual Disabilities: A Qualitative Study.
    Travis A. Ryan, Katrina Scior.
    Journal of Applied Research in Intellectual Disabilities. July 21, 2015
    Background People with intellectual disabilities experience serious health inequalities (e.g. they die younger than people without intellectual disabilities). Medical students’ attitudes towards health care for this population warrant empirical attention because, as tomorrow's doctors, they will affect the health inequalities that people with intellectual disabilities experience. Materials and Methods This study investigated these attitudes by interviewing 17 medical students about medical students’ attitudes towards people with intellectual disabilities and thematically analysing resultant qualitative data. Results Key themes were identified, such as medical students’ worries about working with patients with intellectual disabilities, and their wish for more medical teaching on, and direct experience with, this patient group. Conclusions This study suggests that medical schools need to better prepare medical students for their roles as providers of health care to people with intellectual disabilities by, for example, enhancing their attitudes towards health care for people with intellectual disabilities.
    July 21, 2015   doi: 10.1111/jar.12206   open full text
  • Support Needs of Fathers of Children with ASD: Individual, Family, Community and Ideological Influences.
    Kassi Shave, Bonnie Lashewicz.
    Journal of Applied Research in Intellectual Disabilities. July 14, 2015
    Introduction Fathers are increasingly involved in caring for children, and involvement by fathers of children with ASD is distinctly impacted by added demands of their child's diagnosis. Yet supports for families of children with ASD are not tailored to needs of fathers. We use an ecological framework to examine how fathers’ needs are influenced by contexts ranging from the immediacy of their child's behaviour to overarching expectations for good fathering. Methods We thematically analyse data from semi‐structured interviews with 28 fathers of children with ASD who shared parenting stories of navigating their immediate and broader environments. Findings Fathers are responsive and reflective in their parenting and value recreationally based support activities that include their children. Fathers endorse father‐to‐father support and are interested in mentoring fathers newer to the experience of having a child with ASD. Conclusions Fathers are resourceful parents who compel a critical re‐examination towards advances in father‐friendly practices.
    July 14, 2015   doi: 10.1111/jar.12204   open full text
  • Including Youth with Intellectual Disabilities in Health Promotion Research: Development and Reliability of a Structured Interview to Assess the Correlates of Physical Activity among Youth.
    Carol Curtin, Linda G. Bandini, Aviva Must, Sarah Phillips, Melissa C. T. Maslin, Charmaine Lo, James M. Gleason, Richard K. Fleming, Heidi I. Stanish.
    Journal of Applied Research in Intellectual Disabilities. July 14, 2015
    Background The input of youth with intellectual disabilities in health promotion and health disparities research is essential for understanding their needs and preferences. Regular physical activity (PA) is vital for health and well‐being, but levels are low in youth generally, including those with intellectual disabilities. Understanding the perceptions of and barriers to PA as reported by youth with intellectual disabilities themselves is important for designing effective interventions. Materials and methods We developed a structured interview that queried youth with intellectual disabilities and typically developing youth (ages 13–21 years) about their enjoyment, preferences and perceived barriers to PA. We describe the development of this interview and present its test–retest reliability on 15 youth with intellectual disabilities and 20 typically developing youth. Results Twenty‐three of 33 questions were reliable in both groups. The results suggest that youth with intellectual disabilities can reliably report activities that they do or do not enjoy, as well as their beliefs and perceived benefits of PA. Conclusions Self‐reported information on the experiences, preferences, beliefs and perceptions about among youth with intellectual disabilities is key for research efforts in health promotion and health disparities.
    July 14, 2015   doi: 10.1111/jar.12205   open full text
  • ‘I don't feel trapped anymore…I feel like a bird’: People with Learning Disabilities' Experience of Psychological Therapy.
    Nicola Lewis, Karin Lewis, Bronwen Davies.
    Journal of Applied Research in Intellectual Disabilities. June 29, 2015
    Background There are very few studies that investigate the qualitative experiences of people with a learning disability who have engaged in psychological therapy. Indeed, having a learning disability has traditionally been an exclusion criterion for good quality research about psychological treatments (Psychotherapy and Learning Disability. Council Report CR116. London: Royal College of Psychiatrists, 2004; Journal of Applied Research in Intellectual Disabilities, 19, 2005 and 5). The current research was developed in response to a clinical psychology service recognizing the need to evaluate their psychological service and, as part of this evaluation, the importance of consulting with service users about their experience of psychological therapies. The overall aim of gaining this feedback would be to improve the service offered and to ensure that people receive the best psychological care. Methods Six service users with a learning disability were interviewed about their experience of individual psychological therapy. The interviews were analysed using interpretative phenomenological analysis. Results Themes were generated from the interviews which highlighted both positive and negative feedback on the psychological therapy process. The feedback covered areas such as access to therapy, feelings about therapy, preparing for therapy, skill development and collaborative working, accessibility and making therapy fun, challenges to confidentiality, positive feelings towards the therapist, aspects of the therapeutic relationship, therapy being challenging but helpful, and positive outcomes. Conclusions These results have contributed to the evidence base that people with a learning disability are able to meaningfully engage in research and provide essential feedback on the services that they receive. No longer can people be excluded from individual psychological therapy or research just because of their label.
    June 29, 2015   doi: 10.1111/jar.12199   open full text
  • Paid Support Workers for Adults with Intellectual Disabilities; Their Current Knowledge of Hearing Loss and Future Training Needs.
    Lynzee McShea, John Fulton, Catherine Hayes.
    Journal of Applied Research in Intellectual Disabilities. June 28, 2015
    Background People with intellectual disabilities are more likely to have hearing loss than the general population. For those unable to self‐advocate, the responsibility of detection and management falls to their caregivers. Methods This is the first cycle of a project using action research methodology to improve services. Twenty care workers were interviewed to understand their knowledge of hearing loss and hearing aids. Themes were generated using thematic analysis. Findings This group was better qualified than their peers but received minimal training in hearing loss. They were unable to accurately estimate expected prevalence and had a negative perception of hearing aids. Only 7% of service users were known to have hearing loss. Conclusions Current training is not sufficient to provide the skills for detection and management of hearing problems. This group had clear ideas on methods of learning. Working in collaboration is necessary to achieve long‐term change to practice.
    June 28, 2015   doi: 10.1111/jar.12201   open full text
  • Severe Intellectual Disability: Systematic Review of the Prevalence and Nature of Presentation of Unipolar Depression.
    Catherine Walton, Mike Kerr.
    Journal of Applied Research in Intellectual Disabilities. June 22, 2015
    Background The diagnosis of depression in severe and profound intellectual disability is challenging. Without adequate skills in verbal self‐expression, standardized diagnostic criteria cannot be used with confidence. The purpose of this systematic review was to investigate the assessment and diagnosis of unipolar depression in severe and profound intellectual disability. The review aimed to examine the methods used to assess for depression. The secondary aim was to explore the frequency and symptoms of depression. Methods The PRISMA (2009) Checklist for systematic review was followed, and a search of electronic databases was undertaken. Nine studies were included in the qualitative synthesis from over 2000 records identified. Results The quality of the studies was assessed and scored, with a wide range of results. Individual studies scored between 2 and 7 of a maximum possible score of 8. The diagnostic tools utilized by each of the studies were assessed and compared. Conclusions In terms of the methods used to assess for depression, results were varied. This was due to the heterogeneous nature of the individual study designs. The Aberrant Behaviour Checklist consistently showed promise, in particular when combined with other instruments or clinical examination. Qualitative analysis of the selected studies has shown a wide variation in the quality of primary research in this field, with more required to make firm conclusions regarding the diagnosis, frequency and presentation of depression in severe and profound intellectual disability.
    June 22, 2015   doi: 10.1111/jar.12203   open full text
  • Trauma‐informed Day Services for Individuals with Intellectual/Developmental Disabilities: Exploring Staff Understanding and Perception within an Innovative Programme.
    John M. Keesler.
    Journal of Applied Research in Intellectual Disabilities. June 03, 2015
    Background Trauma‐informed care (TIC) is a systems‐level philosophy of service delivery which integrates choice, collaboration, empowerment, safety and trust to create an organizational culture sensitive to trauma. This study explores staff understandings and perceptions within an innovative trauma‐informed day program for individuals with Intellectual/developmental disabilities. Methods Semi‐structured interviews queried staff members (n = 20) regarding trauma and TIC, the integration of the five principles of TIC, associated challenges and recommendations for improvement. Results Inductive analyses revealed reasonable understandings of trauma and TIC, highlighting factors critical to the five principles of TIC. Differences were associated with duration of employment and the presence of specialized training. Challenges with TIC emerged at different system levels: individuals, staff, management and interorganizational. Conclusions This study presents preliminary insight for the innovative and formative process of integrating TIC with intellectual/developmental disabilities services.
    June 03, 2015   doi: 10.1111/jar.12197   open full text
  • Perspectives of US Direct Care Workers on the Grief Process of Persons with Intellectual and Developmental Disabilities: Implications for Practice.
    Jennifer A. Gray, Maryann Abendroth.
    Journal of Applied Research in Intellectual Disabilities. May 27, 2015
    Background The study explored the grief process of persons with intellectual and developmental disabilities (PWIDDs) as perceived by direct care workers (DCWs) and how such workers can guide and support PWIDDs experiencing grief. Materials and Methods A thematic analysis approach was used to examine data from nine focus groups with 60 DCWs from five community‐based organizations. Results Findings were supported in the context of seminal grief and bereavement theories. Three themes (i.e. reactions to loss, processing the loss and incorporating the loss) and related subthemes emerged from the data. Conclusions PWIDDs are susceptible to traumatic grief, and DCWs are often key witnesses to such experiences. DCWs’ perspectives can guide the development of grief and bereavement training which can lead to more tailored support systems.
    May 27, 2015   doi: 10.1111/jar.12189   open full text
  • Physical Punishment, Mental Health and Sense of Coherence Among Parents of Children with Intellectual Disability in Japan.
    Miyako Kimura, Yoshihiko Yamazaki.
    Journal of Applied Research in Intellectual Disabilities. May 25, 2015
    Background Although sense of coherence (SOC) moderates parental stress, the relationship between SOC, parental mental health and physical punishment of children with intellectual disabilities remains uncertain. The present authors describe parental physical punishment towards children with intellectual disabilities and investigate its related demographic characteristics, SOC and parental mental health. Materials and Methods With the cooperation of Tokyo's 10 special needs schools, the present authors obtained 648 questionnaire responses from parents of children with intellectual disabilities. Results Of the parents, 69.7% reported having physically punished their children with intellectual disabilities. This was positively associated with parents’ younger age, poorer mental health, lower SOC, children's younger age, birth order (firstborns) and disability type (autism/pervasive developmental disorder). Conclusions This is the first study supporting the relationship between SOC, mental health and physical punishment use among parents of children with intellectual disabilities. It may assist the development of strategies to prevent physical abuse of children with disabilities.
    May 25, 2015   doi: 10.1111/jar.12198   open full text
  • Quality of Life and Quality of Support for People with Severe Intellectual Disability and Complex Needs.
    J. Beadle‐Brown, J. Leigh, B. Whelton, L. Richardson, J. Beecham, T. Baumker, J. Bradshaw.
    Journal of Applied Research in Intellectual Disabilities. May 22, 2015
    Background People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life. Methods Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110 people with severe and profound disabilities and complex needs. Results On average, people spent approximately 40% of their time engaged in meaningful activities, received contact from staff 25% of the time (6% in the form of assistance to be engaged). Just over one‐third received consistently good active support, which was associated with other measures of quality of support and emerged as the strongest predictor of outcomes. Conclusions Quality of life and quality of support were relatively poor, although with about one‐third of people receiving skilled support. Consistently good active support was the best predictor of outcome and proposed as a good indicator of skilled support.
    May 22, 2015   doi: 10.1111/jar.12200   open full text
  • Randomized Control Trial of the 3Rs Health Knowledge Training Program for Persons with Intellectual Disabilities.
    Maurice A. Feldman, Frances Owen, Amy E. Andrews, Munazza Tahir, Rachel Barber, Dorothy Griffiths.
    Journal of Applied Research in Intellectual Disabilities. May 05, 2015
    Background Persons with intellectual disabilities (ID) experience a wide range of health problems. Research is needed on teaching persons with intellectual disabilities about their health to promote self‐advocacy. This study used a RCT to evaluate a health knowledge training program for adults with intellectual disabilities and verbal skills. Methods Participants were randomly assigned to training (n = 12) or no training control (n = 10) groups. Topics included key body organs, systems, functions, health maintenance and illnesses. Participants played a game answering questions (e.g. ‘What does the heart do?’). Instruction involved visuals (e.g. PowerPoint slides), cueing, modelling and feedback. The control group received pre‐, post‐ and follow‐up tests as the training group. Results The training group had significantly higher overall post‐test and follow‐up health knowledge test scores than the control group. Conclusions Health knowledge training is one step in promoting health self‐advocacy and better health in persons with intellectual disabilities.
    May 05, 2015   doi: 10.1111/jar.12186   open full text
  • Peer Interactions among Children with Profound Intellectual and Multiple Disabilities during Group Activities.
    Sara Nijs, Anneleen Penne, Carla Vlaskamp, Bea Maes.
    Journal of Applied Research in Intellectual Disabilities. April 27, 2015
    Background Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer‐directed behaviours of children with PIMD, the peer interaction‐influencing behaviour of the direct support workers and the children's positioning. Method Group activities for children with PIMD initiated by a direct support worker were video‐recorded. The behaviour and positioning of the children and the behaviour of the direct support workers were coded. Results Limited peer‐directed behaviour of the children with PIMD and peer interaction‐influencing behaviour of the direct support workers are observed. Weak associations were found between the positioning or peer interaction‐influencing behaviours and the behaviour of children with PIMD. Conclusions Children with PIMD show social interest in each other during group activities. More knowledge is needed to create an environment which facilitates peer‐directed behaviours of persons with PIMD.
    April 27, 2015   doi: 10.1111/jar.12185   open full text
  • The Effectiveness of a Weight Maintenance Intervention for Adults with Intellectual Disabilities and Obesity: A Single Stranded Study.
    Dimitrios Spanos, Catherine R. Hankey, Craig A. Melville.
    Journal of Applied Research in Intellectual Disabilities. April 27, 2015
    Background The evidence base for weight management programmes incorporating a weight loss and a weight maintenance phase for adults with intellectual disabilities (ID) is limited. This study describes the weight maintenance phase of a multicomponent weight management programme for adults with intellectual disability and obesity (TAKE 5). Materials and Methods Thirty‐one participants who had completed the 16 week TAKE five weight loss intervention (Phase I) were invited to participate in a 12 month weight maintenance intervention (Phase II). Content included recommendations of the National Weight Control Registry. Results Twenty‐eight participants completed Phase II with 50.4% maintaining their weight (mean weight change −0.5 kg, SD 2.2), 28.7% gaining weight (mean weight gain 5.4 kg, SD 2.2) and 21.6% losing weight (mean weight loss −8.0 kg, SD 3.0) at 12 months. Conclusion Further research is justified to investigate the efficacy of weight loss maintenance interventions in adults with intellectual disability and obesity, using controlled study designs.
    April 27, 2015   doi: 10.1111/jar.12181   open full text
  • Structured Medication Review to Improve Pharmacotherapy in People with Intellectual Disability and Behavioural Problems.
    Arlette Scheifes, Toine C. G. Egberts, Joost Jan Stolker, Henk. L. I. Nijman, Eibert R. Heerdink.
    Journal of Applied Research in Intellectual Disabilities. April 16, 2015
    Background Polypharmacy and chronic drug use are common in people with intellectual disability and behavioural problems, although evidence of effectiveness and safety in this population is lacking. This study examined the effects of a structured medication review and aimed to improve pharmacotherapy in inpatients with intellectual disability. Methods In a treatment facility for people with mild to borderline intellectual disability and severe behavioural problems, a structured medication review was performed. Prevalence and type of drug‐related problems (DRPs) and of the recommended and executed actions were calculated. Results In a total of 55 patients with intellectual disability and behavioural problems, 284 medications were prescribed, in which a DRP was seen in 106 (34%). No indication/unclear indication was the most prevalent DRP (70). Almost 60% of the recommended actions were also executed. Conclusions This high prevalence of DRPs is worrying. The structured medication review is a valuable instrument to optimize pharmacotherapy and to support psychiatrists in adequate prescribing of both psychotropic and somatic drugs.
    April 16, 2015   doi: 10.1111/jar.12183   open full text
  • Informal Support and Burden among Parents of Adults with Intellectual and/or Developmental Disabilities.
    Suzanne Robinson, Jonathan A. Weiss, Yona Lunsky, Hélène Ouellette‐Kuntz.
    Journal of Applied Research in Intellectual Disabilities. April 15, 2015
    Background Parents often play a lifelong role in supporting their sons and daughters with intellectual and/or developmental disabilities (IDD). There is a need to better understand parent resources, particularly when the individual with IDD has behaviour problems, as the latter has consistently been linked to parental burden. Methods The current study aimed to investigate the relationship between the behaviour support needs of 212 adults with IDD and parental burden, and whether perceived helpfulness of informal supports moderated this relationship. The helpfulness of individual sources of informal support was also explored. Results Informal support was negatively related to burden, although it did not act as a moderator. Individual sources varied in terms of how they were related to burden, but none acted as moderators. Conclusions Although informal social support appears to be important to parents and may help alleviate burden, it does not appear to act as a moderator as anticipated.
    April 15, 2015   doi: 10.1111/jar.12184   open full text
  • Factors Influencing the Use of Psychotropic Medication for Challenging Behaviour in the United Kingdom: A Q Method Investigation.
    Sarah Wastell, Paul Skirrow, Dougal Julian Hare.
    Journal of Applied Research in Intellectual Disabilities. April 08, 2015
    Objectives The use of pharmacological interventions to manage challenging behaviour displayed by adults with intellectual disabilities remains controversial, with current clinical guidelines in the United Kingdom advocating the use of less invasive psychological interventions. This exploratory study aimed to discover what views and beliefs are held by a sample of NHS professionals who provided care and treatment to adults with learning disabilities, about the factors that are influential in the clinical decision‐making process, surrounding the prescription of psychotropic medication, to manage challenging behaviour. Methods Q methodology was used to elucidate the factors considered influential in the clinical decision‐making process, surrounding the prescription of medication to manage challenging behaviour. 55 participants from a range of services across the north–west of England performed a 104 statement Q‐sort task. Results Principle component factor analysis with varimax rotation was performed on the 55 completed Q sorts. This revealed a four factor solution, accounting for 44% of the variance in the data. The factors were interpreted and discussed under the following headings: ‘High‐quality safe ethical practice’, Risk is a rationale for reactive prescribing’, ‘Pragmatic management’ and ‘Contextual issues’. Conclusions The study demonstrated that Q methodology is a useful tool for identifying subjective viewpoints held by a range of professionals, with regard to the factors that influence the clinical decision‐making process surrounding the prescription of medication. The study suggests that services need to identify the wider contextual factors, which are barriers, to the use of less invasive psychological interventions.
    April 08, 2015   doi: 10.1111/jar.12179   open full text
  • Effects on Physical Health of a Multicomponent Programme for Overweight and Obesity for Adults with Intellectual Disabilities.
    Fermín Martínez‐Zaragoza, José M. Campillo‐Martínez, Manuel Ato‐García.
    Journal of Applied Research in Intellectual Disabilities. April 06, 2015
    Background Overweight and obesity are major health risk factors in people with intellectual disabilities. The aim of this study was to test the effectiveness of a multicomponent programme (physical activity, diet and motivation) for overweight and obesity in adults with intellectual disabilities. Material and Methods A quasi‐experimental design with repeated‐measures and non‐equivalent control group (n = 33, n = 31) was used. The programme was conducted over 17 weeks, with follow‐up at 6 months in a sample of Spanish adults with a mild and moderate intellectual disability from a community occupational day centre, aged from 23 to 50, 40.6% of which were women. Results A significant reduction in weight and diastolic blood pressure was obtained over time, and this reduction was maintained in the follow‐up for weight. Reduction in heart rate was only marginally significant. Conclusions The treatment was effective in reducing overweight and obesity, improving cardiovascular capacity and therefore the physical health of the participants.
    April 06, 2015   doi: 10.1111/jar.12177   open full text
  • Employment in Adults with Down Syndrome in the United States: Results from a National Survey.
    Libby Kumin, Lisa Schoenbrodt.
    Journal of Applied Research in Intellectual Disabilities. April 06, 2015
    Background There is no current data about employment/unemployment of adults with Down syndrome in the United States. The data that exists includes adults with Down syndrome as part of the larger group of people with disabilities or people with intellectual disability. Method This study used a survey to investigate paid and volunteer employment, unemployment, types of jobs, job training, job settings, job schedules and job satisfaction in adults with Down syndrome. There were 511 survey responses received. Results Findings were that there is high unemployment for adults with Down syndrome and that current employment is in a limited number of fields, primarily in the areas of food, janitorial work, landscaping, and office work. A small percentage of respondents have full time paid employment. A combination of part time paid employment and unpaid volunteer work is typical. Conclusions Implications for educators, counselors, legislators and employers are discussed.
    April 06, 2015   doi: 10.1111/jar.12182   open full text
  • Understanding Sources of Knowledge for Coaches of Athletes with Intellectual Disabilities.
    Dany J. MacDonald, Katie Beck, Karl Erickson, Jean Côté.
    Journal of Applied Research in Intellectual Disabilities. April 05, 2015
    Background Recent research has investigated development of coaching knowledge; however, less research has investigated the development of coaches who coach athletes with intellectual disabilities. The purpose of this study was to understand how coaches of athletes with intellectual disabilities gain their knowledge. Method Forty‐five Special Olympics Canada coaches participated in structured telephone interviews investigating actual and ideal sources of coaching knowledge. Coaching knowledge was categorized across the dimensions of competition, organization and training. Results Coaches primarily learned by doing and by consulting with coaching peers. Information about ideal sources of coaching knowledge demonstrates that coaches would value structured coaching courses, learning from mentors and from administrative support, in addition to learning on their own and from peers. Discussion Results suggest that a broader approach to education should be incorporated into coaching athletes with intellectual disabilities. Recommendations for achieving such goals are provided.
    April 05, 2015   doi: 10.1111/jar.12174   open full text
  • Factors Contributing to Sexual Violence at Selected Schools for Learners with Mild Intellectual Disability in South Africa.
    Doris Nyokangi, Nareadi Phasha.
    Journal of Applied Research in Intellectual Disabilities. April 05, 2015
    Background This paper reports part of the findings of a study which exposed sexual violence in schools for learners with mild intellectual disability in South Africa. Special attention was paid on factors contributing to such a problem. Methods Data were collected using focus groups and individual interviews with 16 learners with mild intellectual disability at two special schools in South Africa. This was followed by individual interviews with the school nurse and social worker, and an analysis of schools' books of incidents. Results Factors contributing to sexual violence at schools for learners with mild intellectual disability included: (i) peer pressure, (ii) concealment of reported incidents of sexual violence, (iii) unsupervised areas linked to schools and (iv) arranged relationships. Conclusion The following suggestions are put forth: (i) awareness programmes, (ii) sensitization of teachers about the consequences and prevention of sexual violence, (iii) boundaries within which the arranged relationship occurs, (iv) intensification of sexuality education and (v) supervision around the school premises.
    April 05, 2015   doi: 10.1111/jar.12173   open full text
  • Identifying Children with Intellectual Disabilities in the Tribal Population of Barwani District in State of Madhya Pradesh, India.
    Ram Lakhan, Anthony R. Mawson.
    Journal of Applied Research in Intellectual Disabilities. March 31, 2015
    Background Low‐and middle‐income countries (LAMI) lack an integrated and systematic approach to identify people with intellectual disabilities. Screening surveys are considered resource‐intensive; therefore, alternative approaches are needed. This study attempted to identify children up to age 18 years with intellectual disabilities through a mixed‐method approach involving focus group interviews (FGIs) and door‐to‐door surveys. Materials and Methods Focus groups were conducted with the assistance and involvement of local leaders in four villages of Barwani district of Madhya Pradesh with a 99% tribal population in all four villages. A formal survey of the community was then conducted to determine the prevalence of intellectual disabilities based on a standardized screening instrument (NIMH‐DDS). Results Thirty focus group interviews were conducted involving 387 participants (males 284, females 103) over a period of 13 days. The entire adult population (N = 8797) was then surveyed for intellectual disabilities using a standardized screening instrument. The data revealed a close similarity in the prevalence rates of intellectual disabilities, as determined by the two approaches (Focus Group Interviews, 5.22/1000 versus Survey, 5.57/1000). Conclusion A qualitative method using FGIs successfully identified people with intellectual disabilities in an economically deprived tribal area, showing that a community‐based approach provides a close estimate of intellectual disabilities based on a formal survey using standard diagnostic criteria. These data suggest that FGI, along with other qualitative data, could be helpful in designing and in serving as an entree for community‐based interventions.
    March 31, 2015   doi: 10.1111/jar.12171   open full text
  • Adult Siblings Consider the Future: Emergent Themes.
    Deborah Davys, Duncan Mitchell, Carol Haigh.
    Journal of Applied Research in Intellectual Disabilities. March 26, 2015
    Background This study aimed to explore the perceptions of adult siblings regarding a future care role and compare with perceived parental wishes as family often provide a key support role in the lives of people who have an intellectual disability. Materials and Method Semi‐structured interviews were undertaken with 15 adult siblings and an approach aligned to IPA was used to analyse the results. Results Emergent themes demonstrated that intellectual disability has an impact upon sibling lives yet the degree and range of impact varies. Most participants were concerned about the future, service issues were raised as was futures planning, siblings' needs, the positive impact of intellectual disability and influence of life stage upon care giving. Conclusion The findings highlight that whilst the impact of intellectual disability upon adult siblings is variable, siblings are concerned about the future, and that life stage and circumstance appear to influence care giving.
    March 26, 2015   doi: 10.1111/jar.12172   open full text
  • Practice Leadership at the Front Line in Supporting People with Intellectual Disabilities and Challenging Behaviour: A Qualitative Study of Registered Managers of Community‐based, Staffed Group homes.
    Roy Deveau, Peter McGill.
    Journal of Applied Research in Intellectual Disabilities. March 25, 2015
    Background The front‐line management role in services for people with intellectual disabilities remains rather under‐researched. The aim of this study was to examine the experiences of registered managers in services for adults with intellectual disability who exhibit challenging behaviour. Method Interviews, primarily focussed upon staff practice, were conducted with 19 managers of staffed group homes in SE England. Transcripts were analysed using interpretive phenomenological analysis. Results Five groups of themes emerged: monitoring staff performance, supporting new ways of working, shaping staff performance, influence of external and employing agencies, and importance of participants' personal values and experiences. Conclusion The themes identified contribute to a conceptual framework for thinking about front‐line management/practice leadership. The limitations, and potential implications, of the findings are discussed.
    March 25, 2015   doi: 10.1111/jar.12178   open full text
  • The Characteristics of Local Support Systems, and the Roles of Professionals, in Supporting Families where a Mother has an Intellectual Disability.
    Ingrid Weiber, Mona Eklund, Per‐Anders Tengland.
    Journal of Applied Research in Intellectual Disabilities. March 06, 2015
    Background There might be a need for support for families where the mother has an intellectual disability, in order to counteract the effects of potential parental inadequacy and other detrimental aspects of the family situation. The purpose of this study was to describe how professionals characterized such support and the collaboration required. Materials and methods Focus group interviews involving 29 professionals were conducted and analysed using content analysis. Results Five themes were identified: The roles and activities of the professionals involved; ways in which needs of support are identified; problems in identifying mothers with an intellectual disability; how professionals coordinate their support and work together; and the dilemma concerning legislative actions. Conclusions By identifying both fruitful and problematic aspects of professional support, the findings may be used to enhance future support. More efficient chains of information and improved inter‐sector collaboration between professions may further enhance the support practices.
    March 06, 2015   doi: 10.1111/jar.12169   open full text
  • Quality of Diagnosis and Treatment Plans After Using the ‘Diagnostic Guideline for Anxiety and Challenging Behaviours’ in People with Intellectual Disabilities: A Comparative Multiple Case Study Design.
    Addy Pruijssers, Berno Meijel, Marian Maaskant, Noortje Keeman, Theo Achterberg.
    Journal of Applied Research in Intellectual Disabilities. March 01, 2015
    Background People with intellectual disabilities often have a multitude of concurrent problems due to the combination of cognitive impairments, psychiatric disorders (particularly anxiety) and related challenging behaviours. Diagnoses in people with intellectual disabilities are complicated. This study evaluates the quality of the diagnoses and treatment plans after using a guideline that was developed to support professionals in their diagnostic tasks. Materials and Methods A comparative multiple case study with an experimental and control condition, applying deductive analyses of diagnoses and treatment plans. Results The analyses revealed that the number of diagnostic statements and planned treatment actions in the experimental group was significantly larger and more differentiated than in the control condition. In the control group, consequential harm and protective factors were hardly mentioned in diagnoses and treatment plans. Conclusions Working with the ‘Diagnostic Guideline for Anxiety and CB’ leads to improved diagnoses and treatment plans compared with care as usual.
    March 01, 2015   doi: 10.1111/jar.12180   open full text
  • The Adaptation of a School‐based Health Promotion Programme for Youth with Intellectual and Developmental Disabilities: A Community‐Engaged Research Process.
    Kristie L. Hubbard, Linda G. Bandini, Sara C. Folta, Brian Wansink, Aviva Must.
    Journal of Applied Research in Intellectual Disabilities. June 03, 2014
    Background Evidenced‐based health promotion programmes for youth with intellectual and developmental disabilities (I/DD) are notably absent. Barriers include a lack of understanding of how to adapt existing evidence‐based programmes to their needs, maximize inclusion and support mutual goals of health and autonomy. Methods We undertook a community‐engaged process to adapt a school‐based nutrition intervention in a residential school for youth with I/DD. Focus groups and interviews with school staff elicited recommendations for adaptation strategies; these were then reviewed by an expert panel. Results Adaptations were developed to address needs in three categories: food‐related challenges among students, adjusting to change and transition and social environment factors. Choice and heterogeneity were overarching themes across the adaptation categories. Conclusions Future research should consider community‐engaged approaches for adaptation so that youth with I/DD can participate and benefit from evidence‐based health promotion programmes to their maximum potential.
    June 03, 2014   doi: 10.1111/jar.12104   open full text
  • Identifying the Key Concerns of Irish Persons with Intellectual Disability.
    Edurne García Iriarte, Patricia O'Brien, Roy McConkey, Marie Wolfe, Siobhain O'Doherty.
    Journal of Applied Research in Intellectual Disabilities. May 22, 2014
    Background Internationally, people with intellectual disability are socially marginalized, and their rights under the United Nations Convention for the Rights of Persons with Disabilities (CRPD) are often ignored. Aims This paper aims to define the key concerns of adults with an intellectual disability in relation to their participation in society using an inclusive research strategy for both data gathering and data analysis. Methods A national study involving 23 focus groups and 168 persons was conducted on the island of Ireland with people with intellectual disability as co‐facilitators. Findings A thematic content analysis was undertaken of the verbatim transcripts initially by university co‐researchers, and 19 themes were identified. Co‐researchers with intellectual disability joined in identifying the eight core themes. These were as follows: living options, employment, relationships, citizenship, leisure time, money management, self‐advocacy, and communication. Discussion The concerns are discussed within the framework of the CRPD, and implications for transforming service policy are drawn. Accessible Abstract Why we did the research In many countries, people with intellectual disability have difficulties doing things other people without disabilities do, for example to study, to get a job or to live independently. They also find that their rights are not respected under the Convention on the Rights of Persons with Disabilities (the Convention). We did this study to Learn what are the main issues for adults with intellectual disability in Ireland. Do research with people with intellectual disability. How we did the research People with intellectual disability and their supporters worked with university researchers to plan and do the research. We met with people in groups and 168 people told us about things important to them. What we found out We found that there were very important things that people talked about in the groups. We chose the most important: living options, employment, relationships, rights, leisure, money, self‐advocacy, and communication. We talk about the Convention and why things people told us are important for services.
    May 22, 2014   doi: 10.1111/jar.12099   open full text
  • Ageing and Dementia in a Longitudinal Study of a Cohort with Down Syndrome.
    Janet Carr, Suzanne Collins.
    Journal of Applied Research in Intellectual Disabilities. March 28, 2014
    Background A population sample of people with Down syndrome has been studied from infancy and has now been followed up again at age 47 years. Methods Intelligence and language skills were tested and daily living skills assessed. Memory/cognitive deterioration was examined using two test instruments. Results Scores on verbal tests of intelligence changed little. Those on a non‐verbal test, on self‐help skills and on both memory tests showed some decline, even when the scores of those already suffering from dementia were discounted. Conclusions At age 47, scores on most tests of even the majority of the cohort (i.e. those not definitely diagnosed with dementia) showed some decline. While this includes the scores of people who may subsequently develop dementia, it may also reflect the normal ageing process in this population.
    March 28, 2014   doi: 10.1111/jar.12093   open full text
  • Parent Report of Conversations with Their Adolescents with Intellectual Disability.
    Jennifer L. Jones, Lauren M. Oseland, Kathryn L. Morris, Robert E. Larzelere.
    Journal of Applied Research in Intellectual Disabilities. February 12, 2014
    Background The purpose of this study was to examine parent report of conversations about difference and disability in families of adolescents with intellectual disability. Materials and Methods Participants included 50 parents (44 mothers, four fathers, and two other caregivers) and their adolescents with intellectual disability (M age = 15.9). Parents provided written responses to open‐ended questions regarding conversations with their adolescent. Adolescents completed measures of self‐concept and self‐determination. Results The majority (66%) of parents reported talking to their adolescent about difference and/or disability. Consistent with previous research, some of these conversations were in response to social exclusion (e.g. child was bullied). Parents who knew the aetiology of their child's disability were significantly more likely to talk with their child about his or her disabling condition. Conclusions Parents' narratives illustrate their struggle to explain disability to their adolescent. Professionals are challenged to consider how to promote proactive conversations between parents and adolescents.
    February 12, 2014   doi: 10.1111/jar.12090   open full text
  • The Experiences of Intimate Relationships by People with Intellectual Disabilities: A Qualitative Study.
    Elizabeth Rushbrooke, Craig Murray, Samantha Townsend.
    Journal of Applied Research in Intellectual Disabilities. January 30, 2014
    Background People with intellectual disabilities face attitudinal and service barriers when attempting to form intimate relationships. To date, their experiences and views are under‐represented in the existing evidence base. Method The aim of this study was to carry out an interpretative phenomenological analysis exploring the experience of intimate relationships for nine adults with intellectual disabilities. Results Four main themes were identified: desiring relationships; expressing sexuality; having relationships; and who has control? Together these themes demonstrated that intimate relationships were desired and important to all participants, fulfilling a variety of their needs. In addition, participants faced a number of challenges related to intimate relationships. Conclusion The findings raise questions about how best to support people with intellectual disabilities with sexuality and intimate relationships. Implications for caregivers and services are discussed.
    January 30, 2014   doi: 10.1111/jar.12091   open full text
  • Perspectives of Employees with Intellectual Disabilities on Themes Relevant to Their Job Satisfaction. An Explorative Study using Photovoice.
    Alma Akkerman, Cees G. C. Janssen, Sabina Kef, Herman P. Meininger.
    Journal of Applied Research in Intellectual Disabilities. January 27, 2014
    Background This study explored the perspectives of people with intellectual disabilities on themes relevant to their job satisfaction in integrated and sheltered employment. Method The photovoice method was used. Nine participants with moderate to mild intellectual disabilities, working in integrated and sheltered employment, took pictures of aspects related to their job satisfaction. Each participant was subsequently interviewed about his/her pictures. Interview transcripts were content analysed to distinguish themes. Results Nine themes were found: the nature of the work itself, working conditions, experienced job demands, social relations at work, received support, perceived autonomy, opportunities for using competencies, opportunities for growth and development and meaningfulness. All themes were applicable in integrated and sheltered employment. Conclusions From the perspective of people with intellectual disabilities, various themes relate to their job satisfaction, either in positive or negative ways. Photovoice appeared to be a valuable approach, facilitating participants in expressing their views and providing in‐depth information.
    January 27, 2014   doi: 10.1111/jar.12092   open full text
  • The Training Needs of Staff Supporting Individuals Ageing with Intellectual Disability.
    Stuart Wark, Rafat Hussain, Helen Edwards.
    Journal of Applied Research in Intellectual Disabilities. January 17, 2014
    Background The issue of ageing within the cohort of people with intellectual disabilities has been an increasing focus for research. However, the training needs of the staff who support them has not been subject of extensive examination. Materials and Methods A multiround Delphi project was conducted focusing upon the impact ageing issues have on the support provided by disability workers, and what training is required to address the identified areas. Results Three rounds of the Delphi identified twenty‐six separate important issues. A thematic analysis identified five main themes including Generic Training Issues; Medical Issues; Emerging Ageing Issues Requiring Changing Support; Mental Health Issues; and Quality of Life. Conclusions The study identified a series of training priorities for staff assisting people ageing with an intellectual disability. It would appear possible for many training programmes to be developed and delivered with minimal cost impacts even within rural localities.
    January 17, 2014   doi: 10.1111/jar.12087   open full text
  • Visual Habituation Paradigm With Adults With Profound Intellectual and Multiple Disabilities: A New Way for Cognitive Assessment?
    Melissa Chard, Jean‐Luc Roulin, Martine Bouvard.
    Journal of Applied Research in Intellectual Disabilities. November 29, 2013
    Background The use of common psychological assessment tools is invalidated with persons with PIMD. The aim of this study was to test the feasibility of using a visual habituation procedure with a group of adults with PIMD, to develop a new theoretical and practical framework for the assessment of cognitive abilities. Methods To test the existence of the habituation/novelty reaction phenomenon with adults with PIMD, fifteen participants were exposed repeatedly to two different objects, following the principles of a participant‐controlled procedure. Results Both qualitative and quantitative analyses were carried out. Participants presented the same habituation profiles generally obtained in infancy research. Conclusion Stimulus presentation has a significant impact on the participants' visual behaviour and fixation measurement appears to be an interesting indicator as to how an individual with PIMD is able to process external information. The elaboration of perceptual tasks based on a visual habituation method is one of the major implications of these results.
    November 29, 2013   doi: 10.1111/jar.12079   open full text
  • Employer Attitudes Towards the Work Inclusion of People With Disability.
    Laura Nota, Sara Santilli, Maria C. Ginevra, Salvatore Soresi.
    Journal of Applied Research in Intellectual Disabilities. November 29, 2013
    Background This study examines the importance of work in life of people with disability and then focuses on employer attitudes towards these people. In the light of Stone and Colella's model, the study examines the employer attitudes and the role of variables such as type of disability, employer experience in the hiring of persons with disabilities, the description of hypothetical hirees with disabilities, the ways in which employers evaluate work performance and social acceptability, and the work tasks that they consider appropriate for workers with disability. Method Eighty employers were randomly assigned to standard condition (candidates with disability were presented by referring to the disability they presented) or positive condition (candidates were presented with reference to their strengths). Results It was found that the type of disability and its presentation influence employer attitudes. In addition, realistic and conventional tasks were considered appropriate for hirees with disabilities. Conclusions Implications were discussed.
    November 29, 2013   doi: 10.1111/jar.12081   open full text
  • Contact with Primary Care: The Experience of People with Intellectual Disabilities.
    Jonathan Perry, David Felce, Mike Kerr, Stuart Bartley, Judith Tomlinson, Janet Felce.
    Journal of Applied Research in Intellectual Disabilities. September 13, 2013
    Background People with intellectual disabilities experi‐ence disparities in their health and health care. Annual health checks are intended to counter such disparity by improving access to primary health care. However, little is known about their experience of having a health check or other types of contact with primary care services. Materials and Methods The findings of two studies which used focus groups were combined. 102 people with intellectual disabilities participated in the focus groups. Results Participants' experiences of primary care services generally, and health checks in particular, were positive. However, unanimity was rare on any of the topics discussed and a number of areas of dissatisfaction emerged. Conclusions Further studies with larger and more representative samples are necessary as feedback from people with intellectual disabilities about their experience of contact with primary care staff might help to enhance GP knowledge about their health requirements.
    September 13, 2013   doi: 10.1111/jar.12072   open full text
  • Caring for a Child with Learning Disabilities Over a Prolonged Period of Time: An Exploratory Survey on the Experiences and Health of Older Parent Carers Living in Scotland.
    Deborah Cairns, Jayne Brown, Debbie Tolson, Chris Darbyshire.
    Journal of Applied Research in Intellectual Disabilities. September 13, 2013
    Background The negative health impacts of prolonged caregiving are widely reported. However, there is a paucity of evidence concerning the impacts of a lifetime of caring on older parents of offspring with learning disabilities. Design and Methods An exploratory postal survey including the Medical Outcome Study (Short Form) 36 version 2 (SF‐36v2) was completed by 100 older parent carers. The reported survey is part of a larger mixed method study including in‐depth interviews. Results The majority of respondents (n = 91) reported caring for 50 h or more per week with multiple caregiving duties. While the SF‐36v2 reported physical health of older parent carers to be similar to UK norms, their mental health was significantly reduced. Implications for practice These important findings highlight the vulnerability of ageing parents of offspring with learning disabilities. This previously underreported situation warrants further investigation and urgent attention from health and social care agencies and professionals.
    September 13, 2013   doi: 10.1111/jar.12071   open full text
  • Attachment in Adults with Intellectual Disabilities: Preliminary Investigation of the Psychometric Properties of the Manchester Attachment Scale–Third Party Observational Measure.
    Victoria Penketh, Dougal Julian Hare, Andrea Flood, Samantha Walker.
    Journal of Applied Research in Intellectual Disabilities. September 10, 2013
    Background The Manchester Attachment Scale–Third party observational measure (MAST) was developed to assess secure attachment style for adults with intellectual disabilities. The psychometric properties of the MAST were examined. Materials and Methods Professional carers (N = 40) completed the MAST and measures related to the construct of attachment theory [Edward Zigler‐Yale Personality Questionnaire (EZPQ), Emotional Rating Scale (ERS) and the Learning Disability Casemix Scale (LDCS)] regarding individuals with an intellectual disability (N = 57). Individuals with an intellectual disability (N = 14) completed the Self‐report Assessment of Attachment Security (SRAAS). Results The MAST was found to have good internal consistency, test–retest reliability and convergent validity. MAST scores were negatively correlated with level of intellectual disability and challenging behaviour (CB) as measured by LDCS. Conclusions Support was provided for the reliability and validity of the MAST and a relationship between attachment security, level of intellectual disability and CB. The results of the study and implications of attachment theory for service provision are discussed.
    September 10, 2013   doi: 10.1111/jar.12070   open full text
  • Beyond the Impasse? Systemic Consultation and Understanding Complex Cases.
    Paul Rhodes, Michelle Donelly, Lesley Whatson, Kate Brearley, Jack Dikian, Anders Hansson, Tanya Franic, Lucinda Mora.
    Journal of Applied Research in Intellectual Disabilities. September 04, 2013
    Background Systemic consultation provides an oppor‐tunity for clinicians working with complex cases and behaviours of concern to reflect on interpersonal dynamics that may be inhibiting change. This approach to case review is drawn from systemic family therapy, a model that is gaining some acceptance within the field of intellectual disability. Method Thematic analysis was used to explore the experience of eleven clinicians attending systemic consultation. Clinicians were experienced in behaviour support, had no prior experience in family therapy and presented with complex cases described as ‘stuck’. Results Consultations were seen to have many benefits, including a heightened awareness of the interpersonal needs of both clients and carers and the development of a facilitative position and skills to apply to cases. Less experienced clinicians were more likely to feel overwhelmed by this less structured, more relationally oriented focus. Conclusions Systemic consultation has the potential to augment behaviour support, enabling clinicians to understand and negotiate problematic interpersonal dynamics when responding to behavioural difficulties. Less experienced clinicians may require additional training and support in the systemic approach.
    September 04, 2013   doi: 10.1111/jar.12068   open full text
  • Restraint and Seclusion: The Perspective of Service Users and Staff Members.
    Julie Mérineau‐Côté, Diane Morin.
    Journal of Applied Research in Intellectual Disabilities. August 22, 2013
    Background Restrictive measures may have important physical and psychological consequences on all persons involved. The current study examined how these are perceived by persons with intellectual disabilities and staff. Materials and Methods Interviews were conducted with eight persons with intellectual disabilities who experienced a restrictive measure and their care providers. They were queried on their understanding of the restrictive measure, its impact on the relationship, their emotions and alternative interventions. Results Restrictive measures were experienced negatively by persons with intellectual disabilities and their care providers. Service users reported feeling sad and angry, whereas staff mentioned feeling anxious. Moreover, persons with intellectual disabilities appeared to understand the goal of restrictive measures (e.g. ensuring their own and others' safety) and identified alternative interventions (e.g. speaking with a staff member or taking a walk). Conclusion This study sheds further light on how persons with intellectual disabilities and staff experience the application of restrictive measures. Debriefing sessions with service users and staff may help minimize negative consequences.
    August 22, 2013   doi: 10.1111/jar.12069   open full text
  • Men with Intellectual Disabilities who have Attended Sex Offender Treatment Groups: A Follow‐Up.
    Kathryn M. Heaton, Glynis H. Murphy.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background There have been a number of studies of treatment for men with intellectual disabilities and sexually abusive behaviour but few follow‐up studies. Our aim was to follow up men with intellectual disabilities who had attended group cognitive behavioural treatment (CBT) for sexually abusive behaviour. Method Thirty‐four men (from seven treatment sites) were followed up. All had attended SOTSEC‐ID groups. The mean length of follow‐up, since the end of the treatment group, was 44 months (SD 28.7, range 15–106 months). Results The statistically significant improvements in sexual knowledge, empathy and cognitive distortions that occurred during treatment were maintained at follow‐up. In all, 11 of the 34 (32%) men showed further sexually abusive behaviour, but only two of these men received convictions. Analyses of the variables associated with further sexually abusive behaviour indicated that a diagnosis of autism was associated with a higher likelihood of further sexually abusive behaviour. Conclusions This study provides some evidence of the longer‐term effectiveness of group CBT for men with intellectual disabilities and sexually abusive behaviour.
    August 08, 2013   doi: 10.1111/jar.12038   open full text
  • Using Behavioural Skills Training to Treat Aggression in Adults with Mild Intellectual Disability in a Forensic Setting.
    Robert W. Travis, Peter Sturmey.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background Previous studies of anger management in people with intellectual disability failed to control for the effects of the number of provocative stimuli presented and lacked direct measures of behaviour and treatment integrity data. Methods This experiment systematically assessed and presented discriminative stimuli for aggressive behaviour, taught alternative behaviour in response to discriminative stimuli for aggressive behaviour and used behavioural skills training with three adults with mild intellectual disability. Results Following behavioural skills training, the adult's percentage of aggressive responses declined and replacement responses increased in response to provocative stimuli. Treatment gains generalized to novel antecedent events, novel staff and novel settings and were socially valid. After intervention, community trips increased for all three participants. Conclusions Behavioural skills training to teach alternate behaviour to aggression with carefully planned procedures to promote generalization caused a socially valid increase in alternate behaviour and a socially valid decrease in aggression.
    August 08, 2013   doi: 10.1111/jar.12033   open full text
  • ‘Counterfeit Deviance’ Revisited.
    Dorothy Griffiths, Dave Hingsburger, Jordan Hoath, Stephanie Ioannou.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background The field has seen a renewed interest in exploring the theory of ‘counterfeit deviance’ for persons with intellectual disability who sexually offend. The term was first presented in 1991 by Hingsburger, Griffiths and Quinsey as a means to differentiate in clinical assessment a subgroup of persons with intellectual disability whose behaviours appeared like paraphilia but served a function that was not related to paraphilia sexual urges or fantasies. Case observations were put forward to provide differential diagnosis of paraphilia in persons with intellectual disabilities compared to those with counterfeit deviance. The brief paper was published in a journal that is no longer available and as such much of what is currently written on the topic is based on secondary sources. Method The current paper presents a theoretical piece to revisit the original counterfeit deviance theory to clarify the myths and misconceptions that have arisen and evaluate the theory based on additional research and clinical findings. The authors also propose areas where there may be a basis for expansion of the theory. Results The theory of counterfeit deviance still has relevance as a consideration for clinicians when assessing the nature of a sexual offence committed by a person with an intellectual disability. Clinical differentiation of paraphilia from counterfeit deviance provides a foundation for intervention that is designed to specifically treat the underlying factors that contributed to the offence for a given individual. Discussion Counterfeit deviance is a concept that continues to provide areas for consideration for clinicians regarding the assessment and treatment of an individual with an intellectual disability who has sexually offended. It is not and never was an explanation for all sexually offending behavior among persons with intellectual disabilities.
    August 08, 2013   doi: 10.1111/jar.12034   open full text
  • A Comparison of Anger in Offenders and Non‐Offenders Who have Intellectual Disabilities.
    Matthew Nicoll, Nigel Beail.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background There is growing evidence of the effectiveness of cognitive behavioural therapy to treat anger in offenders with intellectual disabilities. The aim is to lower anger levels; the rationale is that this will reduce recidivism. However, the hypothesis that anger levels amongst offenders are higher than non‐offenders has not been tested. Method The study utilizes a case‐comparison design to examine whether levels of anger are higher amongst people with intellectual disabilities who have offended in comparison with those who have not offended. Anger levels are compared for 29 offenders with intellectual disabilities and 27 non‐offenders with intellectual disabilities (all male). Results No differences were found between offenders and non‐offenders on measures of anger. The offending group was shown to have higher levels of aggression. Conclusions Results suggest that there is no difference in levels of anger between offender and non‐offenders to begin with. The limitations of the study are discussed, but the implication of the study questions the legitimacy of the rationale to utilize anger treatment to reduce recidivism in offenders with intellectual disabilities.
    August 08, 2013   doi: 10.1111/jar.12035   open full text
  • The Social Information Processing Model as a Framework for Explaining Frequent Aggression in Adults with Mild to Moderate Intellectual Disabilities: A Systematic Review of the Evidence.
    Peter Larkin, Andrew Jahoda, Ken MacMahon.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background There is an established evidence base con‐cerning the use of anger management interventions with violent offenders who have intellectual disabilities. However, there has been limited research investigating the role of social cognitive factors underpinning problems of aggression. Psychosocial sources of agg‐ression in the non‐disabled population are generally discussed using Social Information Processing (SIP) models. Method A systematic review of the available evidence was carried out to establish whether SIP offers a useful explanatory model for understanding the contribution of social cognitive factors to problems of aggression presented by people with intellectual disabilities. Results and conclusions Whilst research relating to the SIP model remains sparse for this population, there was evidence for different patterns of processing between aggressive and non‐aggressive individuals. Group diff‐erences included interpretation of emotional cues, inter‐personal attributions and beliefs about the outcomes of aggressive behaviour. The future direction of SIP research with people who have intellectual disabilities is discussed, along with the possibility of using this framework to help build on current initiatives to develop individually tailored interventions to work at a cognitive level with those who are aggressive and offend.
    August 08, 2013   doi: 10.1111/jar.12031   open full text
  • Face Recognition and Description Abilities in People with Mild Intellectual Disabilities.
    Julie Gawrylowicz, Fiona Gabbert, Derek Carson, William R. Lindsay, Peter J. B. Hancock.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background People with intellectual disabilities (ID) are as likely as the general population to find themselves in the situation of having to identify and/or describe a perpetrator's face to the police. However, limited verbal and memory abilities in people with ID might prevent them to engage in standard police procedures. Method Two experiments examined face recognition and description abilities in people with mild intellectual disabilities (mID) and compared their performance with that of people without ID. Experiment 1 used three old/new face recognition tasks. Experiment 2 consisted of two face description tasks, during which participants had to verbally describe faces from memory and with the target in view. Results Participants with mID performed significantly poorer on both recognition and recall tasks than control participants. However, their group performance was better than chance and they showed variability in performance depending on the measures introduced. Conclusions The practical implications of these findings in forensic settings are discussed.
    August 08, 2013   doi: 10.1111/jar.12028   open full text
  • Autism Spectrum Disorder: Forensic Issues and Challenges for Mental Health Professionals and Courts.
    Ian Freckelton.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Autism spectrum disorder (ASD), as defined in DSM‐V, can be relevant in a variety of ways to decision‐making by courts and tribunals. This includes the family, disciplinary, discrimination and criminal law contexts. By reviewing decisions made by superior courts in a number of common law jurisdictions, this article identifies a pivotal role for mental health professionals closely familiar with both the disorder and forensic exigencies to educate courts about the inner world of those with ASD. Highlighting areas of criminality that court decisions have dealt with, especially in relation to persons with Asperger's Disorder, as defined by DSM‐IV, it calls for further research on the connection between ASD, on the one hand, and conduct, capacities and skills, on the other hand. It urges enhancement of awareness of the forensic repercussions of the disorder so that expert evidence can assist the courts more humanely and informedly to make criminal justice and other decisions.
    August 08, 2013   doi: 10.1111/jar.12036   open full text
  • Different Factors Influence Self‐Reports and Third‐Party Reports of Anger by Adults with Intellectual Disabilities.
    John Rose, Paul Willner, Jennifer Shead, Andrew Jahoda, David Gillespie, Julia Townson, Claire Lammie, Christopher Woodgate, Biza Stenfert Kroese, David Felce, Pamela MacMahon, Nikki Rose, Aimee Stimpson, Jacqueline Nuttall, Kerenza Hood.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background Many people with intellectual disabilities display high levels of anger, and cognitive‐behavioural anger management interventions are used routinely. However, for these methods to be used optimally, a better understanding is needed of different forms of anger assessment. The aim of this study was to investigate the relationship of a range of measures to self‐ and carer reports of anger expression, including instruments used to assess mental health and challenging behaviour. Method Adults with intellectual disabilities, who had been identified as having problems with anger control, their key‐workers and home carers all rated the service users’ trait anger, using parallel versions of the same instrument (the Provocation Inventory). In addition, service users completed a battery of mental health assessments (the Glasgow Depression Scale, Glasgow Anxiety Scale and Rosenberg Self‐Esteem Scale), and both groups of carers completed a battery of challenging behaviour measures (the Hyperactivity and Irritability domains of the Aberrant Behavior Checklist and the Modified Overt Anger Scale). Results Participants had high levels of mental health problems (depression: 34%; anxiety: 73%) and severe challenging behaviour (26%). Hierarchical linear regression analysis was used to explore the extent to which anger ratings by the three groups of respondents were predicted by demographic factors, mental health measures and challenging behaviour measures. Older service users rated themselves as less angry and were also rated as less angry by home carers, but not by key‐workers. More intellectually able service users were rated as more angry by both sets of carers, but not by the service users themselves. Significantly, mental health status (but not challenging behaviour) predicted service users’ self‐ratings of anger, whereas challenging behaviour (but not mental health status) predicted carers’ ratings of service users’ anger. Conclusions Service users and their carers appear to use different information when rating the service users’ anger. Service users’ self‐ratings reflect their internal emotional state and mental health, as reflected by their ratings of anxiety and depression, whereas staff rate service users’ anger on the basis of overt behaviours, as measured by challenging behaviour scales.
    August 08, 2013   doi: 10.1111/jar.12037   open full text
  • Pathways into the Criminal Justice System for Individuals with Intellectual Disability.
    Poonam Raina, Tamara Arenovich, Jessica Jones, Yona Lunsky.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background Studies focusing on pathways in the criminal justice system for individuals with intellectual disability are limited in that they only study individuals once they are involved in the system and do not consider the pathways into it. The purpose of this study is to examine predisposing factors that lead to various outcomes for individuals with intellectual disability when police are called to respond to their behavioural crises. Method The current study examined the outcome of police response to 138 individuals with intellectual disability in crisis. Following police intervention, 15 individuals were arrested, 76 were taken to the emergency department and 47 received on‐scene resolution. Comparisons between the three groups were conducted. Results The three groups differed in terms of residence at the time of crisis, history of forensic involvement and type of crisis. Police intervention with adults with intellectual disability can happen for different reasons. Both individual and situational predictors explained this outcome.
    August 08, 2013   doi: 10.1111/jar.12039   open full text
  • Prospective Dynamic Assessment of Risk of Sexual Reoffending in Individuals with an Intellectual Disability and a History of Sexual Offending Behaviour.
    Rachael E. Lofthouse, William R. Lindsay, Vasiliki Totsika, Richard P. Hastings, Douglas P. Boer, James L. Haaven.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background The purpose of the present study was to add to the literature on the predictive accuracy of a dynamic intellectual disability specific risk assessment tool. Method A dynamic risk assessment for sexual reoffending (ARMIDILO‐S), a static risk assessment for sexual offending (STATIC‐99), and a static risk assessment for violence (Violence Risk Appraisal Guide [VRAG]) were completed for a sample of 64 adult males with an intellectual disability. Results The dynamic risk assessment for sexual offenders with an intellectual disability resulted in the best prediction of sexual reoffending (ARMIDILO‐S area under the curve (AUC) = 0.92) this was better than an established sexual offending static risk assessment (STATIC‐99 AUC = 0.75). A static tool for violent reoffending, did not perform as well in this group (VRAG AUC = 0.58). Conclusions Results suggest that dynamic variables are useful in predicting sexual reoffending with individuals with an intellectual disability, confirming previous findings. The ARMIDILO‐S is a promising dynamic risk assessment for individuals with an intellectual disability.
    August 08, 2013   doi: 10.1111/jar.12029   open full text
  • Predicting Institutional Violence in Offenders with Intellectual Disabilities: The Predictive Efficacy of the VRAG and the HCR‐20.
    Suzanne Fitzgerald, Nicola S. Gray, Regi T. Alexander, Ruth Bagshaw, Paul Chesterman, Phillip Huckle, Susan K. Jones, John Taylor, Tegwyn Williams, Robert J. Snowden.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background There is a developing evidence base to support the use of risk assessment instruments in offenders with intellectual disability (ID). The aim of this study was to try to develop this literature with the inclusion of a control group of mentally disordered offenders without an ID, using the HCR‐20 and VRAG. Materials and Methods The VRAG and the HCR‐20 were completed for a group of offenders with an ID (n = 25) and a control group (n = 45), in four medium‐secure units across the UK. The outcome measure was physical aggression measured over 6 months. Results Both instruments consistently produced large effect sizes predicting any physical aggression and severe physical aggression. The structured clinical judgement based on the HCR‐20 was especially good. Conclusions The HCR‐20 and the VRAG have excellent predictive efficacy in offenders with an ID. A structured clinical judgement based on the HCR‐20 was especially predictive.
    August 08, 2013   doi: 10.1111/jar.12032   open full text
  • Offending by People with Intellectual Disabilities in Community Settings: A Preliminary Examination of Contextual Factors.
    Jessica R. Wheeler, Isabel C. H. Clare, Anthony J. Holland.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background While several validated measures of the life circumstances of people with intellectual disabilities (ID) have been developed, this stream of research has not yet been well integrated with environmentally oriented criminological theory to explain offending among people with ID. In this study, we attempt to provide a preliminary integration through an investigation of the relationship between contemporary life experiences, well‐being, choice and offending among people with ID, exploring the relevance of two classic criminological theories (theories of strain and social control). Materials and Methods Questionnaire measures were used to compare a range of ‘ordinary’ life experiences [the ‘Life Experiences Checklist’ (LEC)], subjective well‐being (the ‘Personal Well‐being Index – ID’) and the extent of choice (the ‘Choice Questionnaire’), between offenders (N = 27) and non‐offenders (N = 19) with ID recruited through integrated (NHS and Local Authority) multi‐disciplinary teams (community teams for adults with learning disabilities). Results Using regression analyses to explore the strength of associations with offending, it was found that an indicator of impoverished personal relationships, from the LEC provided the best predictor of offending. This finding appears to favour criminological explanations based on social control. Conclusions Existing measures of life circumstances can be used to explore environmentally oriented criminological theories, bringing benefits to our understanding and treatment of offenders with ID living in community settings.
    August 08, 2013   doi: 10.1111/jar.12040   open full text
  • Anti‐Social Behaviour and Police Contact among 13‐ to 15‐Year‐old English Adolescents with and Without Mild/Moderate Intellectual Disability.
    Eric Emerson, Sarah Halpin.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Objectives To describe the rates of anti‐social behaviour (ASB) among adolescents with/without mild/moderate intellectual disability (MMID). To estimate whether any differences could be attributable to differences in exposure to extraneous risk factors. Design Secondary analysis of the Longitudinal Study of Young People in England. Methods Participants with MMID were identified through data linkage with educational records. Results Parents of children with MMID were more likely to report police contact, children with MMID were more likely to self‐report fighting/public disturbance, shoplifting and graffiti. When controlling for differences in exposure to extraneous risk factors, MMID was associated with increased rates of police contact and self‐reported graffiti, no difference in self‐reported shoplifting, reduced rates of self‐reported fighting/public disturbance and vandalism. Conclusions Differences in the rates of exposure to extraneous risk factors play an important role in accounting for the differences in the prevalence of self‐reported ASB among adolescents with and without MMID.
    August 08, 2013   doi: 10.1111/jar.12041   open full text
  • Pre‐Trial Reported Defendants in the Netherlands with Intellectual Disability, Borderline and Normal Intellectual Functioning.
    David J. Vinkers.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background Intellectually disabled offenders may have different characteristics than offenders with average intellectual functioning. We therefore compared pre‐trial reported defendants with an IQ score ≤70, 71–84 and ≥85 points. Methods Nationwide database of pre‐trial psychiatric reports requested by Dutch courts between 2000 and 2006 with a reported level of intellectual functioning (n = 12 186). Results Defendants with an IQ score between 71 and 84 (n = 2 439 reports; 20.0%) and ≤70 (n = 539 reports; 4.4%) were younger, more often from an ethnic minority and more often diagnosed with psycho‐organic syndromes, developmental and conduct disorders as compared with defendants with an IQ score of 85 or higher. In addition, there was an increased risk of attention deficit hyperactivity disorder and rape as indicted crime and a decreased odds ratio of having a steady job and cannabis abuse in defendants with an IQ score of 71–84. Conclusion Intellectually disabled defendants have different characteristics than defendants without intellectually disability.
    August 08, 2013   doi: 10.1111/jar.12030   open full text
  • Why Do Some People with Intellectual Disability Engage in Offending Behaviour and What Can We Do About It? Editorial.
    William R. Lindsay, Richard P. Hastings, Nigel Beail.
    Journal of Applied Research in Intellectual Disabilities. August 08, 2013
    Background The field of forensic intellectual disabilities has been developing rapidly over the last 15 years. Much of the work has been built on research in mainstream criminality but more recently studies have emerged that reveal issues specific to offenders with intellectual disability. Method Research on pathways into offending is reviewed with reference to its relevance to the field of intellectual disability. We also summarize some findings on pathways into and through services for offenders with intellectual disability. Findings Studies reveal that developmental adversity is an important risk variable. Previous and recent aggression are potent risk factors. New evidence suggests that immediate, proximal risk factors may be more important in this client group. The studies in this issue add to the knowledge on pathways into offending, important areas for assessment and effective treatments as well as advancing knowledge in the academic literature on general criminality.
    August 08, 2013   doi: 10.1111/jar.12042   open full text
  • Health Disparities of Adults with Intellectual Disabilities: What Do We Know? What Do We Do?
    Gloria L. Krahn, Michael H. Fox.
    Journal of Applied Research in Intellectual Disabilities. July 31, 2013
    Background Recent attention to health of people with intellectual disabilities has used a health disparities framework. Building on historical context, the paper summarizes what is known about health disparities from reports and research and provide direction on what to do to reduce these disparities among adults with intellectual disabilities. Methods The present authors examined literature from 2002 to 2011 on health disparities and people with disabilities looking for broad themes on documenting disparities and on research approaches and methods. Results Multiple countries published reports on health of people with intellectual disabilities. Researchers summarized existing research within a health disparities framework. A number of promising methodologies are identified such as health services research, health indicators, enhanced surveillance and mixed‐methods. Conclusions Strategies to reduce health disparities include use of data to educate decision makers, attention to social determinants and a life‐course model and emphasis on leveraging inclusion in mainstream services where possible.
    July 31, 2013   doi: 10.1111/jar.12067   open full text
  • Writing About Stress: The Impact of a Stress‐Management Programme on Staff Accounts of Dealing with Stress.
    Wietske M. W. J. Oorsouw, Petri J. C. M. Embregts, Anna M. T. Bosman, Andrew Jahoda.
    Journal of Applied Research in Intellectual Disabilities. July 15, 2013
    Background Helping staff serving clients with intellectual disability and challenging behaviour to cope with stress has implications for their own well‐being and for the lives of those they support. Method This study examined staff members' views of stress and the effectiveness of a stress‐management intervention. Effectiveness was assessed using written assignments regarding stress management, and changes in views presented were tested in a pre‐ and post‐test control group design. Results In the first phase, a content analysis was conducted across groups, which revealed that participants expressed a broad variety of views about stress and coping mechanisms, with considerable individual differences. In the second phase, a more fine‐grained quantitative analysis was conducted to assess training effectiveness. Results showed an increase in the proportion of coping strategies referred to by the experimental group post‐training. This positive change remained at follow‐up. Conclusions The results of the content analysis and the outcome data have implications for staff training.
    July 15, 2013   doi: 10.1111/jar.12066   open full text
  • Mindfulness‐Based Stress Reduction for Parents of Young Children with Developmental Delays: Implications for Parental Mental Health and Child Behavior Problems.
    Cameron L. Neece.
    Journal of Applied Research in Intellectual Disabilities. July 01, 2013
    Background Parents of children with developmental delays (DD) typically report elevated levels of parental stress compared with parents of typically developing children. Children with DD are also at high risk for exhibiting significant behaviour problems. Parental stress has been shown to impact the development of these behaviour problems; however, it is rarely addressed in interventions aimed at reducing child behaviour problems. The current study examined the efficacy of mindfulness‐based stress reduction (MBSR) for parents of children with DD by investigating whether this intervention is effective in reducing parenting stress and whether decreases in parenting stress lead to reductions in behaviour problems among children with DD. Materials and methods Forty six parents of children with DD were randomly assigned to an immediate treatment or wait list‐control group. Participants completed questionnaires assessing parental stress and child behaviour problems at intake and at a second assessment, which took place after only the immediate treatment group had received the MBSR. Results Parents who participated in MBSR reported significantly less stress and depression as well as greater life satisfaction compared with wait list‐control parents. Regarding child outcomes, children whose parents participated in MBSR were reported to have fewer behaviour problems following the intervention, specifically in the areas of attention problems and ADHD symptomatology. Discussion Results indicated that MBSR may be an effective intervention for ameliorating parental stress and mental health problems among parents of children with DD. Additionally, these benefits may ‘spill over’ and improve behaviour challenges among these children.
    July 01, 2013   doi: 10.1111/jar.12064   open full text
  • Easy‐to‐read Texts for Students with Intellectual Disability: Linguistic Factors Affecting Comprehension.
    Inmaculada Fajardo, Vicenta Ávila, Antonio Ferrer, Gema Tavares, Marcos Gómez, Ana Hernández.
    Journal of Applied Research in Intellectual Disabilities. July 01, 2013
    Background The use of ‘easy‐to‐read’ materials for people with intellectual disabilities has become very widespread but their effectiveness has scarcely been evaluated. In this study, the framework provided by Kintsch's Construction–Integration Model (1988) is used to examine (i) the reading comprehension levels of different passages of the Spanish text that have been designed following easy‐to‐read guidelines and (ii) the relationships between reading comprehension (literal and inferential) and various linguistic features of these texts. Method Sixteen students with mild intellectual disability and low levels of reading skills were asked to read easy‐to‐read texts and then complete a reading comprehension test. The corpus of texts was composed of a set of forty‐eight pieces of news selected from www.noticiasfacil.es, a Spanish digital newspaper that publishes daily journalistic texts following international guidelines for the design of easy‐to‐read documents (IFLA, Tronbacke B. (1997) Guidelines for Easy‐to‐read Materials. IFLA, The Hague). Results Participants correctly answered 80% of the comprehension questions, showing significantly higher scores for literal questions than for inferential questions. The analyses of the texts' linguistic features revealed that the number of coreferences was the variable that best predicted literal comprehension, but contrary to what the previous literature seemed to indicate, the relationship between the two variables was inverse. In the case of inferential comprehension, the number of sentences was a significant negative predictor; that is, the higher the sentence density, the lower the ability of these students to find relationships between them. The effects of the rest of linguistic variables, such as word frequency and word length, on comprehension were null. Conclusions These results provide preliminary empirical support for the use of easy‐to‐read texts but bring into question the validity of some popular design guidelines (e.g. augmenting word frequency) to optimally match texts and reading levels of students with intellectual disability. Two factors are suggested as contributing to the effect of sentence density on inferential comprehension: (i) long texts present higher conceptual density, so there are more ideas to store, retrieve and integrate, which increases the demand on inferential reasoning and (ii) long texts are perceived as difficult, which affects reading motivation and, consequently, induces passive reading strategies. The need for further research to elucidate the origin of our main findings with a larger and more heterogeneous sample of students with intellectual disability is highlighted.
    July 01, 2013   doi: 10.1111/jar.12065   open full text
  • Vision Deficits in Adults with Down Syndrome.
    Sharon J. Krinsky‐McHale, Wayne Silverman, James Gordon, Darlynne A. Devenny, Nancy Oley, Israel Abramov.
    Journal of Applied Research in Intellectual Disabilities. June 19, 2013
    Background In individuals with Down syndrome, virtually all structures of the eye have some abnormality, which likely diminishes vision. We examined basic vision functions in adults with Down syndrome. Materials and Methods Participants completed a battery of psychophysical tests that probed a comprehensive array of visual functions. The performance of adults with Down syndrome was compared with younger and older adults without intellectual disability. Results Adults with Down syndrome had significant vision deficits, reduced sensitivity across spatial frequencies and temporal modulation rates, reduced stereopsis, impaired vernier acuity and anomalies in colour discrimination. The pattern of deficits observed was similar to those seen by researchers examining adults with Alzheimer's disease. Conclusions Our findings suggest that a common mechanism may be responsible for the pattern of deficits observed, possibly the presence of Alzheimer's disease neuropathology in the visual association cortex. We also showed that individuals with mild to moderate intellectual disability are capable of participating in studies employing state‐of‐the‐art psychophysical procedures. This has wider implications in terms of their ability to participate in research that use similar techniques.
    June 19, 2013   doi: 10.1111/jar.12062   open full text
  • Assisted Cycling Exercise Improves Fine Manual Dexterity in Persons with Down's syndrome.
    C‐C (JJ) Chen, S. D. R. Ringenbach, A. R. Albert.
    Journal of Applied Research in Intellectual Disabilities. June 18, 2013
    Background This study was aimed at investigating the impact of assisted cycling therapy (ACT) on fine manual dexterity in adults with Down's syndrome (DS). Methods Nine persons with DS completed four different interventions: voluntary exercise (VE), voluntary with music (VEM), assisted exercise (AE) and no exercise (NE). Fine manual dexterity (e.g., Purdue Pegboard) was tested pre and post interventions. Results The results showed dominant and bimanual hands were improved after AE but no evident in either subtest after VE. The assembly subtest, processed by spatial‐temporal ability, was only improved after VEM and NE. Conclusions It is speculated that AE stimulated more peripheral sensory input to the motor cortex and neurotransmitters than the other interventions. In addition, the involvement of music may enhance spatial intelligence during VEM. Even though the exact mechanisms are still unknown, the implication of our results showed that AE and VEM can improve fine manual dexterity in persons with DS.
    June 18, 2013   doi: 10.1111/jar.12061   open full text
  • The Stories of Older Parents of Adult Sons and Daughters with Autism: A Balancing Act.
    Monique Hines, Susan Balandin, Leanne Togher.
    Journal of Applied Research in Intellectual Disabilities. June 17, 2013
    Background Researchers acknowledge the importance of understanding how families of children with autism cope. Yet, little is known about the experiences of older parents of adults with autism. Materials and Methods In‐depth interviews were conducted with 16 older parents of adults with autism. Narrative analysis was used to gain insights into their lived experiences. Results Participants' narratives reflected the notion that much of their experience was a delicate balancing act as they attempted to manage their offspring's symptoms of autism whilst achieving a degree of fulfilment in their own lives. Parents did not believe that formal services had adequately supported their ability to provide care whilst meeting other needs within the family context. Conclusions The findings have implications for services that attempt to support older parents' abilities to provide care, including the need for tailored intervention strategies that match each family's unique needs.
    June 17, 2013   doi: 10.1111/jar.12063   open full text
  • Supporting People with Intellectual and Developmental Disabilities to Participate in their Communities through Support Staff Pilot Intervention.
    Andrea Gossett Zakrajsek, Joy Hammel, Joseph A. Scazzero.
    Journal of Applied Research in Intellectual Disabilities. June 03, 2013
    Background Increasingly, people with intellectual and developmental disabilities (I/DD) are supported to participate in least‐restricted settings in the community. However, little is known about desired community participation choice and control of people with I/DD, nor effective strategies to support full participation. Furthermore, service providers of this population in community and residential settings have unique roles in influencing choice and control in community participation. Research Aim The purpose of this project is to empower adults with I/DD in community participation by collaborating with agency staff and administrators to strategize change in service provision and programming. Methods This article describes the development, imple‐mentation and mixed‐methods evaluation of a pilot staff intervention. Results Findings indicate staff who participated in pilot intervention report increased confidence in supporting adults with I/DD to participate in their communities. Conclusions Intervention development has implications for staff, administrators and agencies in planning and executing opportunities to support choice and control for community participation for adults with I/DD.
    June 03, 2013   doi: 10.1111/jar.12060   open full text
  • Towards the Prevention of Behavioural and Psychiatric Disorders in People with Intellectual Disabilities.
    David Allen, Paul Langthorne, Bruce Tonge, Eric Emerson, Peter McGill, Robert Fletcher, Anton Dosen, Craig Kennedy.
    Journal of Applied Research in Intellectual Disabilities. May 27, 2013
    Intervention for behavioural and psychiatric disorders in people with intellectual disabilities often only takes place once these conditions are well established and more resistant to change. As an alternative, this paper promotes a public health prevention model and maps out opportunities for intervention at primary, secondary and tertiary levels. The resulting model is partly derived from generic research into these issues and partly on specific evidence on interventions for people with intellectual disabilities; it also contains more theoretical considerations. The additional research that is necessary to demonstrate the efficacy of the interventions identified is also considered. Central to this proposal is a greater integration of issues for people with intellectual disabilities within much broader policy and research agendas.
    May 27, 2013   doi: 10.1111/jar.12050   open full text
  • Staff Expectations and Views of Cognitive Behaviour Therapy (CBT) for Adults with Intellectual Disabilities.
    Biza Stenfert Kroese, Andrew Jahoda, Carol Pert, Peter Trower, Dave Dagnan, Mhairi Selkirk.
    Journal of Applied Research in Intellectual Disabilities. May 17, 2013
    Background The role of support workers and other professionals in the psychotherapeutic process has been commented upon but not as yet been systematically investigated. Method To explore their views and expectations of cognitive behaviour therapy (CBT) for adults with intellectual disabilities, eleven paid support workers and professionals were recruited and interviewed before the CBT sessions commenced for their service users and nine took part in the second interview that took place after nine sessions. Results Thematic Analysis of the interview transcripts indicates that staff members do not perceive CBT as a long‐term solution for psychological problems have little knowledge of CBT and do not feel included in the process. Nevertheless, after nine sessions, most participants reported improved psychological well‐being for their service users and expressed a wish for longer‐term involvement of the therapist. Conclusions The results suggest that for CBT to be effective in the longer term, the therapist is required to consider a wider systemic approach including staff training and supervision, staff and management consultancy and creating a delicate balance between confidentiality and sharing the psychological formulation with ‘significant others’ to ensure maintenance and generalisation of improved psychological well‐being.
    May 17, 2013   doi: 10.1111/jar.12059   open full text
  • I‐CAN: The Classification and Prediction of Support Needs.
    Samuel R. C. Arnold, Vivienne C. Riches, Roger J. Stancliffe.
    Journal of Applied Research in Intellectual Disabilities. May 13, 2013
    Background Since 1992, the diagnosis and classification of intellectual disability has been dependent upon three constructs: intelligence, adaptive behaviour and support needs (Luckasson et al. 1992. Mental Retardation: Definition, Classification and Systems of Support. American Association on Intellectual and Developmental Disability, Washington, DC). While the methods and instruments to measure intelligence and adaptive behaviour are well established and generally accepted, the measurement and classification of support needs is still in its infancy. This article explores the measurement and classification of support needs. Method A study is presented comparing scores on the ICF (WHO, 2001) based I‐CAN v4.2 support needs assessment and planning tool with expert clinical judgment using a proposed classification of support needs. A logical classification algorithm was developed and validated on a separate sample. Results Good internal consistency (range 0.73–0.91, N = 186) and criterion validity (κ = 0.94, n = 49) were found. Conclusions Further advances in our understanding and measurement of support needs could change the way we assess, describe and classify disability.
    May 13, 2013   doi: 10.1111/jar.12055   open full text
  • Adapted Physical Activity Programme and Self‐Perception in Obese Adolescents with Intellectual Disability: Between Morphological Awareness and Positive Illusory Bias.
    Laureline Salaun, Eric Reynes, Sophie E. Berthouze‐Aranda.
    Journal of Applied Research in Intellectual Disabilities. May 08, 2013
    Background In adolescent with intellectual disability, the management of obesity is a crucial issue, yet also quite complex because of their particular perception of themselves. This study investigated the relationship between self‐perception variables and morphological variables and their changes after a 9‐month Adapted Physical Activity (APA) programme. Materials and Methods Twenty‐three adolescents with intellectual disability responded to an adapted questionnaire, including the PSI‐VSF‐ID and a nine‐drawing body silhouette scale. Anthropometric and body composition indicators were measured before and after the APA programme. Results The main predictor of the adolescents' self‐perceptions was the inclination towards positive illusory bias before the intervention; obesity awareness ranked second. Morphological measurements did not contribute in the same way to self‐perceptions in the initial and final data. Conclusions This study confirms the interest of weight management programmes for adolescents with intellectual disability and points to the need to take positive illusory bias more fully into account in the study of self‐perception.
    May 08, 2013   doi: 10.1111/jar.12056   open full text
  • Prosocial Motivation, Stress and Burnout Among Direct Support Workers.
    Robert Hickey.
    Journal of Applied Research in Intellectual Disabilities. May 06, 2013
    Aim This study explores whether the desire to engage in work that is beneficial to others moderates the effects of stress on burnout. Method Based on a survey of 1570 direct support professionals in Ontario, this study conducted linear regression analyses and tested for the interaction effects of prosocial motivation on occupational stress and burnout. Results Prosocial motivation significantly moderated the association of emotional exhaustion (EE) and role boundary stress with depersonalization (DP). Prosocial motivation also moderated the effects of role ambiguity stress with a direct support worker's sense of personal accomplishment. In contrast, prosocial motivation magnified feelings of EE when interacted with a sense of personal accomplishment. Conclusions Prosocial motivation plays an important role in explaining the relatively low levels of DP in the sector. The study advances our understanding of the key components of burnout among direct support workers.
    May 06, 2013   doi: 10.1111/jar.12058   open full text
  • How Effective is the Cognitive Interview When Used with Adults with Intellectual Disabilities Specifically with Conversation Recall?
    Jason Clarke, Katherine Prescott, Rebecca Milne.
    Journal of Applied Research in Intellectual Disabilities. May 03, 2013
    Background The cognitive interview (CI) has been shown to increase correct memory recall of a diverse range of participant types, without an increase in the number of incorrect or confabulated details. However, it has rarely been examined for use with adults with intellectual disability. Measures and Method This study compared the memory recall of twenty‐one adults with a mild intellectual disability (ID) (IQ 70–50) and twenty‐one adults from the general population (GP). Participants viewed a film of a staged distraction theft and were interviewed using either the CI or the structured interview (SI). Results The CI, when compared to the SI, enhanced the correct recall of person, action and conversation (gist) detail for both participant types, without increasing the number of incorrect or confabulated details reported. The ID group reported significantly less correct information than the GP regardless of the interview used. Conclusion The findings suggest that the CI can enable adults with intellectual disability to provide a fuller picture about an experienced event. Implications of this research are discussed.
    May 03, 2013   doi: 10.1111/jar.12049   open full text
  • Effect of Exposure to Special Olympic Games on Attitudes of Volunteers towards Inclusion of People with Intellectual Disabilities.
    Chunxiao Li, Chee Keng John Wang.
    Journal of Applied Research in Intellectual Disabilities. May 03, 2013
    Background The aim of this study was to examine the effect of volunteering for Special Olympics Games (SOG) on the attitudes of volunteers towards inclusion of people with intellectual disabilities. Method A repeated measures design with 3‐week follow‐up was used. There were 100 volunteers recruited for the study and 90 of them completed the study. Results It was revealed that a 1‐week exposure to the SOG improved volunteers’ attitudes towards inclusion of people with intellectual disabilities significantly (P = 0.016). Females had more positive attitudes than males at all three time points of measures. The interaction effect of gender was not significant. Conclusions A 1‐week exposure to the SOG can enhance volunteers’ positive attitudes towards inclusion of people with intellectual disabilities and this effect can maintain for up to a month.
    May 03, 2013   doi: 10.1111/jar.12053   open full text
  • Friendship Quality in Adolescents with and without an Intellectual Disability.
    Leigh A. Tipton, Lisa Christensen, Jan Blacher.
    Journal of Applied Research in Intellectual Disabilities. April 26, 2013
    Background High friendship quality is often defined by high levels of intimacy, companionship, closeness and low levels of conflict. Quality friendships develop over time and may be influenced by both behaviour problems and social skills. Materials and methods Participants were 103, 13‐year‐old adolescents with or without intellectual disabilities in the United States. Adolescents and their mothers participated in an open‐ended interview of friendship quality and completed measures of social skills and behaviour problems. This study addressed differences in friendship quality between children with and without intellectual disabilities and explored early indicators of friendship development. Results Adolescents with intellectual disabilities (ID) had friendships characterized by significantly lower levels of warmth/closeness and positive reciprocity than their typically developing peers. Likewise, adolescents with ID spent less time with friends outside of school and were less likely to have a cohesive group of friends. Social skills and behaviour problems at age 9 predicted friendship quality at age 13 above and beyond disability status, with higher levels of social skills and lower levels of behaviour problems related to higher ratings on measures of friendship quality. Conclusions It appears that adolescents with intellectual disabilities have friendships that are characterized by less warmth/closeness and less positive reciprocity than the friendships of their typically developing peers. This discrepancy appears to be impacted by early social skills and behaviour problems in addition to the presence of the intellectual disability.
    April 26, 2013   doi: 10.1111/jar.12051   open full text
  • Relationships between Leisure Participation and Quality of Life of People with Developmental Disabilities.
    Marta Badia, María Begoña Orgaz, Miguel Á. Verdugo, Ana M. Ullán, Magdalena Martínez.
    Journal of Applied Research in Intellectual Disabilities. April 24, 2013
    Background Studies of people with developmental disabilities suggest that participation in leisure activities might be a key factor for good quality of life. This study explores the relationships between objective and subjective quality of life and leisure participation of adults with developmental disabilities. Materials and Methods A cross‐sectional design was used with a convenience sample of 125 people, aged 17–65, living in the community. Participants completed the subjective scale of Integral Quality Scale and the Leisure Assessment Inventory in the form of an individual interview. Staff completed the GENCAT Scale. Results No relationship was found between objective quality of life and leisure participation. However, correlations between some leisure participation dimensions and specific subjective quality of life domains were observed. The results establish a predictive relationship between leisure participation and material, emotional, and physical well‐being. Personal and environmental variables analyzed were not found to have a moderating effect on the relationship between leisure participation and quality of life. Conclusions These findings indicate that some aspects of leisure participation may significantly contribute to enhancing the quality of life of young people and adults with developmental disabilities living in the community.
    April 24, 2013   doi: 10.1111/jar.12052   open full text
  • Exploring Patterns of Unwanted Behaviours in Adults with Prader–Willi Syndrome.
    Riccardo Pignatti, Ileana Mori, Laura Bertella, Graziano Grugni, Daniela Giardino, Enrico Molinari.
    Journal of Applied Research in Intellectual Disabilities. April 24, 2013
    Background Obsessive‐compulsive (O‐C) traits, and excessive food intake are well known behavioural manifestations among individuals with Prader–Willi Syndrome (PWS). Other unwanted behaviours are also frequently observed, but they need a more specific investigation, especially in the adult population. Methods The behaviour of 31 PWS adults was investigated via the Symptom Checklist‐90‐Revised (SCL‐90‐R), the Yale‐Brown Obsessive Compulsive Scale Symptom Checklist (Y‐BOCS‐SC), and the Prader–Willi Behavioural Checklist (PBC). The PBC is a quick screening questionnaire prompted specifically for the investigation on adults with PWS. Results Statistical clustering revealed two patterns of unwanted behaviours from the PBC. Behaviours belonging to the first cluster (e.g. Excessive food intake, Skin picking) appear to be linked to the usual phenotypic manifestation of PWS. By contrast, many other behaviours (e.g. some O‐C symptoms and aggressive actions) could show a relationship also to individual psychopathologies. Conclusions Both internal (Anxiety and Depression) and external (Hostility) difficulties in managing impulses should account for individually distinct behaviours in adults with PWS.
    April 24, 2013   doi: 10.1111/jar.12047   open full text
  • High Prevalence of Hearing Loss at the Special Olympics: Is This Representative of People with Intellectual Disability?
    C. Hey, S. Fessler, N. Hafner, B. P. Lange, H. A. Euler, K. Neumann.
    Journal of Applied Research in Intellectual Disabilities. April 23, 2013
    Background The Healthy Hearing (HH) programme at the Special Olympics (SO) revealed hearing disorders in between 16 and 40% of athletes. However, it is not clear whether these prevalence represents the entire population with intellectual disability. Therefore, this study compares the hearing status of SO athletes with an intellectual disability (ID) to students with ID at a special needs school. Materials and Methods The HH screening was performed in 637 athletes (mean age 27.1 years, range 9.7–70.6 years) during the 2008 German SO Summer Games – and in 198 special needs students (mean age 12.7 years, range 6.7–20.0 years). Results Twenty‐two per cent of athletes and 18% of students failed the HH screening. Approximately 60% of the total participants received recommendations for further follow‐up and treatment without between‐group differences. Conclusions The results of the HH screening at SO events are assumed to be representative of children and adolescents with ID in special needs schools.
    April 23, 2013   doi: 10.1111/jar.12057   open full text
  • Validity and Reliability of the Korean Version of the Behaviour Problems Inventory.
    Byounglock Jeong, Eunyoung Yoo, Minye Jung, Daehyuk Kang, Soyeon Park, Soo Hyun Park.
    Journal of Applied Research in Intellectual Disabilities. April 22, 2013
    Background The aim of this study was to establish the psychometric properties of the Korean Behaviour Problems Inventory (BPI‐01). Methods Fifty‐five allied professionals completed a content validity questionnaire about the Korean BPI‐01. To examine reliability, 52 individuals with intellectual disabilities residing in a medium‐sized residential home were evaluated by two occupational therapists trained in the administration of the Korean BPI‐01 through interviews with caregivers who had known the residents at least 6 months. Results Allied professionals’ responses supported the content validity of the Korean BPI‐01. The results of intraclass correlation coefficients and Cronbach's α indicate that the Korean BPI‐01 is a reliable instrument. Conclusions The results of the present study indicate that the Korean BPI‐01 holds adequate content validity and reliability for measuring behavioural problems in individuals with intellectual disabilities in Korean clinical settings.
    April 22, 2013   doi: 10.1111/jar.12054   open full text
  • Use and Acceptance of AAC Systems by Children with Angelman Syndrome.
    Stephen N. Calculator.
    Journal of Applied Research in Intellectual Disabilities. April 21, 2013
    Background This investigation of children with Angelman syndrome (AS) examined reported uses of electronic augmentative and alternative communication (AAC) devices (i.e. VOCAs), including speech generating devices, in relation to other aided and unaided methods of communication. Materials and Method A total of 122 parents of children with AS, mostly from the USA self‐administered a survey over the Internet. Qualitative methods based primarily on thematic analysis were used to organize and examine data. Results Children relied heavily on unaided methods of communication such as natural gestures, regardless of their experiences with electronic communication devices. Parents cited various reasons for children's acceptance or rejection of their most advanced devices. Discussion Clinical implications are discussed in relation to children's needs for multimodal methods of communication, including accurately matching children's capabilities to AAC device characteristics. Practitioners are encouraged to consider reasons that parents cited for children's acceptance versus rejection of devices when implementing AAC programs.
    April 21, 2013   doi: 10.1111/jar.12048   open full text