Most recent papers:

• Boys with fragile X syndrome: investigating temperament in early childhood.
  C. M. Low Kapalu, M. A. Gartstein.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 19, 2016
  Background Fragile X syndrome (FXS) is an x‐linked genetic disorder that represents the most common hereditary cause of Intellectual Disability (ID). Very specific behavioural features (e.g. attention deficit hyperactivity disorder and stereotyped behaviour) are associated with FXS in adolescents and adults, yet research on temperament and behavioural characteristics in young children with FXS has been more limited and less conclusive. Method This study investigated temperament differences in young boys (3–7 years old) with FXS (N = 26) recruited from a national FXS centre and controls (N = 26) matched on age, gender and race. Results Compared with controls, boys with FXS exhibited less overall surgency/extraversion and effortful control. Boys with FXS also displayed significantly greater activity and shyness and less attentional focusing, inhibitory control, soothability and high intensity pleasure (tendency to enjoy intense/complex activities), relative to comparison children. A significant interaction between age and diagnosis (FXS or control) was observed for negative affectivity only. Conclusions Attention difficulties commonly found in adolescents and adults with FXS appear to also be characteristic of young boys with FXS, as reflected by lower effortful control. Age‐related findings concerning negative affectivity may be particularly significant, leading to improved intervention/preventative efforts.

  June 19, 2016   doi: 10.1111/jir.12304   open full text
• Economic burden and health‐related quality of life associated with Prader–Willi syndrome in France.
  K. Chevreul, K. Berg Brigham, M.‐C. Clément, C. Poitou, M. Tauber,.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. May 13, 2016
  Background To date, there has been no published comprehensive estimation of costs related to Prader–Willi syndrome (PWS). Our objective was therefore to provide data on the economic burden and health‐related quality of life associated with PWS in France in order to raise awareness of the repercussions on individuals suffering from this syndrome and on caregivers as well as on the health and social care systems. Method A retrospective cross‐sectional study was carried out on 51 individuals recruited through the French PWS patient association. Data on their demographic characteristics and resource use were obtained from an online questionnaire, and costs were estimated by a bottom‐up approach. The EQ‐5D‐5L health questionnaire was used to measure the health‐related quality of life of individuals suffering from PWS and their caregivers. Results The average annual cost of PWS was estimated at €58 890 per individual, with direct healthcare accounting for €42 299, direct non‐healthcare formal costs €13 865 and direct non‐healthcare informal costs €8459. The main contributors to PWS costs were hospitalisations and social services. Indirect costs resulting from loss of productivity in the labour market was €32 542 for adults suffering from PWS. Mean EQ‐5D utility scores were 0.4 for individuals with PWS and 0.7 for caregivers. Conclusions Prader–Willi syndrome represents a major economic burden from a societal perspective and has a significant impact on health‐related quality of life both for individuals suffering from PWS and for their caregivers in France. These results underscore the need to develop tailored policies targeted at improving care. Likewise, a larger study collecting a broader range of medical characteristics should be undertaken to achieve more precise estimations.

  May 13, 2016   doi: 10.1111/jir.12288   open full text
• Delay of gratification: a comparison study of children with Down syndrome, moderate intellectual disability and typical development.
  M. Cuskelly, L. Gilmore, S. Glenn, A. Jobling.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 04, 2016
  Background Self‐regulation has been found to be an important contributor to a range of outcomes, with delay of gratification (a self‐regulatory skill) predicting better academic, social and personal functioning. There is some evidence that individuals with Down syndrome have difficulty with delay of gratification. We investigated the question of whether this difficulty is common to intellectual disability irrespective of aetiology, or whether it presents a particular problem for those with Down syndrome. The latter was considered a possibility because of language difficulties in this group. Method Three groups of children with a mean MA between 36 and 60 months participated in the study: children with Down syndrome (n = 32), children with a moderate intellectual disability from a cause other than Down syndrome (n = 26) and typically developing children (n = 50). Children completed a series of measures of language and cognitive functioning and participated in a delay of gratification task. Results The group of children with Down syndrome delayed for a significantly shorter time than either of the other two groups that did not differ from each other. Receptive language was associated with delay time for the children with Down syndrome but not for the typically developing group, nor for the group with moderate intellectual disability. Conclusions Children with Down syndrome appear to have a particular difficulty with delay of gratification. Language abilities would seem to be implicated in this difficulty, although further examination of this hypothesis is required.

  March 04, 2016   doi: 10.1111/jir.12262   open full text
• Understanding the causes of obesity in children with trisomy 21: hyperphagia vs physical inactivity.
  T. Foerste, M. Sabin, S. Reid, D. Reddihough.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 03, 2016
  Background Individuals with intellectual disabilities are at increased risk of becoming overweight or obese. This is particularly evident in people with trisomy 21 and Prader–Willi syndrome (PWS). Although metabolic factors are known to contribute to obesity in trisomy 21 and hyperphagia plays a primary role in PWS, hyperphagia has not yet been investigated as a possible contributing factor to obesity in trisomy 21. Methods Participants comprised three diagnostic groups: trisomy 21 (T21 group), PWS (PWS group) and lifestyle‐related obesity (LRO group). They were required to be aged 6–18 years and have a body mass index over the 85th percentile for age and gender. A parent of each participant completed the Hyperphagia Questionnaire and the Children's Leisure Activity Study Survey. Mean scores for each domain and across all domains of the Hyperphagia Questionnaire and the Children's Leisure Activity Study Survey were compared between diagnostic groups using linear regression analysis. Results The study group consisted of 52 young people (23 men and 29 women) aged 6–18 years (mean 12.5 years; T21 group n = 17, PWS group n = 16 and LRO group n = 19). As hypothesised, the PWS group had the highest mean scores across all domains of the Hyperphagia Questionnaire, and the LRO group had the lowest. Food‐seeking behaviour was more pronounced in the PWS group than the T21 group (mean score 13.2 vs. 8.6, p = 0.008). The LRO group spent more hours per week engaged in physical activity (14.7) in comparison with the other groups (9.6 and 9.7), whereas between the groups, differences in time spent in sedentary activities were less pronounced. Conclusions Preoccupation with food and low levels of physical activity may contribute to the development of overweight and obesity in some individuals with trisomy 21. These factors warrant consideration in the clinical context.

  March 03, 2016   doi: 10.1111/jir.12259   open full text
• Validity of a condition specific outcome measure for fragile X syndrome: the Aberrant Behaviour Checklist‐utility index.
  M. Raspa, P. Sacco, S.D. Candrilli, E. Bishop, J. Petrillo.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 01, 2016
  Background The purpose of this study was to assess the construct validity of the Aberrant Behaviour Checklist‐utility index (ABC‐UI) by examining the relationship between healthcare resource utilisation by patients with fragile X syndrome (FXS) as well as burden experienced by their caregivers. Method In 2011, a total of 350 US caregivers of individuals with FXS completed a questionnaire that captured information on FXS‐related burden as well as the ABC‐Community. Using the ABC‐UI, a condition‐specific outcome measure derived from the ABC‐Community, five utility index categories were created: very low (0.00–0.33); low (0.34–0.66); moderate (0.67–0.77); high (0.78–0.89); and very high (0.90–1.00). Multivariable regression models examined the association between the utility value and nine burden‐related outcomes. Results Approximately 2% of individuals with FXS were in the very low utility index category, 31% low, 27% moderate, 38% high and 3% very high. The median utility value was 0.74. Women with FXS and adults 18 years and older had higher values. Regression results indicate that individuals with higher utility values were more likely to have fewer specialist visits, use fewer prescription medications, need fewer hours of unpaid caregiving, inflict fewer caregiver injuries and have caregivers with fewer mental health provider visits. Conclusions The ABC‐UI appears to function well as condition‐specific outcome measure, and as an indicator of health‐related quality‐of‐life and economic burden in individuals with FXS. Among patients with FXS in the US and their caregivers, significant differences in health care resource utilisation and burden exist across health state utility categories.

  March 01, 2016   doi: 10.1111/jir.12264   open full text
• ‘To move or not to move’: a national survey among professionals on beliefs and considerations about the place of end‐of‐life care for people with intellectual disabilities.
  N. Bekkema, A. J. E. Veer, A. M. A Wagemans, C. M. P. M. Hertogh, A. L. Francke.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. May 27, 2014
  Background The aim of this article was to investigate the beliefs and considerations of professionals concerning an appropriate environment for end‐of‐life care for people with intellectual disabilities (ID). Method A survey questionnaire was composed based on a scan of relevant literature and the results of group interviews with professionals, family members and people with ID. The questionnaire focused on the respondents' general beliefs about an appropriate environment for end‐of‐life care and their specific considerations regarding the place of care of the last client for whom the respondent provided end‐of‐life care. The questionnaire was sent to 294 care staff members recruited from a nationally representative panel of nurses and social workers, 273 ID physicians recruited from the members list of the Dutch professional association of ID physicians, and 1000 general practitioners (GPs) recruited from a nationally representative sample from a national registration of GPs. Results The overall response was 46%. Professionals predominantly believe that all efforts should be made to ensure that a person with ID receives end‐of‐life care in their own home environment, and that 24/7 care is available. Respondents indicated that most of the clients (79%) who had last received end‐of‐life care from an ID care service were able to stay in their own home environment. Decisions to keep the client in their own home environment were primarily based on the familiarity of the environment and the expertise of the team in end‐of‐life care. Insufficient expertise and a lack of adequate equipment were the main considerations in decisions to move a client. Despite the belief of care staff in particular that the wishes of the person with ID should always be leading when deciding on the place of end‐of‐life care, only 8% of the care staff and ID physicians explicitly mentioned that the client's wishes were taken into account in actual decision‐making. Conclusions Professionals agree that end‐of‐life care for people with ID should preferably take place in the client's home environment, even when nursing expertise, experience and adequate equipment are not (yet) in place. Nonetheless, a lack of expertise in end‐of‐life care is the foremost consideration in decisions to move a client. If ID care services want to promote end‐of‐life care in the client's own home, we recommend formulating a policy on how to realise end‐of‐life care in the client's own home environment and provide sufficient training and support for staff. To involve people with ID as much as possible, we recommend that professionals integrate more collaborative principles in decision‐making about the place of end‐of‐life care.

  May 27, 2014   doi: 10.1111/jir.12130   open full text
• Predicting reading comprehension academic achievement in late adolescents with velo‐cardio‐facial (22q11.2 deletion) syndrome (VCFS): a longitudinal study.
  K. Antshel, B. Hier, W. Fremont, S. V. Faraone, W. Kates.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. May 26, 2014
  Background  The primary objective of the current study was to examine the childhood predictors of adolescent reading comprehension in velo‐cardio‐facial syndrome (VCFS). Although much research has focused on mathematics skills among individuals with VCFS, no studies have examined predictors of reading comprehension. Methods  69 late adolescents with VCFS, 23 siblings of youth with VCFS and 30 community controls participated in a longitudinal research project and had repeat neuropsychological test batteries and psychiatric evaluations every 3 years. The Wechsler Individual Achievement Test – 2nd edition (WIAT‐II) Reading Comprehension subtest served as our primary outcome variable. Results  Consistent with previous research, children and adolescents with VCFS had mean reading comprehension scores on the WIAT‐II, that were approximately two standard deviations below the mean and word reading scores approximately one standard deviation below the mean. A more novel finding is that relative to both control groups, individuals with VCFS demonstrated a longitudinal decline in reading comprehension abilities yet a slight increase in word reading abilities. In the combined control sample, WISC‐III FSIQ, WIAT‐II Word Reading, WISC‐III Vocabulary and CVLT‐C List A Trial 1 accounted for 75% of the variance in Time 3 WIAT‐II Reading Comprehension scores. In the VCFS sample, WISC‐III FSIQ, BASC‐Teacher Aggression, CVLT‐C Intrusions, Tower of London, Visual Span Backwards, WCST Non‐perseverative Errors, WIAT‐II Word Reading and WISC‐III Freedom from Distractibility index accounted for 85% of the variance in Time 3 WIAT‐II Reading Comprehension scores. A principal component analysis with promax rotation computed on the statistically significant Time 1 predictor variables in the VCFS sample resulted in three factors: Word reading decoding/Interference control, Self‐Control/Self‐Monitoring and Working Memory. Conclusions  Childhood predictors of late adolescent reading comprehension in VCFS differ in some meaningful ways from predictors in the non‐VCFS population. These results offer some guidance for how best to consider intervention efforts to improve reading comprehension in the VCFS population.

  May 26, 2014   doi: 10.1111/jir.12134   open full text
• Initiation of activities and alertness in individuals with profound intellectual and multiple disabilities.
  V. Munde, C. Vlaskamp.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. May 08, 2014
  Background When providing activities to individuals with profound intellectual and multiple disabilities (PIMD), direct support persons (DSPs) often face questions that are, among other things, related to the alertness of the person with PIMD. While previous studies have revealed that stimulation might have a greater impact on levels of alertness than the internal conditions of the individual, they have also emphasized the importance of interaction in order to influence the level of alertness. Because the initiation of this interaction has been described as one of its core components, the present study has focused on the relationship between the stimuli presented, the initiation of the activity (by the person with PIMD or the DSP), and the level of alertness of the person with PIMD. Method Videotapes of the one‐to‐one interactions of 24 individuals with PIMD and their DSPs in multisensory environments have been scored using the Alertness Observation List. In a sequential analysis, the percentages of stimuli presented were related to the percentages of initiation. Furthermore, two other analyses focused on the relationship between the level of alertness and the preceding and subsequent percentages of initiation respectively. Results The results show that high percentages of the activities are initiated by the DSPs. In addition, activities that were initiated by the individual with PIMD were preceded and followed by higher percentages of alert behaviour than those initiated by the DSP. Outcomes differed for the different types of stimuli. Conclusions These results have striking implications for the lives of individuals with PIMD. It is quite possible that DSPs often act too quickly, whereas they would be better off waiting for a reaction on the part of their client. In general, DSPs need to find a balance between being passive themselves and promoting in the individual with PIMD a state of being as active and alert as possible.

  May 08, 2014   doi: 10.1111/jir.12138   open full text
• Clumsiness in fine motor tasks: evidence from the quantitative drawing evaluation of children with Down Syndrome.
  S. L. Vimercati, M. Galli, G. Stella, G. Caiazzo, A. Ancillao, G. Albertini.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 28, 2014
  Introduction Drawing tests are commonly used for the clinical evaluation of cognitive capabilities in children with learning disabilities. We analysed quantitatively the drawings of children with Down Syndrome (DS) and of healthy, mental age‐matched controls to characterise the features of fine motor skills in DS during a drawing task, with particular attention to clumsiness, a well‐known feature of DS gross movements. Methods Twenty‐three children with DS and 13 controls hand‐copied the figures of a circle, a cross and a square on a sheet. An optoelectronic system allowed the acquisition of the three‐dimensional track of the drawing. The participants' posture and upper limb movements were analysed as well. Results Results showed that the participants with DS tended to draw faster but with less accuracy than controls. Discussion While clumsiness in gross movements manifests mainly as slow, less efficient movements, it manifests as high velocity and inaccurate movements in fine motor tasks such as drawing.

  April 28, 2014   doi: 10.1111/jir.12132   open full text
• Drug administration via enteral feeding tubes in residential care facilities for individuals with intellectual disability: an observational study.
  E. Joos, E. Mehuys, J. Van Bocxlaer, J. P. Remon, M. Van Winckel, K. Boussery.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 25, 2014
  Background The administration of oral medication to patients with an enteral feeding tube (EFT) is challenging. Compliance to guidelines concerning medication administration via EFT has been investigated extensively in the hospital setting. However, studies in residential care facilities (RCFs) for individuals with intellectual disability (ID) are very limited. Therefore, the present study aimed to collect direct observational data on drug administration practices to residents with EFT in multiple RCFs. Method This cross‐sectional, observational study was conducted in six Belgian RCFs for individuals with ID. Observations of medication preparation and administration through EFT were carried out in two randomly selected units per participating RCF, on 2 days per unit during all daytime drug rounds, using a direct observation method. Afterwards, the recorded observations were compared with international guidelines on drug preparation and administration through EFT. Results In total, 862 drug preparations and 268 administrations in 48 residents with EFT were witnessed. Mixing together multiple drugs, not diluting liquid formulations with at least an equal amount of water, not shaking suspensions/emulsions before use, and not selecting the most appropriate dosage form were the most common deviations from medication preparation guideline recommendations. For medication administration, not flushing the EFT with at least 15 mL water was the most common deviation. We also observed high variability in working methods regarding medication preparation and administration via EFT, even between staff members of the same unit. Conclusion This study found that current guidelines concerning medication preparation and administration through EFT are often not followed in Belgian RCFs for individuals with ID. Further research aimed at understanding why current guidelines are not followed seems warranted.

  April 25, 2014   doi: 10.1111/jir.12129   open full text
• Knowledge exchange and integrated services: experiences from an integrated community intellectual (learning) disability service for adults.
  C. Farrington, I. C. H. Clare, A. J. Holland, M. Barrett, E. Oborn.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 25, 2014
  Background This paper examines knowledge exchange dynamics in a specialist integrated intellectual (learning) disability service, comprising specialist healthcare provision with social care commissioning and management, and considers their significance in terms of integrated service delivery. Methods A qualitative study focusing on knowledge exchange and integrated services. Semi‐structured interviews (n = 25) were conducted with members of an integrated intellectual disability service in England regarding their perceptions of knowledge exchange within the service and the way in which knowledge exchange impinges on the operation of the integrated service. Results Exchange of ‘explicit’ (codifiable) knowledge between health and care management components of the service is problematic because of a lack of integrated clinical governance and related factors such as IT and care record systems and office arrangements. Team meetings and workplace interactions allowed for informal exchange of explicit and ‘tacit’ (non‐codifiable) knowledge, but presented challenges in terms of knowledge exchange completeness and sustainability. Conclusions Knowledge exchange processes play an important role in the functioning of integrated services incorporating health and care management components. Managers need to ensure that knowledge exchange processes facilitate both explicit and tacit knowledge exchange and do not rely excessively on informal, ‘ad hoc’ interactions. Research on integrated services should take account of micro‐scale knowledge exchange dynamics and relationships between social dynamics and physical factors.

  April 25, 2014   doi: 10.1111/jir.12131   open full text
• Adverse health in parents of children with disabilities and chronic health conditions: a meta‐analysis using the Parenting Stress Index's Health Sub‐domain.
  N. Miodrag, M. Burke, E. Tanner‐Smith, R. M. Hodapp.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 24, 2014
  Background Compared with parents of same‐aged children without disabilities, parents of children with disabilities and with chronic health conditions (CHC) show higher levels of stress and depression. Fewer studies, however, examine the physical health of these parents, and studies report mixed findings. Many studies, however, report mother's self‐reported health using the Health Sub‐domain of Abidin's Parenting Stress Index (PSI). We therefore conducted a meta‐analysis comparing the physical health of parents of children with developmental disabilities (DD) and CHC vs. parents of children without DD/CHC in studies utilising this measure. Methods Eligible studies used the long form of the PSI and reported results from the 5‐item Health sub‐domain. Group comparison effect sizes were synthesised in a meta‐analysis, and we also examined the potential relations of child, parent, and study characteristics. Our search yielded 19 eligible studies. Results Compared with parents of children without DD/CHC, parents of children with DD/CHC reported higher PSI health problem scores, with a weighted mean effect size of 0.39 (95% CI = 0.23–0.55). Effect sizes ranged from −0.13 to 1.46 and there was evidence of heterogeneity in the effect sizes (τ2 = 0.07; Q18 = 48.64, P < 0.01; I2 = 63.0%). Studies with higher numbers of reporting quality indicators generally reported larger effects and more recent studies showed smaller effects. Although several child and parent characteristics were moderately associated with effect sizes, none reached statistical significance. Conclusions Practitioners should be alerted to the need for health prevention and treatment in this at‐risk parent group.

  April 24, 2014   doi: 10.1111/jir.12135   open full text
• Does type of disability make a difference in affiliate stigma among family caregivers of individuals with autism, intellectual disability or physical disability?
  S. Werner, C. Shulman.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 24, 2014
  Background Studies have shown that beyond public and self stigma, stigma can also impact family members. Only scant research has examined the internalised aspects of stigma, known as affiliate stigma, among family caregivers of individuals with disabilities. This study examined affiliate stigma among family caregivers of individuals with developmental disabilities via a comparison between caregivers of individuals with intellectual disabilities (ID), autism spectrum disorders (ASD) and physical disabilities (PD) in Israel. Methods Family caregivers (n = 171) of individuals with developmental disabilities, mainly ID (22.4%), ASD (32.9%) and PD (27.1%), completed a self‐report structured questionnaire including the Affiliate Stigma Scale and background variables. Results Results supported a one‐factor structure for the Affiliate Stigma Scale. Overall, affiliate stigma was relatively low in this sample, but was found to be higher among caregivers of individuals with ASD when compared with caregivers of individuals with ID or PD. Conclusion Findings from this study point to the importance of supporting caregivers of individuals with ASD to decrease their feelings of stigma. It is also important to further develop scales measuring affiliate stigma in order to capture the multi‐dimensional nature of the concept.

  April 24, 2014   doi: 10.1111/jir.12136   open full text
• Improving health behaviours of Latina mothers of youths and adults with intellectual and developmental disabilities.
  S. Magaña, H. Li, E. Miranda, R. Paradiso de Sayu.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 24, 2014
  Background Latina mothers who care for children with intellectual and developmental disabilities (IDD) over the lifespan struggle to take care of their own health needs in the context of their caregiving experience. Services are typically aimed at the persons with IDD and not their family caregivers. Yet, attending to family caregiver needs may contribute to better long‐term care of persons with IDD who remain at home. To address this unmet need, we developed a culturally sensitive health education intervention for Latina mothers who care for youth and adults with IDD. The aim of the intervention is to improve maternal health‐related self‐efficacy and health behaviours, and to reduce stress. Method A randomised control design was employed to determine preliminary efficacy of the intervention. Paired sample t‐tests were conducted to examine within‐group changes from baseline to 3‐month post‐test. Repeated‐measures analysis of covariance was used to examine the group‐by‐time interaction effects. Results Intervention participants showed greater increases between pre‐ and post‐test in health‐related self‐efficacy; self‐care, nutrition and overall health behaviours. Both groups reported decreases in depressive symptoms and caregiver burden. Conclusions While additional research is needed to determine long‐term effects and to replicate findings, our results suggest that this culturally sensitive health intervention is a promising way to increase health behaviours which may lead to overall good health for Latina mothers who care for children with IDD across the lifespan.

  April 24, 2014   doi: 10.1111/jir.12139   open full text
• Predictors of sense of coherence in typically developing adolescent siblings of individuals with autism spectrum disorder.
  L. O. Smith, J. H. Elder, E. A. Storch, M. A. Rowe.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 20, 2014
  Background Children with autism spectrum disorder (ASD) may be a stressor for family members yet there is little published research on the impact of having a child with ASD on their typically developing (TD) adolescent siblings. According to Antonovsky's salutogenic model, a strong sense of coherence leads to the view that the stressor is a manageable challenge rather than a burden and promotes healthier adaptation. This study examines the relationship between stress, TD sibling resources and the sense of coherence in TD siblings. Method This quantitative mail‐based study uses a survey methodology, analysing the responses of TD adolescent siblings (n = 96) of individuals with autism, Asperger's syndrome, or pervasive developmental disorder – not otherwise specified to several rating scales. Adolescent siblings, ages 11 to 18 years, completed the Adolescent Coping Orientation for Problem Experience (ACOPE), Network of Relationship Inventory – Social Provision Version (NRI‐SPV), Youth Self Report (YSR), and Sense of Coherence (SOC) instruments; parents completed the Child Autism Rating Scale – 2nd Edition (CARS‐2). Results The salutogenesis model was used to guide and inform this research. Findings suggested the following: (a) the stress of ASD severity and resource of adjustment are related in TD adolescent siblings; (b) TD sibling adjustment has a strong relationship with sense of coherence levels; and (c) a greater number of positive coping strategies buffer TD sibling coherence levels when ASD severity scores are high. Conclusions ASD severity and TD adolescent sibling resources influence sense of coherence in adolescent TD siblings of individuals with ASD.

  March 20, 2014   doi: 10.1111/jir.12124   open full text
• Risk factors associated with the mental health of fathers of children with an intellectual disability in Australia.
  R. Giallo, M. Seymour, J. Matthews, S. Gavidia‐Payne, A. Hudson, C. Cameron.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 20, 2014
  Background Raising a child with a disability places considerable demands and stress on parents, which can contribute to mental health difficulties. Research has primarily focused on mothers' mental health, and our understanding of the effects on fathers remains limited. The factors that place fathers at increased risk of mental health difficulties are also poorly understood. This study aimed to redress these gaps by reporting on the mental health of a large sample of fathers of children with an intellectual disability (ID) (aged 3–15 years), comparing this to published Australian norms and mothers of children with ID. The second aim of the study was to explore risk factors associated with fathers' mental health. Method The data for this study come from 315 Australian fathers of children (aged 3–15 years) with ID, who participated in the large‐scale evaluation of the Signposts for building better behaviour programme. Fathers completed a range of self‐report questionnaires at baseline including the Depression Anxiety Stress Scale (DASS). Results Fathers in the present sample reported significantly more symptoms of depression and stress than the Australian normative data, with approximately 6–8% reporting symptoms in the severe to extremely severe range. The strongest predictors of fathers' mental health difficulties were children's behaviour problems, daily stress arising from fathers' own needs and children's care needs, and low parenting satisfaction. Socio‐economic factors did not predict mental health difficulties. Conclusion This study is among one of the first to report the mental health of fathers of children with a disability in Australia. Findings highlight that some fathers of children with ID are at heightened risk of experiencing mental health difficulties, underscoring the importance of the provision of information and interventions to promote their mental health.

  March 20, 2014   doi: 10.1111/jir.12127   open full text
• Neonatal diagnosis of Down syndrome in the Netherlands: suspicion and communication with parents.
  M. D. Groot‐van der Mooren, R. J. B. J. Gemke, M. C. Cornel, M. E. Weijerman.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 14, 2014
  Objectives To analyse which dysmorphic features are most recognised in newborns with Down syndrome (DS). Furthermore to evaluate the communication techniques used by clinicians to inform parents about the postnatal diagnosis and compare these to current best practice guidelines. Study design Prospective study of a birth cohort of newborns with DS born between 1 January 2003 and 31 December 2006 registered by the Dutch Paediatric Surveillance Unit (DPSU). Results A total of 586 children with trisomy 21 were analysed. Most recognised dysmorphic features in DS newborns were ‘upslanted palpebral fissures’ (74.1%; n = 426), ‘hypotonia’ (73.7%; n = 424) and ‘epicanthic folds’ (68.5%; n = 394). The majority of parents were informed about the suspected diagnosis on the day of birth (76.5%; n = 390). Hospital deliveries had a significantly earlier suspected diagnosis (mean age 3–4 days) compared with home deliveries (mean age 7 days) (P < 0.05). In 10% (n = 44), paediatricians described dissatisfaction with the first conversation with parents. In 88.9% (n = 499) parents were both present when the diagnosis was told, however the child was not present during the conversation in 51.3% (n = 288). In 10.8% (n = 61) parents were not informed about local parent support groups or community resources. Conclusion DS is still often diagnosed after birth, usually on the first day of postnatal life. Most identified clinical features were upslanted palpebral fissures, epicanthic folds and hypotonia. Special attention for recognition of all present clinical features is needed for early diagnosis. Appropriate communication with the parents of the message that their child has DS can be difficult. Guidelines can help to make counselling easier and more effective, which in turn may increase parental satisfaction. Not all recommendations for the first conversation with parents were fully implemented in Dutch clinical practice.

  March 14, 2014   doi: 10.1111/jir.12125   open full text
• Maternal perceptions of sibling adaptation in Korean families of children with Down syndrome.
  H. Choi, M. Van Riper.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 11, 2014
  Background It is estimated that more than 500 infants with Down syndrome (DS) are born each year in Korea. DS affects not only these individuals, but family members as well. Some siblings deal successfully with the challenges of living with a child with DS and adapt well while others struggle or fail to adapt. The aims of this descriptive study were to explore how Korean mothers of children with DS perceive the adaptation of their typically developing (TD) children aged 4 to 19 and how family variables contribute to sibling adaptation. Method This descriptive, cross‐sectional study was conducted with 105 Korean mothers. Results Most mothers indicated that their TD children were not experiencing psychological or behavioural problems; however, many described problems in the sibling relationship. It was found that family factors (i.e. condition management effort, condition management ability, child's daily life, parental mutuality, family hardiness and social support) were strong predictors of sibling psychological, behavioural and relational adaptation. Demographic characteristics of the child with DS, the mother and the family appeared to significantly influence sibling adaptation. Conclusions These findings highlight the importance of familial contexts in understanding sibling adaptation. Knowledge of family factors associated with better adaptation in Korean siblings of child with DS will facilitate the development of culturally appropriate interventions for these children and their families. In addition, an awareness of demographic characteristics associated with sibling adaptation will help health care professionals identify siblings who are at increased risk of experiencing difficulties in adapting.

  March 11, 2014   doi: 10.1111/jir.12126   open full text
• Factor validity and reliability of the Aberrant Behavior Checklist‐Community (ABC‐C) in an Indian population with intellectual disability.
  R. Lehotkay, T. Saraswathi Devi, M. V. R. Raju, P. K. Bada, S. Nuti, N. Kempf, G. Galli Carminati.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 11, 2014
  Background In this study realised in collaboration with the department of psychology and parapsychology of Andhra University, validation of the Aberrant Behavior Checklist‐Community (ABC‐C) in Telugu, the official language of Andhra Pradesh, one of India's 28 states, was carried out. Methods To assess the factor validity and reliability of this Telugu version, 120 participants with moderate to profound intellectual disability (94 men and 26 women, mean age 25.2, SD 7.1) were rated by the staff of the Lebenshilfe Institution for Mentally Handicapped in Visakhapatnam, Andhra Pradesh, India. Rating data were analysed with a confirmatory factor analysis. The internal consistency was estimated by Cronbach's alpha. To confirm the test–retest reliability, 50 participants were rated twice with an interval of 4 weeks, and 50 were rated by pairs of raters to assess inter‐rater reliability. Results Confirmatory factor analysis revealed that the root mean square error of approximation (RMSEA) was equal to 0.06, the comparative fit index (CFI) was equal to 0.77, and the Tucker Lewis index (TLI) was equal to 0.77, which indicated that the model with five correlated factors had a good fit. Coefficient alpha ranged from 0.85 to 0.92 across the five subscales. Spearman's rank correlation coefficients for inter‐rater reliability tests ranged from 0.65 to 0.75, and the correlations for test–retest reliability ranged from 0.58 to 0.76. All reliability coefficients were statistically significant (P < 0.01). Conclusion The factor validity and reliability of Telugu version of the ABC‐C evidenced factor validity and reliability comparable to the original English version and appears to be useful for assessing behaviour disorders in Indian people with intellectual disabilities.

  March 11, 2014   doi: 10.1111/jir.12128   open full text
• Consistency between research and clinical diagnoses of autism among boys and girls with fragile X syndrome.
  J. Klusek, G. E. Martin, M. Losh.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. February 17, 2014
  Background Prior research suggests that 60–74% of males and 16–45% of females with fragile X syndrome (FXS) meet criteria for autism spectrum disorder (ASD) in research settings. However, relatively little is known about the rates of clinical diagnoses in FXS and whether such diagnoses are consistent with those performed in a research setting using gold standard diagnostic tools. Method This study explored whether boys and girls with FXS met criteria for ASD in a research setting using the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview‐Revised (ADI‐R), and then compared these data with the frequency of parent‐reported clinical diagnoses. We also examined child and family characteristics as potential diagnostic predictors across settings. Participants included 35 females and 51 males with FXS (mean age: 10 years), who were from Eastern and Midwestern regions of the USA. Results About half of the children met criteria for ASD on either the ADOS or ADI‐R, with ASD occurring three times more frequently in males than females (∼75% vs. ∼25%). In contrast, ∼25% of participants of both genders had received a clinical diagnosis of ASD. While cognitive and language skills predicted diagnostic outcome on the ADOS and ADI‐R, these skills did not predict clinical diagnoses. Executive functions predicted clinical diagnoses, but not diagnoses per the ADOS or ADI‐R. Conclusions ASD in FXS may be under‐diagnosed in clinical/educational settings, which raises questions regarding access to ASD‐related services.

  February 17, 2014   doi: 10.1111/jir.12121   open full text
• Psychopathology in adults with 22q11 deletion syndrome and moderate and severe intellectual disability.
  L. J. M. Evers, T. A. M. J. Amelsvoort, M. J. J. M. Candel, H. Boer, J. J. M Engelen, L. M. G. Curfs.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. February 17, 2014
  Background 22q11 deletion syndrome (22q11DS) is associated with mild or borderline intellectual disability (ID). There are hardly any reports on subjects with 22q11DS with moderate or severe ID, and therefore its behavioural and psychiatric characteristics are unknown. Method We describe behavioural and psychiatric characteristics of 33 adults with 22q11DS and a Full‐Scale IQ (FSIQ) below 55. Participants were divided into two groups: one group having a FSIQ ≤ 55 caused by intellectual decline (n = 21) and one group with a FSIQ ≤ 55 who had always functioned at this level (n = 12). Results High scores on psychopathology sub‐scales were found for both subgroups. 22q11DS patients with intellectual decline showed higher rates of co‐morbid psychopathology, particularly psychosis. Furthermore, psychosis and intellectual decline were positive correlated. Conclusion This is the first report addressing adult patients with 22q11DS and moderate to severe ID. Overall we found high levels of psychopathology with higher scores of psychopathology in the intellectual decline group. Life time psychosis seems to be related to deterioration.

  February 17, 2014   doi: 10.1111/jir.12117   open full text
• The stories of ‘snake children’: killing and abuse of children with developmental disabilities in West Africa.
  Mojdeh Bayat.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. January 27, 2014
  Background Killing and abuse of children with disabilities are covert phenomena, occurring in some developing regions, such as in some African countries. Similar to the practice of ritual killing of spirit children in Ghana, the phenomenon of the snake child in Cote d'Ivoire (known as Ivory Coast), is the ritual abandonment or killing of children with intellectual disability (ID). Method This study is a qualitative ethnographic investigation into understanding this phenomenon. Three major questions were of interest: (1) Who are the snake children? (2) How are these children viewed and treated? (3) What are ways of changing negative attitudes towards children with developmental disabilities? Results The practices of killing, abandonment and abuse of children with disabilities take place in Cote d'Ivoire today, although the extent is not known. Conclusion Killing and abuse of children with ID are explained within the context of indigenous African religions, animism and folk culture. The concept of disability ‘otherness’ and inferiority is also explored as a framework for reflection and ethical debate.

  January 27, 2014   doi: 10.1111/jir.12118   open full text
• Differences between juvenile offenders with and without intellectual disabilities in the importance of static and dynamic risk factors for recidivism.
  C. E. Put, J. J. Asscher, G. J. J. M. Stams, X. M. H. Moonen.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. August 06, 2013
  Background Juvenile offenders with intellectual disability (ID) have been largely ignored in the literature of risk assessment, while they are overrepresented in the criminal justice system, and ID is a risk factor for juvenile delinquency and recidivism. The aim of this study was to examine whether there are differences between juvenile offenders with and without ID in the impact of risk factors for recidivism. Both the impact of static and dynamic risk factors were examined. Static risk factors were examined in the criminal history domain and dynamic risk factors were examined in the domains of family, school, use of free time, friends, alcohol/drugs, attitude, aggression and skills. This knowledge is important for both assessment and treatment of juvenile offenders with ID. Method The sample consisted of adolescents who appeared before the courts for a criminal act and for whom the Washington State Juvenile Court Assessment (WSJCA) was completed. The group of ID juvenile offenders (n = 102) consisted of juvenile offenders with a formal diagnosis of ID, which means a full scale IQ of less than 70, coupled with significant deficits in adaptive behaviour, with childhood onset. The juveniles of this group are special education students or they have a formal diagnosis of a special education need. The group without ID (n = 526), was a random sample of all juvenile offenders without a formal diagnosis of ID. Results No differences were found between juvenile offenders with and without ID in the impact of risk factors on recidivism in most domains. However, in the skills domain, the relations between all risk factors and recidivism were significantly stronger in adolescents without ID than in adolescents with ID. Although not or only borderline statistically significant, these risk factors were all negatively related to recidivism in adolescents with ID, whereas these risk factors were significantly and positively related to recidivism in adolescents without ID. Conclusions There are few differences between juvenile offenders with and without ID in the impact of risk factors for recidivism, suggesting that the same assessment methods can be used for juvenile offenders with and without ID. There were, however, differences between juvenile offenders with and without ID in the skills domain. What these differences mean for the treatment of juvenile offenders is yet to be determined. For now it is important to be aware of potential negative (side) effects on recidivism when skills training is offered to juvenile offenders with ID.

  August 06, 2013   doi: 10.1111/jir.12078   open full text
• Inhibition deficits in individuals with intellectual disability: a meta‐regression analysis.
  A. Bexkens, L. Ruzzano, A. M. L. Collot d' Escury‐Koenigs, M. W. Van der Molen, H. M. Huizenga.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 31, 2013
  Background Individuals with intellectual disabilities (ID) are characterised by inhibition deficits; however, the magnitude of these deficits is still subject to debate. This meta‐analytic study therefore has two aims: first to assess the magnitude of inhibition deficits in ID, and second to investigate inhibition type, age, IQ and the presence/absence of comorbid problems as potential moderators of effect sizes. Method Twenty‐eight effect sizes comparing ID and age matched normal controls on inhibition tasks were included in a random effects meta‐regression. Moderators were age, IQ, inhibition type and presence/absence of comorbid disorder. Results The analysis showed a medium to large inhibition deficit in ID. Inhibition type significantly moderated effect size, whereas age and comorbid disorder did not. IQ significantly moderated effect size indicating increasing effect size with decreasing IQ, but only in studies that included a sample of ID participants with mean IQ > 70. The analysis indicated comparable deficits in behavioural inhibition and interference control, but no significant deficits in cognitive inhibition and motivational inhibition. Conclusions These results indicate that ID is characterised by a medium to large inhibition deficit in individuals with ID. ID seems not to be characterised by deficits in cognitive and motivational inhibition, which might indicate that distinct processes underlie distinct inhibition capacities.

  July 31, 2013   doi: 10.1111/jir.12068   open full text
• Observed changes in the alertness and communicative involvement of students with multiple and severe disability following in‐class mentor modelling for staff in segregated and general education classrooms.
  P. Foreman, M. Arthur‐Kelly, D. Bennett, J. Neilands, K. Colyvas.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 24, 2013
  Background The improvement of engagement and involvement in communicative and socially centred exchanges for individuals with multiple and severe disability (MSD) presents complex and urgent challenges to educators. This paper reports the findings of an intervention study designed to enhance the interactive skills of students with MSD using an in‐class mentor model of staff development to improve the skills and strategies of their communication partners in two distinct educational settings. Methods Observational data were collected on eight students with MSD and their 16 teachers and teachers' aides (paraprofessionals), using a multiple baseline across students design, replicated across special and general school setting types. Results Results indicated variable improvements in student alertness and increased communicative interactions. In some cases significant differences in communicative involvement and awake‐active‐alert activity were observed. Conclusions These findings underline the complexity of variables involved in delivering educational and communicative interventions for staff working with this population. Implications for further research and application to daily practices in classrooms are discussed.

  July 24, 2013   doi: 10.1111/jir.12066   open full text
• What is talked about? Community living staff experiences of talking with older people with intellectual disability about dying and death.
  M. Wiese, R. J. Stancliffe, A. Dew, S. Balandin, G. Howarth.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 21, 2013
  Background The aim of this study was to explore what community living staff talked about and did with people with intellectual disability (ID) to assist them to understand dying and death. Method Guided by grounded theory methodology, focus groups and one‐to‐one interviews were conducted with 22 staff who had talked about any topic relating to dying and death with their clients. Results There was little evidence that staff talked with, or did things with clients to assist understanding of the end of life, both prior to and after a death. Prior to death staff assisted clients in a limited way to understand about determining wishes in preparation for death, and what dying looks like by observance of its passage. Following a death staff offered limited assistance to clients to understand the immutability of death, and how the dead can be honoured with ritual, and remembered. Conclusions The findings have implications for why people with ID have only partial understanding of the end of life, the staff skills required to support clients’ understanding, and when conversations about the end of life should occur.

  July 21, 2013   doi: 10.1111/jir.12065   open full text
• Temporal analysis of attentional processes in spontaneous interactions between people with profound intellectual and multiple disabilities and their support workers.
  H. Neerinckx, P. Vos, W. Van Den Noortgate, B. Maes.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 21, 2013
  Background Few studies examined joint attention in interactions with people with profound intellectual and multiple disabilities (PIMD), although being an important component of high‐quality interaction. The purpose of this study is to describe initiating joint attention behaviour from people with PIMD and their support workers as well as the sequential relationship between initiating joint attention behaviour and attention episodes in spontaneous interactions. Method Video observations of 28 support worker–client dyads were coded using partial interval coding. Results Results show much variation across persons and dyads. Within the support worker–client dyad, there is not much joint attention but shared attention is frequently occurring. In general, people with PIMD are directing the attention of their interaction partner at low rates. The support workers are frequently directing the attention of the clients towards a topic of interest but not often through the tactile modality. The occurrence of an attention episode cannot be predicted on the basis of preceding initiating joint attention behaviour of the interaction partners. Conclusion This study presents directions for future research and implications for practice. It may increase support workers' knowledge of their own contributions, strengths and weaknesses in directing and maintaining attention within interactions with people with PIMD.

  July 21, 2013   doi: 10.1111/jir.12067   open full text
• Maternal supportive and interfering control as predictors of adaptive and social development in children with and without developmental delays.
  S. Green, B. Caplan, B. Baker.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 18, 2013
  Background Parents of children with developmental delays (DD) have been found to use more controlling behaviour with their children than parents of children with typical development (TD). While controlling behaviour is related to poorer developmental outcomes in TD children, there is little research on how it predicts outcomes in DD children. Furthermore, existing research tends to use inconsistent or non‐specific definitions of controlling behaviour, often combining parent control which follows the child's goal (e.g. supportive direction) and that which interferes with the child's goal (e.g. interference). Methods Participants were 200 mother–child dyads observed at child age 3, with follow‐up assessments of adaptive behaviour and social skills administered at child ages 5 and 6, respectively. We coded the frequency of both types of controlling behaviour based on mothers' interactions with their children with TD (n = 113) or DD (n = 87) at age 3. Results Mothers in the DD group used more interfering but not more supportive directive acts compared to mothers in the TD group. Adaptive behaviour was assessed at child age 5 and social skills were assessed at age 6. Higher frequency of supportive directive acts predicted better adaptive functioning for the TD group and better social skills for the DD group. Higher frequency of interfering acts predicted lower adaptive and social skills for children with DD but not with TD. Conclusions Results are discussed in terms of the differential developmental needs of children with and without DD as well as implications for early intervention.

  July 18, 2013   doi: 10.1111/jir.12064   open full text
• Outcomes in young adulthood: are we achieving community participation and inclusion?
  K. M. Gray, A. Piccinin, C. M. Keating, J. Taffe, T. R. Parmenter, S. Hofer, S. L. Einfeld, B. J. Tonge.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 18, 2013
  Background Despite recognition of the importance of integrated community living and support, there is evidence that parents remain the primary caregivers of young adults with intellectual disability (ID). In addition, employment rates remain low in this population. This study aimed to investigate the changes in living arrangements and participation in daytime activities over time in a community population of young people with ID. Method The sample consisted of 536 participants aged 4.0–18.9 years at Wave 1, followed up at Wave 5 when aged 20.5–37.6 years. Information was collected on their living arrangements and daytime activities at both time points, along with living skills and information on community social inclusion at Wave 5. For parents still caring for their adult child with ID, information was also collected on parental ratings of their own mental and physical health, and their satisfaction with the long‐term care arrangements for their adult child. Results A significant proportion of young people were still living with their parents at Wave 5. A greater proportion of those with a severe–profound degree of ID were living in residential care. Parents caring for their adult child reported high levels of mental health problems and dissatisfaction with the long‐term care arrangements for their child. A small proportion of young people were in paid employment, and the majority was engaged in structured activities provided for those with an ID. Over one‐third of the sample participated in a structured daytime activity for 10 or fewer hours per week, and 7% were not engaged in any structured daytime activity. Conclusions These results suggest that adequate provision of accommodation and employment services for young adults with an ID is lacking. In many cases the responsibility of care continues to reside with parents as their children transition from childhood to adulthood. Greater attention is needed to address these issues and facilitate social inclusion and integration for young people with ID.

  July 18, 2013   doi: 10.1111/jir.12069   open full text
• Resilient parenting of preschool children at developmental risk.
  R. Ellingsen, B. L. Baker, J. Blacher, K. Crnic.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 09, 2013
  Background Given the great benefits of effective parenting to child development under normal circumstances, and the even greater benefits in the face of risk, it is important to understand why some parents manage to be effective in their interactions with their child despite facing formidable challenges. This study examined factors that promoted effective parenting in the presence of child developmental delay, high child behaviour problems, and low family income. Method Data were obtained from 232 families at child age 3 and 5 years. Using an adapted ABCX model, we examined three risk domains (child developmental delay, child behaviour problems, and low family income) and three protective factors (mother's education, health, and optimism). The outcome of interest was positive parenting as coded from mother–child interactions. Results Levels of positive parenting differed across levels of risk. Education and optimism appeared to be protective factors for positive parenting at ages 3 and 5, and health appeared to be an additional protective factor at age 5. There was an interaction between risk and education at age 3; mothers with higher education engaged in more positive parenting at higher levels of risk than did mothers with less education. There was also an interaction between risk and optimism at age 3; mothers with higher optimism engaged in more positive parenting at lower levels of risk than did mothers with less optimism. The risk index did not predict change in positive parenting from age 3–5, but the protective factor of maternal health predicted positive changes. Conclusions This study examined factors leading to positive parenting in the face of risk, a topic that has received less attention in the literature on disability. Limitations, future directions, and implications for intervention are discussed.

  July 09, 2013   doi: 10.1111/jir.12063   open full text
• Working memory development in children with mild to borderline intellectual disabilities.
  M. J. Van der Molen, L. A. Henry, J. E. H. Van Luit.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 27, 2013
  Background The purpose of the current cross‐sectional study was to examine the developmental progression in working memory (WM) between the ages of 9 and 16 years in a large sample of children with mild to borderline intellectual disabilities (MBID). Baddeley's influential WM model was used as a theoretical framework. Furthermore, the relations between WM on the one hand, and scholastic skills (arithmetic and reading) on the other were examined. Method One hundred and ninety‐seven children with MBID between 9 and 16 years old participated in this study. All children completed several tests measuring short‐term memory, WM, inhibition, arithmetic and single word reading. Results WM, visuospatial short‐term memory and inhibition continued to develop until around age 15 years. However verbal short‐term memory showed no further developmental increases after the age of 10 years. Verbal short‐term memory was associated with single word reading, whereas inhibition was associated with arithmetic. Discussion The finding that verbal short‐term memory ceases to develop beyond the age of 10 years in children with MBID contrasts with results of studies involving typically developing children, where verbal short‐term memory develops until around age 15 years. This relative early developmental plateau might explain why verbal short‐term memory is consistently considered weak in children with MBID.

  June 27, 2013   doi: 10.1111/jir.12061   open full text
• The individual supported living (ISL) manual: a planning and review instrument for individual supported living arrangements for adults with intellectual and developmental disabilities.
  E. Cocks, S. Thoresen, M. Williamson, R. Boaden.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 24, 2013
  Background Following the closure of large residential facilities over the past several decades, emphasis on community living for adults with developmental disabilities has strengthened. However, the concept of community living is ambiguous. The term is often associated with congregation of people with disabilities in ordinary houses ‘in’ the community. Group homes, the most common contemporary formal expression of ‘community living’, may use ordinary houses and accommodate a small number of residents comparable to a large family. Individual supported living (ISL) arrangements around a single person with a disability using person‐centred principles are occurring with increasing frequency. The ISL manual was developed over 4 years in two sequential research projects to produce a quality framework articulating ISL and operationalising the framework into a review and planning instrument for ISL arrangements. Method  The ISL manual was developed in three stages and overseen by a reference group of key stakeholders purposively recruited as well‐versed in ISL. The first stage operationalised the quality framework over two half‐day workshops with a group of key informants. Participants identified indicators and sources of evidence for each attribute of the quality framework. The quality framework, indicators, and sources of evidence were compiled into an initial evaluation instrument of nine themes consisting of 27 attributes. This was piloted in two rounds to enhance the utility of the instrument and develop the final manual which contained eight themes and 21 attributes. A comprehensive literature search was carried out to identify relevant empirical ISL studies. Results The literature search identified four empirical studies that incorporated ISL over the preceding 3 years. A previous literature search from the first research project that produced the quality framework spanned 27 years and identified five empirical studies. We concluded that the empirical base for developing evidence for the nature and outcomes of ISL arrangements was sparse. The ISL manual and scoring booklet developed in the current research project includes six illustrative case studies of ISL, instructions for potential users to review living arrangements or set up a new arrangement, and the review framework consisting of descriptions of themes and attributes, indicators, and sources of evidence. Conclusions The dearth of empirical studies of ISL arrangements for people with developmental disabilities, despite increased policy emphasis on individualised options, underscores the importance of planning and review tools to promote quality outcomes. The ISL manual can assist adults with developmental disabilities, families, carers, and service providers to plan and review ISL arrangements. Further research will enhance the properties of this instrument and establish the relationship between quality of ISL arrangements and outcomes such as quality of life, and participation and inclusion.

  June 24, 2013   doi: 10.1111/jir.12059   open full text
• Person‐centred reviews as a mechanism for planning the post‐school transition of young people with intellectual disability.
  A. Kaehne, S. Beyer.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 24, 2013
  Background Person‐centred planning has played a key role in the transformation of intellectual disabilities services for more than a decade. The literature has identified clear advantages for service users when service delivery is planned around the individual rather than the user is made to fit into service structures. Researchers however have pointed out that there is a lack of evidence that person‐centred planning positively influences outcomes for users. Method Our study examined the application of person‐centred planning during transition for young people with intellectual disabilities. We investigated the nature and content of 44 person‐centred reviews of transition planning for this population in a local authority in the UK. We carried out a documentary analysis of all person‐centred plans and conducted telephone interviews with all families participating in the programme. We focused on the issue of attendance at review meetings and what was discussed during the meetings. Results Analysis of the data shows an increase in the participation of young people and carers at review meetings and a significant shift in topics discussed during the transition planning process compared with previous programmes. However, some of these effects may dissipate once young people are actually leaving school as planning well is not synonymous with having an improved range of placement options. Conclusions The findings suggest that person‐centred planning can impact positively on some aspects of transition planning, while it may be too optimistic to expect radical improvement in other area. Key to further improvements is to complement person‐centred planning with consistent involvement of all relevant stakeholders in planning for individuals.

  June 24, 2013   doi: 10.1111/jir.12058   open full text
• Test of an intervention to improve knowledge of women with intellectual disabilities about cervical and breast cancer screening.
  J. G. Swaine, S. L. Parish, K. Luken, E. Son, P. Dickens.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 24, 2013
  Background There is a critical need for evidence‐based health education interventions for women with intellectual disabilities (IDs) to promote receipt of preventive health screenings. Previous research has established Women Be Healthy, an 8‐week classroom‐style intervention designed to teach women with IDs about breast and cervical cancer screenings, as a promising practice. However, additional research is needed to determine how to further improve screening‐related knowledge gains. This study aimed to test a modified version of Women Be Healthy, Women Be Healthy 2, and compare its effectiveness in increasing knowledge gains to the original intervention. Method Women living in the community across one state in the United States were randomly assigned to a treatment (n = 98), delayed treatment, (n = 35), or no intervention group (n = 65). Women in the treatment group received Women Be Healthy, and women in the delayed treatment group received the modified Women Be Healthy 2. Baseline and post‐intervention interviews were conducted to measure knowledge of cervical and breast cancer screening. Knowledge scores were compared across groups. Results Among the nine knowledge items measured, one breast knowledge measure and one cervical knowledge measure showed statistically significant group differences; marginally significant differences were observed for two other knowledge measures. After adjusting for covariates, women who received Women Be Healthy 2 had increased knowledge overall compared with the women receiving no intervention. Conclusion Women Be Healthy 2 is promising, but additional efforts appear necessary to increase the knowledge women with IDs have about cervical and breast cancer screening.

  June 24, 2013   doi: 10.1111/jir.12062   open full text
• A quantitative assessment of educational integration of students with Down syndrome in the Netherlands.
  G. De Graaf, G. Van Hove, M. Haveman.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 24, 2013
  Background In the Netherlands, as in many other countries, there are indications of an inclusive school policy for children with Down syndrome. However, there is a lack of studies that evaluate to what extent this policy has actually succeeded in supporting the mainstreaming of these students. Method For the period 1984–2011, the number of children with Down syndrome entering regular education and the percentage of children still in regular education after 1–7 years were estimated on basis of samples from the database of the Dutch Down Syndrome Foundation. These estimations were combined with historical demographic data on the total number of children with Down syndrome in primary school age. Validity of the model was examined by comparison of the model‐based estimations of numbers and percentages in regular education with relevant available empirical data from the Dutch Ministry of Education and from Dutch special schools. Results The percentage of all children with Down syndrome in the age range 4–13 in regular primary education has risen from 1% or 2% (at the very most about 20 children) in 1986–1987, to 10% (about 140 children) in 1991–1992, to 25% (about 400) in 1996–1997, to 35% (about 650) in 2001–2002 and to 37% (about 800) since 2005–2006. The proportional increase stopped in recent years. Conclusion During the 1980s and 1990s, clearly more and more children with Down syndrome were in regular education, being supported by the then existing ad hoc regulations aimed at providing extra support in regular education. In the Netherlands, in 2003, these temporary regulations were transformed into structural legislation for children with disabilities. With regard to the mainstreaming of students with Down syndrome, the 2003 legislation has consolidated the situation. However, as percentages in regular education stayed fairly constant after 2000, it has failed to boost the mainstreaming of children with Down syndrome. The results of this study are discussed in the context of national and international legislation and educational policy.

  June 24, 2013   doi: 10.1111/jir.12060   open full text
• Mental Health of Children and Adolescents with Intellectual and Developmental Disabilities. A Framework for Professional Practice, First Edition.
  Bushra Rauf.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 19, 2013
  There is no abstract available for this paper.

  June 19, 2013   doi: 10.1111/j.1365-2788.2012.01582.x   open full text
• Prevalence and characteristics of children with mild intellectual disability in a French county.
  M. David, K. Dieterich, A. Billette de Villemeur, P.‐S. Jouk, J. Counillon, B. Larroque, J. Bloch, C. Cans.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 10, 2013
  Background Studies conducted on mild intellectual disability (MID) in children are infrequent and the prevalence rates vary widely. This study aimed to estimate the prevalence of MID in children in a French county (Isère), to describe the clinical signs and associated comorbidities, and to specify the aetiologies of this disability. Methods The target population was comprised of the 15 100 children born in 1997 residing in Isère County, France, in 2008. Our goal was to find the children in this group with MID diagnosed between 9 and 13 years of age. MID was defined as an overall IQ score of between 50 and 69 [International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD‐10)]; this definition was adjusted for the study by integrating confidence intervals so that the risk of IQ measurement relativity and possible discrepancy of scores could be taken into account. Children were identified through an administrative data source designed to assist disabled persons that contains health information, and an educational data source. Parents who agreed to let their children participate responded to an in‐depth questionnaire on their child's medical and academic history. A genetic investigation was proposed for those children whose MID had an unknown aetiology. Results The preliminary selection included 267 children, resulting in a prevalence rate of 18 per 1000 (CI [15.6; 19.9]), within the expected mean. Of these 267 cases, 181 families agreed to participate in the study (68%). MID more often affected boys [male gender ratio = 1.4 (CI [1.2; 1.6])], low socioeconomic groups, and families with a history of intellectual disability. The clinical signs and comorbidities associated with MID were very frequent, with 54% spoken language disorders and 10% pervasive developmental disorder. Only 9% of the children had undergone a genetic investigation before the study. The known aetiology rate for MID was 19% among all the children who had had genetic tests performed. Conclusion MID is an important public health issue based on its prevalence. The associated clinical signs and comorbidities may be warning signs of MID in case of learning difficulties. This study may help decision‐makers to develop and organise screening and care for MID.

  June 10, 2013   doi: 10.1111/jir.12057   open full text
• Association of the family environment with behavioural and cognitive outcomes in children with chromosome 22q11.2 deletion syndrome.
  T. M. Allen, J. Hersh, K. Schoch, K. Curtiss, S. R. Hooper, V. Shashi.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 07, 2013
  Background Children with 22q11.2 deletion syndrome (22q11DS) are at risk for social‐behavioural and neurocognitive sequelae throughout development. The current study examined the impact of family environmental characteristics on social‐behavioural and cognitive outcomes in this paediatric population. Method Guardians of children with 22q11DS were recruited through two medical genetics clinics. Consenting guardians were asked to complete several questionnaires regarding their child's social, emotional and behavioural functioning, as well as family social environment and parenting styles. Children with 22q11DS were asked to undergo a cognitive assessment, including IQ and achievement testing, and measures of attention, executive function and memory. Results Modest associations were found between aspects of the family social environment and parenting styles with social‐behavioural and cognitive/academic outcomes. Regression models indicated that physical punishment, socioeconomic status, parental control and family organisation significantly predicted social‐behavioural and cognitive outcomes in children with 22q11DS. Conclusion Characteristics of the family social environment and parenting approaches appear to be associated with functional outcomes of children with 22q11DS. Understanding the impact of environmental variables on developmental outcomes can be useful in determining more effective targets for intervention. This will be important in order to improve the quality of life of individuals affected by 22q11DS.

  June 07, 2013   doi: 10.1111/jir.12054   open full text
• Aerobic training improved low‐grade inflammation in obese women with intellectual disability.
  F. J. Ordonez, M. A. Rosety, A. Camacho, I. Rosety, A. J. Diaz, G. Fornieles, N. Garcia, M. Rosety‐Rodriguez.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 07, 2013
  Background Obesity is a major health problem in people with intellectual disabilities. It is also widely accepted that low‐grade systemic inflammation associated to obesity plays a key role in the pathogenic mechanism of several disorders. Fortunately, physical activity has shown to improve inflammation in people with metabolic syndrome and type 2 diabetes. Accordingly, we assessed the influence of aerobic training on pro‐inflammatory cytokines and acute phase proteins in women with Down syndrome. Methods To achieve this outcome, 20 premenopausal obese young women with Down syndrome volunteered for this study. Eleven were randomly assigned to the intervention group and performed a 10‐week aerobic training programme, three sessions per week, consisting of a warm‐up then a 30‐ to 40‐min treadmill exercise at a work intensity of 55–65% of peak heart rate followed by a cooling‐down period. The control group included nine age‐, sex‐ and body mass index‐matched women with Down syndrome. Fat mass percentage and fat distribution were measured. Plasmatic levels of tumour necrosis factor (TNF)‐α, interleukin (IL)‐6 and fibrinogen were assessed by commercial enzyme‐linked immunosorbent assay kits. C‐reactive protein (CRP) was assessed by nephelometry. Results Plasmatic levels of TNF‐α (11.7 ± 1.6 vs. 9.2 ± 1.3 pg/ml; P = 0.022), IL‐6 (8.2 ± 1.1 vs. 6.1 ± 0.9 pg/ml; P = 0.014) and high sensitive CRP (0.62 ± 0.11 vs. 0.53 ± 0.09 mg/dl; P = 0.009) were significantly reduced in the intervention group. Further, significant correlations between plasmatic and anthropometric parameters were found. Conclusion A 10‐week training programme reduced pro‐inflammatory cytokines and acute phase proteins in obese young women with Down syndrome. Long‐term, well‐conducted studies are still required to determine whether correction of this low‐grade inflammation improves clinical outcomes of women with trisomy 21.

  June 07, 2013   doi: 10.1111/jir.12056   open full text
• Stranger danger awareness in Williams syndrome.
  D. M. Riby, H. Kirk, M. Hanley, L. M. Riby.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. May 29, 2013
  Background The developmental disorder Williams syndrome (WS) is characterised by a distinctive cognitive profile and an intriguing social phenotype. Individuals with the disorder are often highly social engaging with familiar and unfamiliar people and once in an interaction they often show subtle abnormalities of social behaviour. Atypically increased approach to unfamiliar people is widely reported in the existing literature for both children and adults. Parents frequently report interactions with unfamiliar people as a major concern. Methods In this study we aimed to evaluate ‘stranger danger’ awareness using a video vignette task with individuals who had WS. When linked to other components of the WS phenotype (e.g. reduced intellectual ability, increased social approach) an awareness of stranger danger is particularly important. Results Qualitative and quantitative data showed that young people with WS have difficulties making judgements about whether or not to trust and engage in conversation with unfamiliar people. Qualitative data showed that individuals with WS often suggested that they would engage in an interaction with an unfamiliar person. Conclusions The findings have substantial implications for the safety of young people with the disorder and emphasise the need for intervention regarding this behaviour.

  May 29, 2013   doi: 10.1111/jir.12055   open full text
• Psychometric properties of the Parenting Stress Index with parents of children with autistic disorder.
  L. A. Dardas, M. M. Ahmad.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. May 22, 2013
  Purpose The purpose of this study was to examine the psychometric properties and the theoretical structure of the Parenting Stress Index‐short form (PSI‐SF) with Jordanian parents of children with autistic disorder. Methods Using a cross‐sectional design for data collection, the convenience sample of the study was composed of 184 Jordanian parents of children with autistic disorder. The factor structure for the PSI‐SF was examined using confirmatory and exploratory factor analyses. Results We found that the modified three‐factor model (30 items) fits the data significantly better than the 36‐item model. The results showed that the 12 items of the Parental Distress sub‐scale support the original scale structure. However, items in the Parent–Child Dysfunctional Interaction and Difficult Child sub‐scales did not show stability in their structure. The results in this study showed that the PSI‐SF in its 30‐item model has endorsed the necessary validity of the scale with parents of children with autistic disorder. The study provides information on the effects of Arab culture on the validity of PSI‐SF. Conclusion It is recommended to use the new factors structure of the PSI‐SF with the 30 items in the studies that intend to examine the stress among parents with children with autistic disorder in the Arab world.

  May 22, 2013   doi: 10.1111/jir.12053   open full text
• Family demands, social support and family functioning in Taiwanese families rearing children with Down syndrome.
  C‐Y. Hsiao.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. May 20, 2013
  Background Down syndrome (DS) affects not only children but also their families. Much remains to be learned about factors that influence how families of children with DS function, especially families in non‐Western populations. The purpose of this cross‐sectional, correlational study was to examine how family demographics, family demands and social support relate to family functioning as well as the potential mediating effect of social support on the relationship between family demands and family functioning in Taiwanese families of children with DS. Method One hundred and fifty‐five parents (80 mothers and 75 fathers) from 83 families independently completed mailed questionnaires. Data were analysed using a principal component analysis and mixed linear modelling. Results Families having older children with DS, greater parental education, higher family income, fewer family demands and greater social support contributed to healthier family functioning. Social support partially mediated the effects of family demands on family functioning. Conclusions Family demographics, family demands and social support appear to be important factors that may play a critical role in how Taiwanese families respond to the birth of a child with DS. Care of children with DS and their families is likely to be more effective if professionals working with these families are aware of factors that contribute to healthy family functioning.

  May 20, 2013   doi: 10.1111/jir.12052   open full text
• The postschool outcomes of students with mild intellectual disability: does it get better with time?
  E. C. Bouck.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. May 09, 2013
  Background Although students with mild intellectual disability (MID) present unique educational needs and considerations, in research and in practice, they are sometimes aggregated with students with learning disabilities and emotional disorders and considered mild disabilities or aggregated with students with moderate/severe intellectual disability and labelled as intellectual disability. Method This study is a secondary analysis of the NLTS2 data to understand the immediate (i.e. within 2 years) and longer‐term outcomes (i.e. within 4 years, within 6 years and within 8 years) of secondary students with MID. Frequency distributions and a significant test were conducted to analyse data from the NLTS2. Results Students with MID struggled with postschool success when considering employment, postsecondary education, and independent living. Across the span of time since graduation (i.e. within 2 years, within 4 years, within 6 years, and within 8 years), a lack of consistent pattern existed, in general, for these students with regards to outcomes. Students did not necessarily improve or decline in their outcomes the longer they were out of school. Conclusions The postschool outcome data warrant critical examination of the factors contributing to the poor outcomes. The field needs to systematically understand what schools can control with regards to improved outcomes for students with MID – particularly employment regardless of the length of time out of school and independent living as the time since school exit increases – and then implement such practices.

  May 09, 2013   doi: 10.1111/jir.12051   open full text
• Mortality from sudden unexpected death in epilepsy (SUDEP) in a cohort of adults with intellectual disability.
  R. Kiani, F. Tyrer, A. Jesu, S. Bhaumik, S. Gangavati, G. Walker, S. Kazmi, M. Barrett.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. May 07, 2013
  Background People with intellectual disability (ID) and epilepsy are more likely to die prematurely than the general population. A significant number of deaths in people with epilepsy may be potentially preventable through better seizure control, regular monitoring and raising awareness among patients and carers. The aim of this project was to study mortality from sudden unexpected death in epilepsy (SUDEP) in adults with ID. Methods All adults (≥20 years old) living in Leicester city, Leicestershire and Rutland, UK, with ID between 1993 and 2010 were identified using the Leicestershire Intellectual Disability Register database. People with and without ID who died during the same period were identified using death certificate data from the Office for National Statistics (ONS). Deaths from probable and definite SUDEP were identified. Additional information on adults with ID who had died from probable or definite SUDEP was obtained from case notes and post‐mortem reports, where available. Cases of probable and definite SUDEP in adults with ID were compared with the general population using standardised mortality ratios (SMRs). Results A total of 898 adults with ID had died over the 18‐year study period. Of these, 244 deaths (27%) occurred in people with ID who had a diagnosis of epilepsy. Twenty‐six people with ID died from probable or definite SUDEP, which was the second most common cause of death among adults with ID and epilepsy. All‐cause specific SMRs were 2.2 [95% confidence interval (CI): 2.0–2.4] and 2.8 (95% CI: 2.5–3.1) for men and women with ID respectively. SMRs were 3.2 (95% CI: 2.7–3.8) and 5.6 (95% CI: 4.6–6.7) for men and women with epilepsy and ID respectively. During the same study period, 83 adults without ID had died of probable or definite SUDEP. The SMRs for SUDEP in patients with ID were 37.6 for men (95% CI: 21.9–60.2) and 52.0 for women (95% CI: 23.8–98.8). We found that in the majority of ID cases there was little detailed documentation on the circumstances surrounding deaths, no communication with patients/carers about risk of SUDEP and an absence of post‐mortem reports or carers’ referral for bereavement counselling. Conclusion The authors believe that a comprehensive risk management under a multiagency/multidisciplinary framework should be undertaken for all adults with ID and epilepsy in day‐to‐day clinical practice to reduce mortality in people with ID.

  May 07, 2013   doi: 10.1111/jir.12047   open full text
• Evaluating a health behaviour model for persons with and without an intellectual disability.
  B. Brehmer‐Rinderer, L. Zigrovic, G. Weber.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 30, 2013
  Background Based on the idea of the Common Sense Model of Illness Representations by Leventhal as well as Lohaus's concepts of health and illness, a health behaviour model was designed to explain health behaviours applied by persons with intellectual disabilities (ID). The key proposal of this model is that the way someone understands the concepts of health, illness and disability influences the way they perceive themselves and what behavioural approaches to them they take. Method To test this model and explain health differences between the general population and person with ID, 230 people with ID and a comparative sample of 533 persons without ID were included in this Austrian study. Data were collected on general socio‐demographics, personal perceptions of illness and disability, perceptions of oneself and health‐related behaviours. Results Psychometric analysis of the instruments used showed that they were valid and reliable and hence can provide a valuable tool for studying health‐related issues in persons with and without ID. With respect to the testing of the suggested health model, two latent variables were defined in accordance to the theory. The general model fit was evaluated by calculating different absolute and descriptive fit indices. Most indices indicated an acceptable model fit for all samples. Conclusions This study presents the first attempt to explore the systematic differences in health behaviour between people with and without ID based on a suggested health model. Limitations of the study as well as implications for practice and future research are discussed.

  April 30, 2013   doi: 10.1111/jir.12046   open full text
• New measure for fathers of children with developmental challenges.
  A. R. Ly, W. A. Goldberg.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 30, 2013
  Background There is a relative lack of measures tailored to the study of fathers of children with developmental challenges (DCs). The goal of the current study was to create and validate a brief measure designed to capture the perceptions and experiences of these fathers. The Fathers of Children with Developmental Challenges (FCDC) questionnaire was designed to assess fathers' perceptions of the supports for, and challenges to, their efforts to be involved in the rearing of their children. Method Participants were 101 fathers of children with DCs who completed an online survey. Scale validation included tests to determine reliability, validity and factor structure. Used to establish validity were measures of parenting stress, parenting commitment, parent personality and child social‐communicative skills. Results Analyses indicated that the FCDC is reliable (α = 0.89), demonstrates content validity, construct validity and acts in theoretically expected ways. Factor analysis on the 20‐item measure yielded two sub‐scales: (1) impact on parenting, and (2) involvement with child intervention. Conclusions The FCDC fills a gap in the literature by offering an easy‐to‐administer self‐report measure of fathers' perceptions of supports for, and barriers to, their involvement with their children with DCs. The FCDC could assist professionals in delivering support services specifically for fathers of children with DCs.

  April 30, 2013   doi: 10.1111/jir.12044   open full text
• Taking each day as it comes: staff experiences of supporting people with Down syndrome and Alzheimer's disease in group homes.
  T. Iacono, C. Bigby, R. Carling‐Jenkins, J. Torr.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 30, 2013
  Background Disability staff are being increasingly required to support adults with Down syndrome who develop Alzheimer's disease. They have little understanding of the nature of care required, and may lack input from aged care and dementia services, which lack knowledge of intellectual disability. The aim of this study was to report on the experiences of disability staff in group homes supporting residents with Down syndrome and Alzheimer's disease in relation to their under understanding of what was happening to these residents, their responses to them, and how they felt about their support role. Method Disability support staff for nine adults with Down syndrome who had a diagnosis of Alzheimer's disease were interviewed twice, over intervals of 6–9 months. Interviews were transcribed and analysed for themes. Results Three key themes emerged – (i) struggling to understand change, (ii) taking each day as it comes, and (iii) he's got a disability and that's our job. Conclusions Staff had only limited understanding of how Alzheimer's disease impacted the adults with Down syndrome, their responses to changes were ad hoc, and they used strategies on a trial and error basis. They were committed to providing care, but at the risk of rejecting input and support. The need for collaboration across disability, and aged and disability care was evident to facilitate aging‐in‐place and planned care transitions.

  April 30, 2013   doi: 10.1111/jir.12048   open full text
• Obstacle course training can improve mobility and prevent falls in people with intellectual disabilities.
  E. Van Hanegem, L. Enkelaar, E. Smulders, V. Weerdesteyn.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 19, 2013
  Background Persons with intellectual disabilities (ID) constitute a special‐needs population at high risk of falling. This is the first study to evaluate whether obstacle course training can improve mobility and prevent falls in this population. Methods The intervention was implemented as part of an institution‐wide health care improvement plan aimed at reducing falls at a residential facility for people with ID. It comprised an annual screening of each resident for his or her individual fall risk. Subsequently, the group of ambulatory persons with a moderate to high fall risk (n = 39) were offered 10‐session obstacle course training to improve their balance and gait abilities. Mobility was assessed pre‐intervention, mid‐term and post‐intervention with the Performance Oriented Mobility Assessment (POMA), the Timed Up and Go (TUG) and the 10‐meter walking test. The number of falls was compared between the year before and after intervention. Results The number of falls decreased by 82% (P < 0.001). POMA scores significantly improved from pre‐intervention to mid‐term (mean difference ± SD, 1.8 ± 2.9, P = 0.001), from mid‐term to post‐intervention (2.0 ± 2.9, P < 0.001), and from pre‐intervention to post‐intervention (3.8 ± 4.3, P < 0.001). Participants completed the 10‐meter walking test faster at the post‐intervention compared with the pre‐intervention assessment (difference ± SD, 2.1 ± 5.1 s, P = 0.022). TUG scores did not improve significantly. Conclusions The present study provides preliminary evidence for the effectiveness of obstacle course training in improving mobility and preventing falls in people with ID. As falls are a significant health concern in this population, further research is advocated to provide conclusive evidence for the suggested beneficial effects of exercise interventions.

  April 19, 2013   doi: 10.1111/jir.12045   open full text
• Sexual understanding, sources of information and social networks; the reports of young people with intellectual disabilities and their non‐disabled peers.
  A. Jahoda, J. Pownall.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 19, 2013
  Background Sexual development plays a vital part in young people's emotional adjustment. Method This study compared the sexual understanding of 30 adolescents with mild intellectual disabilities (ID) and 30 non‐disabled adolescents, along with their reports of where they obtained sexual information, and the nature of their social networks and support. Results As expected, the non‐disabled young people had superior levels of knowledge. However, an interaction was found between group and gender. The non‐disabled young women had a better grasp of sexual matters than men, whereas the opposite was the case for those with ID. The non‐disabled young people reported more formal and informal sources of sexual information and described larger social networks than those with ID. Conclusions These findings highlight the need to tackle the barriers to sexual knowledge faced by young people with ID, and the need to take account of the broader social context of their lives when doing so. This includes the attitudes to the developing sexuality of young women with ID in particular.

  April 19, 2013   doi: 10.1111/jir.12040   open full text
• Children with autism spectrum disorder (ASD) attend typically to faces and objects presented within their picture communication systems.
  K. Gillespie‐Smith, D. M. Riby, P. J. B. Hancock, G. Doherty‐Sneddon.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 19, 2013
  Background Children with autism spectrum disorder (ASD) may require interventions for communication difficulties. One type of intervention is picture communication symbols which are proposed to improve comprehension of linguistic input for children with ASD. However, atypical attention to faces and objects is widely reported across the autism spectrum for several types of stimuli. Method In this study we used eye‐tracking methodology to explore fixation duration and time taken to fixate on the object and face areas within picture communication symbols. Twenty‐one children with ASD were compared with typically developing matched groups. Results Children with ASD were shown to have similar fixation patterns on face and object areas compared with typically developing matched groups. Conclusions It is proposed that children with ASD attend to the images in a manner that does not differentiate them from typically developing individuals. Therefore children with and without autism have the same opportunity to encode the available information. We discuss what this may imply for interventions using picture symbols.

  April 19, 2013   doi: 10.1111/jir.12043   open full text
• Family quality of life and psychological well‐being in parents of children with autism spectrum disorders: a double ABCX model.
  P. Pozo, E. Sarriá, A. Brioso.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. April 19, 2013
  Background This study examined family quality of life (FQOL) and psychological well‐being from a multidimensional perspective. The proposed model was based on the double ABCX model, with severity of the disorder, behaviour problems, social support, sense of coherence (SOC) and coping strategies as components. Method One hundred and eighteen parents (59 mothers and 59 fathers) with a child diagnosed with autism spectrum disorders (ASD) participated in the study. Separate path analyses were performed to evaluate models of FQOL and psychological well‐being for mothers and fathers. Results In all models, behaviour problems had a negative indirect effect on adaptation (FQOL and psychological well‐being) through SOC. For both mothers and fathers, the severity of the disorder and social support played significant roles in FQOL models. Coping strategies were related with adaptation, active avoidance coping with FQOL for fathers and positive and problem‐focused coping with psychological well‐being for mothers. Conclusions The results of this study highlight the value of the multidimensional approach. The specific patterns of results for mothers and fathers contribute to comprehension of the psychological adaptation of parents. Findings could be taken into account in interventions with families.

  April 19, 2013   doi: 10.1111/jir.12042   open full text
• Intellectual disabilities and power spectra analysis during sleep: a new perspective on borderline intellectual functioning.
  M. Esposito, M. Carotenuto.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 21, 2013
  Background The role of sleep in cognitive processes has been confirmed by a growing number of reports for all ages of life. Analysing sleep electroencephalogram (EEG) spectra may be useful to study cortical organisation in individuals with Borderline Intellectual Functioning (BIF), as seen in other disturbances even if it is not considered a disease. The aim of this study was to determine if the sleep EEG power spectra in children with BIF could be different from typically developing children. Methods Eighteen BIF (12 males) (mean age 11.04; SD ± 1.07) and 24 typical developing children (14 men) (mean age 10.98; SD ± 1.76; P = 0.899) underwent an overnight polysomnography (PSG) recording in the Sleep Laboratory of the Clinic of Child and Adolescent Neuropsychiatry, after one adaptation night. Sleep was subdivided into 30‐s epochs and sleep stages were scored according to the standard criteria and the power spectra were calculated for the Cz‐A2 channel using the sleep analysis software Hypnolab 1.2 (SWS Soft, Italy) by means of the Fast Fourier Transform and the power spectrum was calculated for frequencies between 0.5 and 60 Hz with a frequency step of 1 Hz and then averaged across the following bands delta (0.5–4 Hz), theta (5–7 Hz), alpha (8–11 Hz), sigma (11–15 Hz), and beta (16–30 Hz), gamma (30–60 Hz) for S2, SWS and REM (Rapid Eye Movement) sleep stages. Results BIF have a reduced sleep duration (total sleep time; P < 0.001), and an increased rate of stage shifts (P < 0.001) and awakenings (P < 0.001) and WASO (wakefulness after sleep onset) % (P < 0.001); the stage 2% (P < 0.001), and REM% (P < 0.001) were lower and slow‐wave sleep percentage was slightly higher (P < 0.001). All children with BIF had an AHI (apnoea–hypopnea index) less than 1 (mean AHI = 0.691 ± 0.236) with a mean oxygen saturation of 97.6% and a periodic leg movement index (PLMI) less than 5 (mean PLMI = 2.94 ± 1.56). All sleep stages had a significant reduction in gamma frequency (30–60 Hz) (P < 0.001) and an increased delta frequency (0.5–4.0 Hz) (P < 0.001) power in BIF subjects compared with typically developing children. Conclusion Our findings shed light on the importance of sleep for cognition processes particularly in cognitive borderline dysfunction and the role of EEG spectral power analysis to recognize sleep characteristics in BIF children.

  March 21, 2013   doi: 10.1111/jir.12036   open full text
• Responsiveness to self‐report questions about loneliness: a comparison of mainstream and intellectual disability‐specific instruments.
  R. J. Stancliffe, N. J. Wilson, C. Bigby, S. Balandin, D. Craig.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 19, 2013
  Background We compared responsiveness to two self‐report assessments of loneliness: the UCLA Loneliness Scale (UCLALS) designed for the general community, and the Modified Worker Loneliness Questionnaire (MWLQ) designed for people with intellectual disability (ID). Methods Participants were 56 older adults with disability – 40 individuals with ID and 16 without ID. They were individually assessed on the MWLQ and the UCLALS. The difficulty of the items in both scales was evaluated in relation to readability, features of question wording, question length and response format. Results The UCLALS was more difficult than the MWLQ on each of the difficulty dimensions assessed. There was significantly greater responsiveness to the MWLQ than the UCLALS, especially among people with ID. Conclusions To enable as many people with ID as possible express their views on loneliness, the ID‐specific MWLQ is a much better choice. However, this choice comes at the cost of ready comparison to loneliness data for the general community, which is available for widely used assessments such as the UCLALS.

  March 19, 2013   doi: 10.1111/jir.12024   open full text
• Family functioning in Asian families raising children with autism spectrum disorders: the role of capabilities and positive meanings.
  J. Xue, J. Ooh, I. Magiati.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 19, 2013
  Background There has been increasing interest in exploring the factors contributing to successful adaptation and family functioning in ethnically and culturally diverse families who raise children with autism spectrum disorders (ASD), in order to inform more appropriate strength‐based family support services. This pilot study used the Family Adjustment and Adaptation Response (FAAR) model as a theoretical framework to investigate the role of families' capabilities (coping strategies and resources of support) and positive meanings in raising a child with ASD in family functioning in an Asian context. Methods Sixty‐five Singaporean parents of 3‐ to 11‐year‐old children with ASD completed a series of questionnaires on demands, coping strategies, social support, positive meanings and family functioning. Results Families reported a number of helpful coping strategies. Coping through family integration/optimism was most helpful, followed by understanding the condition and by developing esteem and psychological stability. Reported capabilities, but not positive meanings, mediated the relationship between demands and family functioning. Conclusion The findings are discussed in relation to existing literature, possible specific cultural issues, and the strengths and limitations of the study. Implications for supporting families of children with ASD in different social and cultural contexts are also discussed.

  March 19, 2013   doi: 10.1111/jir.12034   open full text
• Respecting autonomy in the end‐of‐life care of people with intellectual disabilities: a qualitative multiple‐case study.
  N. Bekkema, A. J. E. de Veer, C. M. P. M. Hertogh, A. L. Francke.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 19, 2013
  Background The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end‐of‐life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics. Method This study consisted of a qualitative design in which the cases of 12 recently deceased people with ID were reconstructed by interviewing the caregivers and relatives who were closest to the person at the end of their life. A cyclic process of data collection and analysis was used. Interviews were transcribed verbatim and data were analysed inductively. Results Respect for autonomy in the end‐of‐life care of people with ID was mainly reflected in helping the person with ID familiarise with three transitions: new information on the diagnosis and prognosis, changing care needs and wishes, and important decisions that were at stake. In respecting autonomy, relatives and caregivers encountered several challenges. These concerned ascertaining information needs, communicating about illness and death, inexperience in end‐of‐life care, eliciting current and hidden last wishes, the dependence of people with ID and conflicting wishes. Several qualities were important for respecting autonomy: attention to information needs, connecting, recognising end‐of‐life care needs, giving space to show wishes and preferences, and discussing dilemmas. Conclusions If caregivers and relatives embrace autonomy as a relational construct, attained through an open, active and reflective attitude, and have more access to knowledge about communication and how to identify end‐of‐life care needs, this could lead to improved respect for the ID persons' autonomy at the end of life. We discuss the view that a relational concept of autonomy is useful for describing respect for autonomy in end‐of‐life care for people with ID, but that more reflection and openness is needed to sufficiently employ relationships and regard autonomy as a product of joint work.

  March 19, 2013   doi: 10.1111/jir.12023   open full text
• The analysis of challenging relations: influences on interactive behaviour of staff towards clients with intellectual disabilities.
  A. P. A. M. Willems, P. J. C. M. Embregts, A. M. T. Bosman, A. H. C. Hendriks.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 11, 2013
  Background Relationships between support staff and clients with intellectual disability (ID) are important for quality of care, especially when dealing with challenging behaviour. Building upon an interpersonal model, this study investigates the influence of client challenging behaviour, staff attitude and staff emotional intelligence on interactive behaviour of one of these relationship partners, being support staff. Method A total of 158 support staff members completed a questionnaire on staff interactive behaviour for 158 clients with ID and challenging behaviour, as well as two questionnaires on staff interpersonal attitude and emotional intelligence. Results Confronted with challenging behaviour as opposed to no challenging behaviour, staff reported less friendly, more assertive control and less support‐seeking interpersonal behaviour. Also, staff used more proactive thinking and more self‐reflection in dealing with challenging behaviour. Staff interpersonal attitude in general, mainly a harsh‐dominant‐resentful attitude, had a significant influence on most staff interactive behaviours towards an individual client with challenging behaviour. The influence of staff emotional intelligence, specifically intrapersonal abilities, on staff interactive behaviour towards an individual client with challenging behaviour was somewhat limited. Conclusions This research supports the necessity for training staff in general interpersonal attitudes towards clients as well as training in intrapersonal emotional intelligence, when confronted with challenging behaviour. Future research should focus more on the bidirectional dynamics of staff and client interactions.

  March 11, 2013   doi: 10.1111/jir.12027   open full text
• The significance of aspects of screening for obstructive sleep apnoea in children with Down syndrome.
  R. J. Stores, G. Stores.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 11, 2013
  Background The sleep problems of children with intellectual disabilities remains a relatively neglected topic in spite of the consistent reports that such problems are common, often severe and persistent with potentially serious consequences for the children and their families. Children with Down syndrome (DS) are a case in point. They often suffer from obstructive sleep apnoea (OSA), early detection of which is recommended because of its potentially adverse effects on development. This study is concerned with aspects of assessment that have been considered important in helping to recognise OSA in children with DS. The relationships between different objective measures, and between these measures and parental reports of their child's sleep and daytime behaviour, were explored. Method Overnight recordings were carried out on a group of children with DS (n = 31) involving video and audio recording, oximetry and activity monitoring during sleep. Parents also completed questionnaires concerning their child's sleep and daytime behaviour. Results Parents' reports of restless sleep and noisy breathing were supported by objective measures of activity during sleep and audio recording respectively. No significant association was found between objective measures of restlessness during sleep and ‘snoring’ (see later for definition), nor were objective measures of restlessness related to reductions in overnight blood oxygen levels. However, the objective measure of snoring was significantly associated with reductions in overnight blood oxygen levels. All three of the objective measures were significantly associated with parental reports of various types of disturbed daytime behaviour. Conclusions The findings have implications for aspects of screening for OSA in children with DS and for the interpretation of the relevance of the results to the children's daytime behaviour.

  March 11, 2013   doi: 10.1111/jir.12033   open full text
• Functional properties of behaviour problems depending on level of intellectual disability.
  K. Medeiros, J. Rojahn, L. L. Moore, D. J. Ingen.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 07, 2013
  Background Behaviour problems are common among individuals with intellectual disabilities (ID) especially in those with more severe forms. The determination of the functional profile of a targeted behaviour has important implications for the design of customised behavioural interventions. Method We investigated the relationship between the level of ID and the functional profile of aggression, stereotypy and self‐injurious behaviour (SIB) using the Questions about Behavioural Function (QABF). Two staff members at two time points completed the QABF for each of 115 adults with varying levels of ID participating in a day training and habilitation programme. Results and conclusions Our results suggest that there is a differential relationship between the functions of behaviour problems and level of ID. While SIB is more often seen by raters to be maintained by escape of social demands and by attaining access to tangible items with the decline of the intellectual level, aggressive and stereotypic behaviours were identified more often as serving multiple functions equally across functioning level.

  March 07, 2013   doi: 10.1111/jir.12025   open full text
• Cognitive behavioural therapy for chronic pain in people with an intellectual disability: a case series using components of the Feeling Better programme.
  S. McManus, M. Treacy, B. E. McGuire.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. February 06, 2013
  Background Cognitive behavioural therapy (CBT) has been shown to be effective in assisting people to cope with chronic pain. However, this approach has not been systematically evaluated with people with an intellectual disability (ID). This pilot study sought to examine the feasibility and clinical utility of CBT for people with an ID, using elements of a manualised CBT pain management programme called Feeling Better. Method Five people with chronic pain who were functioning within the mild range of ID received a modified, individual eight‐session cognitive behavioural intervention aimed at development of pain management skills. The participants' scores on a range of measures (pain management knowledge, pain self‐efficacy, use of pain coping strategies and effectiveness of coping strategies) were compared pre‐intervention, post‐intervention and at 1‐month follow‐up. Results The results indicated that participant scores on pain management knowledge, wellness‐focused coping and effectiveness of coping increased following the intervention. However, these gains were generally not maintained at follow‐up. Conclusion We concluded that CBT has potential utility for pain management in people with an ID, but that it requires a trial of a more intensive and prolonged intervention with the systematic involvement of care givers.

  February 06, 2013   doi: 10.1111/jir.12018   open full text
• Reconstructing the fall: individual, behavioural and contextual factors associated with falls in individuals with intellectual disability.
  S. Cahill, R. J. Stancliffe, L. Clemson, S. Durvasula.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. February 04, 2013
  Background Falls are a significant and recurrent problem for individuals with intellectual disability (ID). There has been little exploration of the fall event from the perspective of the individual who falls or their carers. Research has focused predominantly on personal risk factors, leaving the behavioural and contextual analysis of falls much less understood. This study aimed to identify these additional factors as well as briefly explore the fall experience for individuals and their carers. Method A qualitative design was used incorporating fall reconstructions and ethnographic‐style interviews conducted in the home setting. Nine people with ID and their carers/family member participated: five pairs were living at home and four were in out‐of‐family‐home settings. Interviews were recorded, transcribed verbatim and major themes identified via thematic analysis. Results We identified 17 themes that contributed to falls and fell under the three headings of individual, behavioural or contextual factors. Themes include decreased physical capacity, unsafe behaviours, limited hazard awareness and the impact of others in the home on an individual's fall behaviours. Additionally, families and individuals identified a number of consequences and adaptations which they implemented to alleviate possible fall impact. Conclusions Qualitative interviews, observational methods and carer assistance are valuable in offering insight into understanding the individual, behavioural and contextual factors associated with falls in people with ID. The fall reconstruction technique may be a useful supplement when evaluating intrinsic risk in programmes designed to reduce falls.

  February 04, 2013   doi: 10.1111/jir.12015   open full text
• Temper outbursts in Prader–Willi syndrome: causes, behavioural and emotional sequence and responses by carers.
  P. Tunnicliffe, K. Woodcock, L. Bull, C. Oliver, J. Penhallow.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. February 04, 2013
  Background Temper outbursts are common in Prader–Willi syndrome but rarely described in detail. This study investigated the phenomenology of temper outbursts in terms of antecedents, sequence of behaviours and emotions and intervention strategies used. Method A semi‐structured interview about temper outbursts was conducted with the main carers of seven children (9.5 to 16.7 years) and seven adults (24.7 to 47.10 years) with Prader–Willi syndrome (10 male, 4 female). Reliability and validity of the interview results was established. Results Various setting events increased and reduced the likelihood of temper outbursts. The most common antecedent was a change to routine or expectation. There were marked similarities in the sequence of behaviours and emotions during temper outbursts, with anger rising quickly followed by expressions of remorse and distress at the end of an outburst. Discussion The sequence of behaviours and emotions within outbursts was similar to that described in temper tantrums in typical development. Cognitive and emotional processes are likely to be important in the understanding of temper outbursts with implications for early intervention.

  February 04, 2013   doi: 10.1111/jir.12010   open full text
• Exploring experiences and understandings of pain in adults with intellectual disabilities.
  L. Findlay, A. C. de C. Williams, K. Scior.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. January 28, 2013
  Background People with intellectual disabilities (ID) are at risk that their health problems, many of which cause pain, go unrecognised and untreated. Their understanding and personal experiences of pain have received little research attention. Method Information was collected from 15 adults with ID using semi‐structured interviews about their experiences and understanding of pain. Transcripts were analysed using content analysis. Results Participants described pain using negative meanings and strong imagery, with various causes of pain suggested, but said little about how they coped with pain. Participants varied in whether they reported pains to carers, some choosing to hide the experience. There seemed a general belief that others can tell when someone is in pain. Conclusions Conversations regarding pain with adults with ID are a real challenge; health‐care staff need to think carefully about the questions they ask. Possessing verbal skills cannot be taken as an indication that pain will be communicated.

  January 28, 2013   doi: 10.1111/jir.12020   open full text
• Children's thoughts on the social exclusion of peers with intellectual or learning disabilities.
  E. A. Nowicki, J. Brown, M. Stepien.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. January 28, 2013
  Background Previous research has shown that children with intellectual or learning disabilities are at risk for social exclusion by their peers but little is known of children's views on this topic. In this study, we used concept mapping to investigate elementary school children's thoughts on why they believe their peers with intellectual or learning disabilities are sometimes socially excluded at school. Method Participants were 49 grade five and six children who attended inclusive classrooms. Interviews were digitally recorded and transcribed. We extracted 49 unique statements from the transcribed data, and then invited participants to sort the statements into meaningful categories. Results Sorted data were entered into matrices, which were summed and analysed with multi‐dimensional scaling and cluster analysis. A four‐cluster solution provided the best conceptual fit for the data. Clusters reflected themes on (1) the thoughts and actions of other children; (2) differences in learning ability and resource allocation; (3) affect, physical characteristics and schooling; and (4) negative thoughts and behaviours. Conclusions The overarching reason for social exclusion focused on differences between children with and without disabilities. This study also provided evidence that children are effective, reliable and competent participants in concept mapping. Educational and research implications are discussed.

  January 28, 2013   doi: 10.1111/jir.12019   open full text
• Parent–child problem solving in families of children with or without intellectual disability.
  N. Wieland, S. Green, R. Ellingsen, B. L. Baker.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. January 22, 2013
  Objective To examine differences in child social competence and parent–child interactions involving children with intellectual disability (ID) or typical development (TD) during a Parent–Child Problem‐Solving Task. Design Mothers and their 9‐year‐old children (n = 122) participated in a problem‐solving task in which they discussed and tried to resolve an issue they disagreed about. The interactions were coded on child and mother problem solving and affect behaviours, as well as the dyad's problem resolution. Results Children with ID (n = 35) were rated lower on expression/negotiation skills and higher on resistance to the task than children with TD (n = 87). Mothers in the ID group (vs. TD group) were more likely to direct the conversation. However, there were no group differences on maternal feeling acknowledgement, engagement, warmth or antagonism. The ID dyads were less likely to come to a resolution and to compromise in doing so than the TD dyads. These group differences were not attributable to differences in children's behaviour problems. Conclusions Children with ID and their mothers had more difficulty resolving problems, and this increased difficulty was not explained by greater behaviour problems. Additionally, with the exception of directiveness, mothers of children with ID displayed similar behaviours and affect towards their children during problem solving as mothers of children with TD. Results suggest that the Parent–Child Problem‐Solving Task is a useful way to assess social skills and associated parental behaviours in middle childhood beyond self‐report. Implications for future research and intervention are discussed.

  January 22, 2013   doi: 10.1111/jir.12009   open full text
• Training support staff to modify fluids to appropriate safe consistencies for adults with intellectual disabilities and dysphagia: an efficacy study.
  D. D. Chadwick, J. Stubbs, S. Fovargue, D. Anderson, G. Stacey, S. Tye.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. January 21, 2013
  Background Modifying the consistency of food and drink is a strategy commonly used in the management of dysphagia for people with intellectual disabilities (ID). People with ID often depend on others for the preparation of food and drink and therefore depend on those caregivers achieving the correct consistency to keep them safe and avoid discomfort during mealtimes. Clinical experience and prior research have demonstrated that although training can improve modification, carers often find modification difficult and potentially stressful and recommend additional support for carers. Fluid consistency is often modified through the addition of powdered thickener. This study investigates the efficacy of typical training and use of consistency guides, the Thickness Indicator Model (TIM) tubes, in helping carers to modify fluids accurately. Method A 3 × 3 pre–post experimental design with a control group was employed to compare the observed accuracy of modification across three groups and at three time points (pre‐intervention baseline, immediately post‐training intervention and 3–10 months post‐training). Sixty‐two paid carers who supported people with ID were recruited to participate in the study and each was randomly allocated to one of the three groups: a control group given written guidance only, a group who received typical training and written guidance and a group who received training, written guidance and the TIM tubes. Results & Conclusions Typical training resulted in significantly greater carer accuracy in modifying fluid consistencies when compared with written guidance alone. Use of the TIM tubes also significantly improved accuracy in the modification of drinks compared with the group who modified with the aid of written guidance alone. At 3–10‐month follow‐up only the group who received typical training alongside the TIM tubes were significantly more accurate than the Written Guidance group. Further research is warranted to ascertain the effectiveness of the training and the utility of the TIM tubes in improving accuracy over a longer time scale and in individuals' usual living environments.

  January 21, 2013   doi: 10.1111/jir.12013   open full text
• Age‐specific prevalence of intellectual disability in Finland at the beginning of new millennium – multiple register method.
  H. Westerinen, M. Kaski, L. J. Virta, F. Almqvist, M. Iivanainen.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. January 21, 2013
  Background In the national study of multiple registers in 2000, the average prevalence of intellectual disability (ID) was 0.70%, with marked differences by age group (range 0.38–0.96%) – what are these differences in detail, and can they be understood? Method This study was based on two national health registers and six social benefit registers. Prevalence of ID was calculated by 1‐year age cohorts. Results The multiple register prevalence of ID increased steadily from 0.20% in the first life year to 0.74% (male: 0.90%, female: 0.58%) at 10 years. For boys, the rate fell to 0.71% at 11 years. For both sexes, a steady increase was noted in the distribution up to 40 years (male: 0.84%, female: 0.73%), followed by a sharper increase to the maximum prevalence (male: 1.19% at 48 years, female: 1.05% at 50 years). At the pension age of 66 years, a sudden drop to 0.49% occurred for men and women. Different registers gave very different age distributions. Conclusions By examining the data by 1‐year age cohorts, and by understanding the role of each register, it could be deduced that a proportion of cases in younger age groups is lacking, and a remarkable proportion of elderly ID persons is missing from the pooled data. The findings were more difficult to interpret, if the data were grouped into bigger age groups.

  January 21, 2013   doi: 10.1111/jir.12017   open full text
• The relationship between challenging behaviour and anxiety in adults with intellectual disabilities: a literature review.
  A. C. Pruijssers, B. Meijel, M. Maaskant, W. Nijssen, T. Achterberg.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. January 21, 2013
  Background Anxiety and challenging behaviour (CB) often occur simultaneously in people with intellectual disabilities (ID). Understanding the associations between anxiety and CB may contribute to more accurate diagnoses and management of both anxiety and CB in this population. Aims To examine the relationship between anxiety and CB. Methods A literature review covering the period from January 2000 to January 2012. Results Seven studies about the relationship between psychiatric disorders, including anxiety, and CB were identified. These studies confirm the relationship between anxiety and CB in people with ID, although the precise nature of this relationship remains unclear. Conclusions The study points toward the existence of a moderate association between anxiety and CB. Further research is needed to clarify the complex nature of the association between anxiety and CB.

  January 21, 2013   doi: 10.1111/jir.12012   open full text
• Body mass index of adults with intellectual disability participating in Special Olympics by world region.
  V. A. Temple, J. T. Foley, M. Lloyd.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. January 17, 2013
  Background People with intellectual disability (ID) experience poorer health and have more unmet health needs compared with people without ID, and they are often absent from population health surveillance. The aim of this study was to describe the body mass index (BMI) status of adult Special Olympics participants by world region and gender. Additionally, the general influence of age and gender on overweight/obesity of all participants was explored. Method A total of 11 643 (7150 male and 4493 female) Special Olympics BMI records were available from the Special Olympics International Health Promotion database. BMI was compared by gender and world region. Logistic regression was used to examine whether age and gender were associated with the likelihood of being overweight/obese (BMI ≥ 25.0). Results Overall, 5.5% of the sample was underweight, 36.1% in the normal range, 24.7% overweight and 32.1% obese, and levels of overweight/obesity were very high in North America. Both age and gender were significant predictors of overweight/obesity (odds ratios 1.06 and 0.59, respectively). Conclusions Our findings demonstrate that adult Special Olympics participants have high levels of overweight and obesity; particularly among women and those from North America. It is crucial that those who work with, care for, coach and live with adults with ID who participate in Special Olympics increase efforts to promote healthy weight status.

  January 17, 2013   doi: 10.1111/jir.12011   open full text
• Receiving or believing in family support? Contributors to the life quality of Latino and non‐Latino families of children with intellectual disability.
  S. R. Cohen, S. D. Holloway, I. Domínguez‐Pareto, M. Kuppermann.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. January 16, 2013
  Background Previous studies have identified the role of family support in mitigating the stress of parents caring for a child with intellectual disability. Less is known about families whose members are willing but unable to support each other because of geographical, structural and economic barriers. Our study examined the contribution to family quality of life (FQL) of family support beliefs, actual assistance from family members, as well as the moderating effects of ethnicity and household income. Method We conducted telephone interviews with 84 Latino and 61 non‐Latino mothers. Results Mothers who received more emotional support from partners and other family members reported a higher FQL, controlling for family characteristics. Familism beliefs were also associated with FQL, particularly for Latino mothers. Income was not a significant moderator. Conclusions These findings suggest that some predictors of FQL are partially moderated by ethnicity, while others may be powerful across diverse communities.

  January 16, 2013   doi: 10.1111/jir.12016   open full text
• Relationship between flat foot condition and gait pattern alterations in children with Down syndrome.
  M. Galli, V. Cimolin, M. Pau, P. Costici, G. Albertini.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. January 04, 2013
  Background In patients with Down syndrome (DS) one of the most common abnormalities is flat foot which can interfere significantly with normal daily activities, such as gait. The aim of this study was to quantitatively assess the relationship between the flat foot and the gait alterations in DS children. Method Twenty‐nine patients with DS and 15 non‐affected subjects were assessed using 3D Gait Analysis, using an optoelectronic system, force platforms and video recording. The degree of flat foot was assessed using the arch index and kinematic and kinetic parameters were identified and calculated from 3D Gait Analysis for each study participant. Results Data showed that ankle plantarflexion moment and ankle power during terminal stance were significant to differentiate the patients with and without flat feet: their peak values were significantly lower for the patients with flat foot. In addition, the research for correlation demonstrated that the higher the arch index value, the lower the peak of ankle moment and of the generated ankle power during terminal stance and the minimum of absorbed ankle power. Conclusions Children with flat foot displayed a less functional gait pattern in terms of ankle kinetics than children without flat foot, suggesting that the presence of flat foot may lead to a weaker efficient walking. Then, the increasing flat foot tended to result in lower push‐off ability, leading a less functional walking.

  January 04, 2013   doi: 10.1111/jir.12007   open full text
• The impact on Iranian mothers and fathers who have children with an autism spectrum disorder.
  S. A. Samadi, R. McConkey.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. December 28, 2012
  Background To date, most research with families who have a child with autism spectrum disorder (ASD) has been undertaken in English‐speaking countries. Increased levels of stress allied with poorer health have been commonly reported for mothers, with less attention paid to fathers. This study aimed to document the personal impact on Iranian mothers and fathers and identify the correlates of increased stress and poorer emotional well‐being. Method In all, 103 parents (58 mothers and 45 fathers) from 74 families who had a child with ASD volunteered to take part in the study. Each participant completed through interview, standardised rating scales of parenting stress, emotional well‐being and family functioning as well as rating their child's autistic symptoms, including stereotyped behaviours. Results Mothers had significantly higher scores than fathers on measures of stress and emotional well‐being. Although these variables were highly correlated, binary logistic regression identified that the poorer health was also associated with lower educational levels of the parents, more behavioural problems with the child and fewer autistic symptoms overall. A similar regression analysis of stress scores identified no gender differences but found that lower stress was associated with mothers and fathers who were joint caregivers and when the family lived with relatives. Conclusions Iranian parents experience broadly similar responses to parents in other countries, which suggests that the impact of ASD outweighs any cultural differences that might otherwise be present in parental responses to caring for children. In common with families internationally, these parents are likely to benefit from opportunities to become better informed about ASD and the management of their child at home allied with increased support from families and friends.

  December 28, 2012   doi: 10.1111/jir.12005   open full text
• Screening for cardiovascular disease risk factors at baseline and post intervention among adults with intellectual disabilities in an urbanised Asian society.
  L. E. Wee, G. C‐H. Koh, L. S. Auyong, A. Cheong, T. T. Myo, J. Lin, E. Lim, S. Tan, S. Sundaramurthy, C. W. Koh, P. Ramakrishnan, R. Aariyapillai‐Rajagopal, H. Vaidynathan‐Selvamuthu, K. Ma‐Ma.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. December 28, 2012
  Background Adults with intellectual disabilities (ID) face significant barriers to screening participation. We determined predictors for regular cardiovascular health screening at baseline among adults with ID in Singapore, and evaluated the effectiveness of a 3‐month screening intervention. Methods The study population involved all adults with ID aged ≥40 years receiving services from the Movement for the Intellectually Disabled of Singapore (MINDS), the largest such provider in Singapore. Over 3 months in 2011, adult clients not screened regularly at baseline for hypertension, diabetes and dyslipidaemia were offered free and convenient blood pressure, fasting blood glucose and lipid testing; data on other cardiovascular disease risk factors were also collected. Chi‐square and logistic regression identified predictors of regular screening at baseline. Results Participation was 95.0% (227/239). At baseline, among adults with ID, 61.8% (118/191), 24.8% (52/210) and 18.2% (34/187) had gone for regular hypertension, diabetes and dyslipidaemia screening respectively; post intervention, rates rose to 96.9%, 89.5% and 88.8% respectively. Prevalence of cardiovascular disease risk factors (22.5% with hypertension, 10.6% with diabetes, 34.8% with dyslipidaemia, 10.7% obese and 90.6% lacking regular exercise) was high compared against the general population. While receiving residential services was associated with regular hypertension screening, receiving non‐residential services and being independently mobile were associated with regular participation in fasting blood tests (all P < 0.05). Conclusion Cardiovascular disease risk factors are common among adults with ID and clinicians should proactively screen such populations. Provision of free and convenient screening for cardiovascular disease risk improved screening participation.

  December 28, 2012   doi: 10.1111/jir.12006   open full text
• Nudge, nudge, wink, wink: love, sex and gay men with intellectual disabilities – a helping hand or a human right?
  D. Abbott.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. December 17, 2012
  Background How do human rights help us with the experiences of people with intellectual disabilities (ID) who face discrimination and barriers in their sexual lives? Men with ID who are gay face a whole range of rights violations when it comes to exercising their sexual identity. How can such a seemingly marginalised group draw on rights based claims for better and equal treatment? This paper explores how the power of men's own stories may usefully challenge prevailing social norms and in turn strengthen human rights claims in this area. It also reflects on the challenges posed to such an agenda by current economic difficulties and changes in the organisation of adult social care in the UK. Method The paper draws on empirical research with gay men with ID completed in the UK in 2005 and briefly revisits some key messages from the data. It also considers the wider literature on the power and possibilities of human rights, ‘intimate stories’ and translating human rights into everyday change. Conclusions Gay men with ID tell powerful stories of love, longing and exclusion. Such stories have the capacity to transform wider social attitudes and in turn strengthen the rights claims of this marginalised groups. There are question marks about the possibility of such change in a time of austerity and the broader move in the UK's welfare state from the collective to the individual consumer of services. However, the telling of men's ‘intimate stories’ creates an almost unassailable challenge to current discriminatory practices and norms.

  December 17, 2012   doi: 10.1111/j.1365-2788.2012.01642.x   open full text
• The impact of staff and service user gender on staff responses towards adults with intellectual disabilities who display aggressive behaviour.
  I. Kleinberg, K. Scior.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. November 06, 2012
  Background The impact of staff and service user gender on responses of staff in intellectual disability (ID) services is poorly understood. The present study set out to assess the role of gender in influencing staff emotions, attributions and behavioural intentions in response to aggression displayed by adults with ID. Method A new scale measuring staff behavioural intentions was developed. A two × two (staff gender × service user gender) between subjects design was used to compare the responses of day and residential support staff to physical aggression by a hypothetical service user. In response to a vignette depicting a service user with ID assaulting a member of staff, 160 respondents completed measures of affective responses, causal attributions and behavioural intentions while imagining themselves as the target of the service user's assault. Results Female participants reported feeling more fear/anxiety, more depression/anger and less confident/relaxed than male participants. The longer staff had worked with people with ID, the more likely they were to favour safety‐focused behaviours. More confident female participants were less likely to favour safety‐focused behaviours, but confidence had no effect on male participants' endorsement of these behaviours. Increased confidence in both was associated with lower agreement of safety‐focused behaviours in relation to the female vignette, regardless of participant gender. The more control women believed the service user had over their behaviour, the more likely they were to choose safety‐focused behaviours. Punitive behaviours were favoured more in response to the male rather than the female service user. Punitive behaviours were also favoured more by more junior staff and by participants who expected feeling more depressed/angry in response to the vignettes. Conclusions Both staff and service user gender influenced staff responses to aggression, yet the latter played a smaller role than expected. The role of gender in staff–service user interactions should be the focus of further research and should be considered in service delivery.

  November 06, 2012   doi: 10.1111/j.1365-2788.2012.01640.x   open full text
• Management and quality indicators of diabetes mellitus in people with intellectual disabilities.
  L. Taggart, V. Coates, M. Truesdale‐Kennedy.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 29, 2012
  Background People with intellectual disabilities (ID) are at a higher risk of developing diabetes compared with the non‐intellectually disabled population, as a consequence of genetic syndromes and because this cohort are more exposed to many of the identified risk factors. However, little is known about the management of diabetes in this population. The aim of this study was to examine the demographics, health and the diabetes quality of care indicators used with people with ID in one region of the UK. Methodology This was a quantitative study using a postal survey design. An anonymised questionnaire was posted to all community ID teams and supported living/residential facilities requesting information on the demographics, health and quality of care indicators for people with ID who have diabetes on their caseloads. Results In total 186 questionnaires were returned. Results showed that 125 people with ID had Type 2 diabetes (67%) and 61 people had Type 1 (33%). Significantly more people with Down syndrome and Autistic Spectrum Disorder had Type 1 diabetes. This study found that 6% had glycossylated glucose levels (HbA1c) greater than 9.5% and for 52% the levels were between 6.5% and 9.4%. Individuals reported to have poor glycaemic control were statistically more likely to have Type 1 diabetes and be younger, live with parents or independently and be obese. Results also illustrate that the national standards for good diabetes management were only partially met. Discussion Because of their enhanced predisposition for the development of diabetes this population merits particular attention with regards to screening for the onset of diabetes. The extent to which the quality of diabetes care indicators were achieved was variable but results suggest that for many people the indices were not met, that glycaemic control was poor, that only a quarter were of normal weight, that many were hypertensive and that almost a quarter had no record of their lipid levels. These findings provoke two important questions: first, who should be responsible for promoting diabetes management in this client group and second, how can service provision be tailored to better meet their needs? Greater collaborative working and education is required between ID services, primary healthcare and diabetes clinicians in order to promote the health and meet the quality indicators of diabetes care among this population.

  October 29, 2012   doi: 10.1111/j.1365-2788.2012.01633.x   open full text
• Human rights and intellectual disabilities in an era of ‘choice’.
  R. Fyson, J. Cromby.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 29, 2012
  Background Efforts to uphold and promote the human rights of people with intellectual disabilities (ID) are being affected by the increasing emphasis on ‘choice’ in the delivery of social care services. While rights presume subjects or selves to whom they apply, there is a disconnect between the subjects presumed within human rights frameworks and the variable capacities of a heterogeneous ID population. This disconnect is amplified by choice discourses which characterise current service provision based upon neoliberal ideologies. Method Conceptual assumptions and theoretical positions associated with human rights in relation to people with ID are critically examined. Results The analysis results in an argument that current conceptualisations of personhood in relation to human rights exclude people with ID. The adverse effects of this exclusion are exacerbated within services which emphasise the permissive rights associated with a neoliberal agenda of ‘choice’ over protective rights. Conclusions In order to ensure that the human rights of people with ID are upheld, neoliberal emphases on choice need to be tempered and a more nuanced and inclusive notion of personhood in relation to universal human rights needs to be adopted.

  October 29, 2012   doi: 10.1111/j.1365-2788.2012.01641.x   open full text
• Falls in older persons with intellectual disabilities: fall rate, circumstances and consequences.
  E. Smulders, L. Enkelaar, V. Weerdesteyn, A. C. H. Geurts, H. Schrojenstein Lantman‐de Valk.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 29, 2012
  Background Falling is a common cause of injuries and reduced quality of life. Persons with intellectual disabilities (ID) are at increased risk for falls and related injuries. As the number of elderly persons with ID is growing rapidly, it is imperative to gain insight into the quantity of the problem of falling, the circumstances that precipitate falls and to better understand their aetiology in persons with ID. This is the first study to prospectively investigate fall rate, circumstances and fall consequences in older adults with mild to moderate ID. Method Eighty‐two individuals with mild to moderate ID, 50 years and over [mean age 62.3 (SD = 7.6), 34 male], participated in this study, which was conducted at three service providers for persons with ID in the Netherlands. Falls were registered for 1 year with monthly fall registration calendars to determine the fall rate (mean number of falls per person per year). Information on fall circumstances and consequences was obtained from questionnaires completed by caregivers and study participants after each fall. Results We determined that the fall rate in this sample was 1.00 fall per person per year. Thirty‐seven participants reported at least one fall (range 1–6). Sex and age were not related to falls. Most falls occurred while walking (63.3%), outside (61.7%) and in familiar environments (88.9%). Importantly, 11.5% of falls resulted in severe injuries, approximately half of which were fractures. Conclusion The circumstances and consequences of falls in persons with ID are comparable to those of the general elderly population, but the rate is substantially higher. As such, appropriate fall prevention strategies must be developed for individuals with ID.

  October 29, 2012   doi: 10.1111/j.1365-2788.2012.01643.x   open full text
• A rising tide: the increasing age and psychiatric length of stay for individuals with mild intellectual disabilities.
  D. Patil, P. Keown, J. Scott.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 29, 2012
  Background It is unclear whether the substantial decline in number and duration of admissions for patients with intellectual disability (ID) have occurred uniformly over time with respect to age, gender, severity of disability, legal status and location of treatment. Method A retrospective analysis of NHS (National Health Service) admissions for ID and use of NHS ID beds in England between 1998/9 and 2007/8. Results NHS admissions for ID halved from 37 736 to 18 091, and admissions with a primary diagnosis of ID to beds reduced by 71% from 21 866 to 6420. This reduction was most marked among children with the result that the average age of those admitted increased from 26 years to 36 years. Mean length of stay shortened except for mild ID where it increased from 131 days to 244 days (the median increased from 6 days to 32 days). There was an 18% reduction in the number of patients with ID who were legally detained to NHS facilities but a 170% increase in those to private facilities (from 202 to 545). Conclusions The number of patients with ID admitted to NHS facilities, especially children, has fallen dramatically. There has been a marked shift towards legal detentions to private facilities. The most notable finding was the increased duration of admissions for those with mild ID, possibly indicating that substituting mainstream for specialist services for this group has had negative consequences.

  October 29, 2012   doi: 10.1111/j.1365-2788.2012.01629.x   open full text
• Neuropsychological profile in adults with neurofibromatosis type 1 compared to a control group.
  M.‐J. Descheemaeker, E. Plasschaert, J.‐P. Frijns, E. Legius.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 24, 2012
  Background Neurofibromatosis type 1 (NF1) is a common inherited autosomal dominant condition, characterised by multiple café‐au‐lait macules, axillary and/or inguinal freckling, iris Lisch nodules and tumours of the nervous system such as neurofibromas and optic pathway gliomas. At the same time, NF1 is frequently associated with intellectual disabilities across several neuropsychological domains. Existing neuropsychological data in NF1 adults are limited and sometimes contradictory. Moreover, most studies use a non‐IQ‐controlled norm group for comparison. This study sought to investigate specific neuropsychological characteristics in intellectual abilities unrelated to the global intellectual capacity. Method Twenty NF1 adults and an IQ‐, age‐ and gender‐matched control group completed a comprehensive neuropsychological test battery composed of specific cognitive tests investigating visual‐spatial abilities and memory, auditory memory, selective and sustained attention and executive functioning. A short version of the Wechsler Adult Intelligence Scale – III was also administered to both groups. Results Norm comparison showed that both groups perform poorly on most neuropsychological functions, except for sustained attention. However, comparison with the IQ‐matched control group showed significantly lower scores on visual‐spatial abilities and memory, on auditory working memory and on tests for cognitive flexibility in NF1 adults. Nevertheless, as the significant difference in average estimated IQ score between the NF1 group and the selected control group almost reaches the 5% significance level, further analysis is needed to include IQ as a covariate. Eventually, problems in visual‐spatial skills and auditory long‐term memory seem to be specific NF1‐related deficits, while problems in attention and executive functioning are particularly related to their general lowered intellectual abilities. Conclusion Taking into account that primary visual perception problems could be part of a more general central coherence deficit while interpreting auditory memory problems as possibly related to deficits in language use and comprehension, this idea also fits with the observation of several problems in social information processing and functioning of NF1 persons.

  October 24, 2012   doi: 10.1111/j.1365-2788.2012.01648.x   open full text
• Inhibitory control and adaptive behaviour in children with mild intellectual disability.
  M. Gligorović, N. Buha Ðurović.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 22, 2012
  Background Inhibitory control, as one of the basic mechanisms of executive functions, is extremely important for adaptive behaviour. The relation between inhibitory control and adaptive behaviour is the most obvious in cases of behavioural disorders and psychopathology. Considering the lack of studies on this relation in children with disabilities, the aim of our research is to determine the relation between inhibitory control and adaptive behaviour in children with mild intellectual disability. Method The sample consists of 53 children with mild intellectual disability. Selection criteria were: IQ between 50 and 70, age between 10 and 14, absence of bilingualism, and with no medical history of neurological impairment, genetic and/or emotional problems. Modified Day–Night version of the Stroop task, and Go‐no‐Go Tapping task were used for the assessment of inhibitory control. Data on adaptive behaviour were obtained by applying the first part of AAMR (American Association on Mental Retardation) Adaptive Behaviour Scale‐School, Second Edition (ABS‐S:2). Results Significant relationships were determined between some aspects of inhibitory control and the most of assessed domains of adaptive behaviour. Inhibitory control measures, as a unitary inhibition model, significantly predict results on Independent Functioning, Economic Activity, Speech and Language Development, and Number and Times domains of the ABS‐S:2. Inhibitory control, assessed by second part of the Stroop task, proved to be a significant factor in practical (Independent Functioning) and conceptual (Economic Activity, Speech and Language Development, and Numbers and Time) adaptive skills. The first part of the Stroop task, as a measure of selective attention, proved to be a significant factor in language and numerical demands, along with second one. Inhibitory control through motor responses proved to be a significant factor in independent functioning, economic activities, language and self‐direction skills. Conclusion We can conclude that inhibitory control represents a significant developmental factor of different adaptive behaviour domains in children with mild intellectual disability.

  October 22, 2012   doi: 10.1111/jir.12000   open full text
• Sex offenders with intellectual disabilities and their academic observers: popular methodologies and research interests.
  A. Hollomotz.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 22, 2012
  Background Over the past two decades, disability activists and scholars have developed research paradigms that aim to place (some of the) control over the research process in the hands of disabled people. This paper discusses the appropriateness of applying such paradigms to sex offenders with intellectual disabilities (ID). It exposes to what extent current research about this population is affected by these developments. Methods A content analysis of a sample of 80 articles across 20 academic journals was carried out. This recorded the data collection methods used, to what extent the views of people with ID were represented, subject affiliations of the authors and the subject matter discussed. Results Few studies make sense of the personal accounts of this population. Social scientists have mostly not engaged in this area of research, which results in significant gaps in knowledge. Conclusions We currently know little about the subjectivity of sex offenders with ID. Research that seeks to explore this may enhance our understanding of this population and thus contribute towards the effectiveness of preventative work and risk management.

  October 22, 2012   doi: 10.1111/j.1365-2788.2012.01644.x   open full text
• The impact of Prader–Willi syndrome on the family's quality of life and caregiving, and the unaffected siblings’ psychosocial adjustment.
  M. M. Mazaheri, R. D. Rae‐Seebach, H. E. Preston, M. Schmidt, S. Kountz‐Edwards, N. Field, S. Cassidy, W. Packman.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 12, 2012
  Background Prader–Willi syndrome (PWS), a complex multisystem genetic disorder, is characterised by developmental abnormalities leading to somatic and psychological symptoms. Symptoms of PWS include infantile hypotonia and failure‐to‐thrive, followed by life‐long hyperphagia, developmental delays and moderate‐to‐severe behavioural problems and several physical problems that impact health. This study examined the effects of caring for a child diagnosed with PWS on the mothers and unaffected siblings. We assessed overall family functioning, the mothers’ psychological health, the psychosocial and behavioural functioning of siblings, and the quality of life of siblings. Methods Participants included 12 mothers and 13 siblings of a child with genetically confirmed PWS. Self‐report measures administered to the mothers evaluated overall family functioning (PedsQL – Family Impact Module), the mothers’ psychological health (Brief Symptom Inventory), and the mothers’ perception of the sibling's quality of life (PedsQL – Parent Proxy). Self‐report measures administered to the siblings evaluated their perceived quality of life (PedsQL) and symptoms of post‐traumatic stress disorder (PTSD) (UCLA PTSD Index). Results Families/mothers/siblings with children with PWS showed poorer perceived quality of life compared with general inpatient and outpatient samples of children with complex health conditions. Families/mothers/siblings with children with PWS reported difficulties in family functioning, communication problems, and an increased number of conflicts. They appeared to be experiencing significant behavioural distress symptoms, with higher than average levels of depression and feelings of isolation, anger and worry. Ninety‐two per cent of the siblings indicated moderate‐to‐severe symptoms of PTSD. Compared with normative populations, siblings demonstrated poorer quality of life, with mothers perceiving more significant deficits in the sibling. Conclusion This study reaffirms that PWS affects the entire family system. Mothers and siblings would benefit from psychosocial support due to the multiple challenges of living with and caring for a child/young adult with PWS.

  October 12, 2012   doi: 10.1111/j.1365-2788.2012.01634.x   open full text
• The human degree of care. Professional loving care for people with a mild intellectual disability: an explorative study.
  M. A. Hermsen, P. J. C. M. Embregts, A. H. C. Hendriks, N. Frielink.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 12, 2012
  Background Research has shown that care staff are not always able to offer quality care. Commercialisation and market forces within the care sector are often pointed to as an explanation for this shortcoming. In the present study, insight is gained into the possible connections between the commercialisation of care, on the one hand, and the shrinkage of possibilities and motivation to offer professional loving care, on the other hand, from the perspective of care staff working with people with mild intellectual disabilities. Method Semi‐structured qualitative interviews were conducted with 28 care staff working with people with mild intellectual disabilities. Scientific research methods were combined with normative ethical reflection to examine the internal morals of the care staff. Results According to participating care staff, an affiliation with and recognition of the client form the basis for professional loving care. Care staff recognise that their profession is increasingly being built upon manageability and accountability, and this is making their jobs more difficult. Conclusion We conclude that care staff perceive the precedence given to the smooth running of production processes over investment in direct contact with clients to be a real threat to the quality of care. Concerns about declining motivation and loss of work satisfaction as a result of the commercialisation of care are only partly acknowledged by care staff. While shrinkage of space for professional loving care is recognised, one can hardly speak of declining motivation.

  October 12, 2012   doi: 10.1111/j.1365-2788.2012.01638.x   open full text
• Engagement in retirement: an evaluation of the effect of Active Mentoring on engagement of older adults with intellectual disability in mainstream community groups.
  J. P. L. Chng, R. J. Stancliffe, N. J. Wilson, K. Anderson.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 10, 2012
  Background As adults with intellectual disability age, retirement options need to be explored. One option is to attend a mainstream community group for retirees. Support within these groups could come from group members who are trained to act as mentors for the older adults with intellectual disability. This research evaluated a support training programme, Active Mentoring, which combines elements of Active Support and Co‐worker Training. Method Three older women with intellectual disability participated in a non‐concurrent multiple baseline design. Effect size analyses (Percentage of Non‐overlapping Data) were used to evaluate observational data. Results Active Mentoring was effective in increasing most types of engagement in activities, but there was no observed effect for social engagement. Mentor help also increased. Conclusion Active Mentoring was effective in eliciting support from mentors, and in increasing activity engagement of older adults with intellectual disability in mainstream community groups.

  October 10, 2012   doi: 10.1111/j.1365-2788.2012.01625.x   open full text
• Who's Challenging Who? Changing attitudes towards those whose behaviour challenges.
  L. M. Hutchinson, R. P. Hastings, P. H. Hunt, C. L. Bowler, M. E. Banks, V. Totsika.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 10, 2012
  Background Although staff attitudes towards individuals with intellectual disability (ID) whose behaviour challenges may be an important part of a positive support culture, very little research has focused on the development of training specifically designed to change staff attitudes. Positive contact is hypothesised to be an effective way to change attitudes towards stigmatised groups. Methods We designed and developed a half day training package about the experiences of individuals whose behaviour challenges – Who's Challenging Who (WCW). The WCW package was delivered according to a manual by a trainer with ID and a professional without disability. Seventy‐six staff from a variety of organisations participated in one of 10 WCW training sessions and provided data on their attitudes and empathy towards individuals whose behaviour challenges prior to the WCW training and immediately at the end of training. Staff also completed a post‐training evaluation questionnaire. Results A training package was successfully developed collaboratively with individuals whose behaviour challenges, and received very positive evaluations from staff participants. Short‐term positive change was shown for empowerment and similarity attitudes, and staff empathy and self‐efficacy. These outcomes were associated with small to moderate effect sizes. Conclusions Meaningful short‐term positive staff attitude changes were found and the WCW training model was shown to be feasible. More robust research designs are needed for future evaluation. In addition, the function of an attitude change intervention such as WCW within organisations' training strategies requires further development.

  October 10, 2012   doi: 10.1111/j.1365-2788.2012.01630.x   open full text
• Reliability and validity of the Dutch version of the Glasgow Anxiety Scale for people with an Intellectual Disability (GAS‐ID).
  H. Hermans, J. Wieland, N. Jelluma, F. Van der Pas, H. Evenhuis.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. October 10, 2012
  Background In the Netherlands, no self‐report screening questionnaire for anxiety in people with intellectual disabilities (ID) was available yet. Therefore, we have translated the Glasgow Anxiety Scale for people with an Intellectual Disability (GAS‐ID) into Dutch and studied its reliability and validity in adults with borderline, mild or moderate ID. Method Test–retest reliability was studied in 66 participants, convergent validity against the Anxiety sub‐scale of the Hospital, Anxiety and Depression Scale (HADS‐A) in 96, and criterion validity against psychiatric diagnosis in 195 participants. Results Internal consistency was α = 0.86 and test–retest reliability ICC = 0.89 (95% CI: 0.82–0.93). Correlation with the HADS‐A was r = 0.61 (95% CI: 0.47–0.72); sensitivity was 83.9% (95% CI: 72.2–91.2) and specificity was 51.8% (95% CI: 43.6–59.9) using a cut‐off score of 17. Missed diagnoses (false‐negatives) were mostly specific phobias. Of the false‐positives, 38 of 66 participants (58%) had another psychiatric diagnosis. Conclusions The Dutch version of the GAS‐ID is a reliable screening instrument with satisfactory sensitivity, but moderate specificity for anxiety disorders. Although specificity for anxiety disorders is only moderate, high scores appear to be indicative of other psychiatric problems too, justifying referral for psychiatric assessment of false‐positives.

  October 10, 2012   doi: 10.1111/j.1365-2788.2012.01632.x   open full text
• Fractional anisotropy distributions in 2‐ to 6‐year‐old children with autism.
  C. Cascio, M. Gribbin, S. Gouttard, R. G. Smith, M. Jomier, S. Field, M. Graves, H. C. Hazlett, K. Muller, G. Gerig, J. Piven.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 24, 2012
  Background  Increasing evidence suggests that autism is a disorder of distributed neural networks that may exhibit abnormal developmental trajectories. Characterisation of white matter early in the developmental course of the disorder is critical to understanding these aberrant trajectories. Methods  A cross‐sectional study of 2‐ to 6‐year‐old children with autism was conducted using diffusion tensor imaging combined with a novel statistical approach employing fractional anisotropy distributions. Fifty‐eight children aged 18–79 months were imaged: 33 were diagnosed with autism, 8 with general developmental delay, and 17 were typically developing. Fractional anisotropy values within global white matter, cortical lobes and the cerebellum were measured and transformed to random F distributions for each subject. Each distribution of values for a region was summarised by estimating δ, the estimated mean and standard deviation of the approximating F for each distribution. Results  The estimated δ parameter, , was significantly decreased in individuals with autism compared to the combined control group. This was true in all cortical lobes, as well as in the cerebellum, but differences were most robust in the temporal lobe. Predicted developmental trajectories of across the age range in the sample showed patterns that partially distinguished the groups. Exploratory analyses suggested that the variability, rather than the central tendency, component of was the driving force behind these results. Conclusions  While preliminary, our results suggest white matter in young children with autism may be abnormally homogeneous, which may reflect poorly organised or differentiated pathways, particularly in the temporal lobe, which is important for social and emotional cognition.

  September 24, 2012   doi: 10.1111/j.1365-2788.2012.01599.x   open full text
• The effect of parental intellectual disability status on child protection service worker decision making.
  S. N. Proctor, S. T. Azar.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 24, 2012
  Background There is evidence to suggest that parents with an intellectual disability (ID) constitute a higher proportion of child‐protective services (CPS) cases than would be expected based on the prevalence of ID in the general population. Researchers have suggested that the stereotypic assumptions and expectations that CPS workers have about parents with an ID might influence decisions and responses made to such parents. This study examined whether parental ID (having an ID vs. not) had an effect on CPS workers' emotional reactions, attributions and decisions about risk to the child, whether to remove the child and workers' general willingness to help the parent. Method Two hundred and twelve CPS workers read vignettes describing parents who were labelled as either having or not having an ID. Workers responded to the vignettes by making ratings of their emotional reactions, attributions and decisions regarding risk, removal and helping. Results CPS workers made significantly higher ratings of pity, willingness to help and risk for parents with an ID than for parents without an ID. Lower ratings of anger and disgust were found for parents with an ID than for parents without an ID. Parents' intellectual status did not have a direct effect on workers' attributions or removal decisions. Conclusions The results show evidence for the influence of stereotypes regarding parental ID due to its differential effect on CPS workers' emotional reactions and decisions about child risk and their willingness to help.

  September 24, 2012   doi: 10.1111/j.1365-2788.2012.01623.x   open full text
• Caregiving of children with intellectual disabilities in China – an examination of affiliate stigma and the cultural thesis.
  M. Y. L. Chiu, X. Yang, F. H. T. Wong, J. H. Li, J. Li.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 24, 2012
  Background While caregivers of children with intellectual disabilities are burdened in every part of the world, it is suspected that particular contexts may make the situation worse. There is little literature on caregivers in China, where familial and clan responsibility rather than individual effort is emphasised, and where communal support, while treasured, is often lacking. Method A total of 211 caregivers in two cities, one with and the other without randomised design, participated in a survey study that assessed affiliated stigma, loss of face, anxiety, mental health and empowerment. Results A proportion of 60.6% of participants were found to be conspicuous cases with mental disturbance of a level which required further professional attention. Participants with better resource appeared to have coped better, enjoying lower psychological distress, lower anxiety and a higher level of personal empowerment. Multiple regression analysis revealed that mental health is related to the affective dimension of affiliated stigma, loss of face and anxiety level. This was found to account for more than half the variance (55%). Discussion The subjective burden of care occurs not in isolation but in a cultural field. Chinese caregiving is characterised by a lack of formal support, and such cultural concerns as loss of face and strong affiliated stigma. This socio‐political context makes caregiving all the more challenging. The situation has to be addressed by both practitioners and policy makers if family caregiving is to be valued and made sustainable.

  September 24, 2012   doi: 10.1111/j.1365-2788.2012.01624.x   open full text
• Quantitative 3D evaluation of step ascent and descent in individuals with Down syndrome – analysis of a daily challenging task.
  M. Galli, V. Cimolin, D. Ferrario, P. Patti, G. Heaney, R. Freedland, G. Albertini, W. T. Brown.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 24, 2012
  Background Step ascent and descent can perturb stability increasing the incidence of falls, especially in older individuals with functional limitations and intellectual disabilities, such as those with Down syndrome (DS). The aim of this study was to investigate the biomechanics and motor coordination of step ascent and descent in adults with DS and compare them with a group of healthy individuals, considering movement kinematics and kinetics. Method Fourteen adults with DS and 12 similarly aged adults without DS who were free of known motor problems were quantitatively assessed during ascending and descending a step using an optoelectronic system (BTS SMART‐D), force platforms and video recording. Kinematic and kinetic parameters were identified and calculated for each study participant and comparisons were made between the DS and a control group (CG). Results Despite similar age ranges, subjects in the DS group performed the step ascent and descent movements slower, with longer duration and with a more accentuated range of motion of the trunk and of the ankle joint than those in the CG. Additionally, the double stance phase on the step was substantially longer in the DS group when represented as a percentage of the entire stepping sequence (ascent, double stance on the step and descent). In terms of kinetics, ground force platform data revealed that the DS subjects showed higher instability in the medio‐lateral direction during double support phase than similarly aged CG subjects and cannot be attributed to age‐associated changes in stability. Conclusions These findings help to elucidate the complex biomechanical strategy of people with DS during a step ascent and descent movement task and may have a major role in the multidimensional evaluation and tailored management for them.

  September 24, 2012   doi: 10.1111/j.1365-2788.2012.01627.x   open full text
• Psychiatrists' knowledge, training and attitudes regarding the care of individuals with intellectual disability.
  S. Werner, M. Stawski, Y. Polakiewicz, I. Levav.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 14, 2012
  Background  Psychiatrists are responsible for providing proper care for people with intellectual disability who have psychiatric disorders. This study examined psychiatrists' perceptions of their own training, knowledge and therapeutic skills, as well as their attitudes towards this population. Methods  Questionnaires were distributed to 679 psychiatrists working within the public sector in Israel. Results  Completed questionnaires were returned from 256 psychiatrists (38% response rate). Most (90%) participants reported having had limited training in the diagnosis and treatment of people with intellectual disabilities, while between 34% and 72% reported having inadequate knowledge in specific areas. Conclusion  The findings of limited training and self‐perceived inadequate knowledge are at least partially explained by the service model, wherein people with intellectual disabilities are cared for by general mental health services. The identified inadequacies could be overcome through the implementation of a model in which specially trained psychiatrists are deployed within generic services.

  September 14, 2012   doi: 10.1111/j.1365-2788.2012.01604.x   open full text
• ‘If and when?’: the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying.
  M. Wiese, A. Dew, R. J. Stancliffe, G. Howarth, S. Balandin.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 14, 2012
  Background  The aim of this study was to explore the way in which community living staff engaged with people with intellectual disability (ID) about dying and death. Method  Guided by grounded theory methodology, focus groups and individual interviews were conducted with staff who had either no experience with client death, experience of a client sudden death, or a client death experience which was pre‐dated by a period of end‐of‐life care. Results  While in principle, staff unanimously supported the belief that people with ID should know about dying, there was limited in‐practice engagement with clients about the topic. Engagement varied according to staff experience, client capacity to understand and the nature of the ‘opportunity’ to engage. Four ‘opportunities’ were identified: ‘when family die’, ‘incidental opportunities’, ‘when clients live with someone who is dying’ and ‘when a client is dying’. Despite limited engagement by staff, people with ID are regularly exposed to dying and death. Conclusions  People with ID have a fundamental right to know about dying and death. Sophisticated staff skills are required to ensure that people with ID can meaningfully engage with end‐of‐life issues as opportunities arise.

  September 14, 2012   doi: 10.1111/j.1365-2788.2012.01593.x   open full text
• Individual support planning: perceptions and expectations of people with intellectual disabilities in the Netherlands.
  M. A. Herps, W. H. E. Buntinx, L. M. G. Curfs.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 14, 2012
  Background  According to Dutch jurisdiction, individual support plans (ISP) should register the mutual agreements between a person with intellectual disabilities (ID) and a professional service organisation with respect to the support that will be provided. In planning for support, active involvement of both parties is necessary. The current study focuses on the perceptions and experiences of Dutch persons with ID with respect to their involvement in their ISP. Method  Data were gathered through semi‐structured interviews with 61 people with mild to moderate ID. Participants were recruited in 23 Dutch service provider organisations. A systematic qualitative analysis was performed on the interview transcripts. Results  Although persons with ID are present at their ISP meeting, active client involvement in developing, executing and evaluating the ISP is not common practice. Issues of accessibility and lack of control over the process and content of ISP hamper effective involvement of people with ID. Conclusions  The study raises questions concerning ISP practices in the Netherlands. The question needs to be addressed as to how to facilitate active involvement of people with ID in planning for support. The results further suggest that support organisations perceive an ISP rather as a formal document to comply with bureaucratic rules than as an instrument of empowerment to enhance control of persons with ID over their own lives.

  September 14, 2012   doi: 10.1111/j.1365-2788.2012.01598.x   open full text
• Is body mass index a useful measure of excess body fatness in adolescents and young adults with Down syndrome?
  L. G. Bandini, R. K. Fleming, R. Scampini, J. Gleason, A. Must.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 14, 2012
  Background  To determine the validity of body mass index (BMI) to identify excess fatness in youth with Down syndrome (DS). Methods  Using the Centers for Disease Control and Prevention (CDC) growth reference, we defined overweight (≥85th percentile) and obesity (≥95th percentile) based on participants' age‐ and sex‐specific BMI z‐scores, calculated from measured height and weight. Percentage body fat was measured by dual‐energy X‐ray absorptiometry. We determined sensitivity, specificity, positive predictive value, negative predictive value and efficiency of BMI percentiles to identify excess adiposity relative to elevated percentage body fat cut‐offs developed from the Pediatric Rosetta Body Composition project in 32 youth (20 boys/12 girls), ages 13–21 years with Down syndrome. Results  For adolescents with Down syndrome using the cut‐off points of 95th percentile for BMI (obesity), sensitivity and specificity were 71% and 96% respectively. Positive predictive value was 83% and negative predictive value was 92%. Overall efficiency was 91%. Sensitivity and specificity for BMI cut‐offs above the 85th percentile (overweight) were 100% and 60% respectively. The positive predictive value was 41% and negative predictive value was 100%. Overall efficiency was 69%. Conclusion  On the whole, the obesity (≥95th percentile) cut‐off performs better than the overweight cut‐off (85th–94th percentile) in identifying elevated fatness in youth with DS.

  September 14, 2012   doi: 10.1111/j.1365-2788.2012.01605.x   open full text
• Patient and provider views on the use of medical services by women with intellectual disabilities.
  J. Wilkinson, D. Dreyfus, D. Bowen, B. Bokhour.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 14, 2012
  Background  People with intellectual disabilities (ID) receive primary care in community‐based practices and are encouraged to participate in the physician–patient relationship. However, the nature of this participation is not known. Methods  Qualitative data were analysed to obtain perspectives from patients and providers regarding clinic visits. Patient participants were recruited from community organisations, while physician participants were recruited from emails and phone calls to local and regional practices and a national and regional list serve. Analysis methods derived from grounded theory were used. Results  Twenty‐seven women with ID and 22 family physicians were interviewed. Themes important to both groups included time, how the support worker should be used in the encounter and the nature of the physician–patient relationship. Patients expressed frustration at how little time they spent with their physician, and wished that physicians would speak directly to them instead of to their support worker. Physicians felt that patients with ID took too much time, and said that they preferred communicating with the support worker. The interviews also revealed unconscious biases about people with ID. Conclusions  Patient participation is encouraged for people with ID, but is limited because of both physician and patient factors. Greater awareness of these factors may improve care for patients with ID.

  September 14, 2012   doi: 10.1111/j.1365-2788.2012.01606.x   open full text
• Ageing with an intellectual disability: the impact of personal resources on well‐being.
  B. A. Lehmann, A. E. R. Bos, M. Rijken, M. Cardol, G.‐J. Y. Peters, G. Kok, L. M. G. Curfs.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 14, 2012
  Background  The population of ageing people with mild and moderate intellectual disabilities (ID) is growing rapidly. This study examines how personal resources (physical health, mental health and social networks) impact the well‐being of ageing people with ID. Methods  Longitudinal survey data on 667 people with a mild or moderate ID were acquired via interviews in 2006 and 2010. Indicators of personal resources (physical health, mental health and social networks) were assessed, as were indicators of well‐being (satisfaction with life, happiness and loneliness). Additionally, data on background characteristics and autonomy were gathered. Results  The results show that age is positively related to decreased mobility and auditory disabilities and negatively related to independent living, autonomy in how one spends one's leisure time and autonomy in decision‐making. Longitudinal analyses demonstrated that, with the exception of health that deteriorated, and social satisfaction that improved, almost all variables remained stable over the 4‐year period. Further, good physical health in 2006 predicted happiness in 2010. Conclusion  Despite the fact that age is associated with poorer physical and mental health and a smaller social network, this study showed that older people with ID have relatively high levels of well‐being. Findings are discussed in the light of coping with ageing and impact of life events.

  September 14, 2012   doi: 10.1111/j.1365-2788.2012.01607.x   open full text
• Therapy service use among individuals with fragile X syndrome: findings from a US parent survey.
  G. E. Martin, K. K. Ausderau, M. Raspa, E. Bishop, U. Mallya, D. B. Bailey Jr.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 14, 2012
  Background  Fragile X syndrome (FXS) is known to be associated with a range of developmental challenges, yet the occurrence and intensity of therapy services along with associated factors have not been determined. Method  In a US national survey, caregivers provided information regarding the therapy services received by their sons (n = 1013) and daughters (n = 283) with FXS (from birth to 63 years; mean = 15.6 years, SD = 10.6). Caregivers reported (1) type, (2) amount, (3) location, and (4) overall satisfaction with services. Associations with other child variables and family income were also examined. Results  Key findings included that 72% of males and 47% of females were currently receiving at least one type of therapy service; the most common services for both males and females were speech–language therapy (ST) and occupational therapy (OT). Overall, males were more likely to receive therapy services as well as a greater number of services than females. Autism status was significantly associated with both males and females receiving ST and males receiving OT and behaviour management therapy. Therapies were provided in a variety of locations, and parents were generally satisfied with the amount and quality of therapy services. Age‐related declines were evident in the use of services for both males and females, with very few individuals receiving any therapy services after 20 years of age. Conclusions  This study provides a baseline description of the current state of therapy services for children with FXS, laying a foundation for future research and recommendations for service provision and policy.

  September 14, 2012   doi: 10.1111/j.1365-2788.2012.01608.x   open full text
• Early identification of autism in fragile X syndrome: a review.
  L. M. McCary, J. E. Roberts.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 14, 2012
  Fragile X syndrome (FXS) is the leading genetic cause of autism, accounting for approximately 5% of autism cases with as many as 50% of individuals with FXS meeting DSM‐IV‐TR criteria for autistic disorder. Both FXS and idiopathic autism (IA) are attributed to genetic causes; however, FXS is an identified single gene disorder whereas autism is a complex disorder with multiple potential causes, some of which have been identified. Studies in IA have focused on the prospective longitudinal examination of infant siblings of children with autism as a target group due to their high risk of developing the disorder. We propose that this same model be applied to the study of infants with FXS. There is a lack of research focusing on the early development of autism within FXS and debate in the literature regarding how to best conceptualise this co‐morbidity or whether it should be considered a co‐morbid condition at all. Studying the emergence and stability of autism in infants with FXS has multiple benefits such as clarifying the underlying mechanisms of the development of autism in FXS and solidifying similarities and differences between co‐morbid FXS with autism and IA. Infant research in both IA and FXS are discussed as well as conclusions and implications for practice and future research.

  September 14, 2012   doi: 10.1111/j.1365-2788.2012.01609.x   open full text
• Delayed visual orienting responses in children with developmental and/or intellectual disabilities.
  F. H. Boot, J. J. M. Pel, M. P. Vermaak, J. van der Steen, H. M. Evenhuis.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 14, 2012
  Background  Assessment of higher visual processing functions mostly requires active cooperation of participants, which is problematic in children with intellectual disabilities (ID). To circumvent this, we applied remote eye tracking to quantify (ab)normal visual orienting responses in children with ID in terms of reaction times to visual stimuli. Methods  We presented visual stimuli (cartoon, coherent form, and coherent motion) to 127 children (2–14 years) with developmental and/or ID (risk group) and simultaneously measured their orienting ocular motor responses. Reaction times to fixation (RTF) in the risk group were compared with RTF values of an age‐matched control group. Results  Overall, in 72% of the children in the risk group, RTF values to cartoon were delayed, in 47% to form, and in 38% to motion. The presence of delayed reaction times was highest in the group of children >4 years with ID. Conclusion  Our data show that a majority of children with developmental and/or ID have delayed visual orienting responses. This suggests that this group has increased risk for higher visual processing dysfunctions. Future studies are planned to correlate abnormal orienting responses to type of brain damage and to dissociate the responses from ocular motor disorders.

  September 14, 2012   doi: 10.1111/j.1365-2788.2012.01610.x   open full text
• Musical learning in children and adults with Williams syndrome.
  M. Lense, E. Dykens.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 14, 2012
  Background  There is recent interest in using music making as an empirically supported intervention for various neurodevelopmental disorders due to music's engagement of perceptual–motor mapping processes. However, little is known about music learning in populations with developmental disabilities. Williams syndrome (WS) is a neurodevelopmental genetic disorder whose characteristic auditory strengths and visual–spatial weaknesses map onto the processes used to learn to play a musical instrument. Methods  We identified correlates of novel musical instrument learning in WS by teaching 46 children and adults (7–49 years) with WS to play the Appalachian dulcimer. Results  Obtained dulcimer skill was associated with prior musical abilities (r = 0.634, P < 0.001) and visual–motor integration abilities (r = 0.487, P = 0.001), but not age, gender, IQ, handedness, auditory sensitivities or musical interest/emotionality. Use of auditory learning strategies, but not visual or instructional strategies, predicted greater dulcimer skill beyond individual musical and visual–motor integration abilities (β = 0.285, sr2 = 0.06, P = 0.019). Conclusions  These findings map onto behavioural and emerging neural evidence for greater auditory–motor mapping processes in WS. Results suggest that explicit awareness of task‐specific learning approaches is important when learning a new skill. Implications for using music with populations with syndrome‐specific strengths and weakness will be discussed.

  September 14, 2012   doi: 10.1111/j.1365-2788.2012.01611.x   open full text
• Obesity and overweight in intellectual and non‐intellectually disabled children.
  E. Slevin, M. Truesdale‐Kennedy, R. McConkey, B. Livingstone, P. Fleming.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. September 07, 2012
  Background Few studies have compared overweight and obesity in intellectually disabled (ID) and non‐intellectually disabled (N‐ID) children. This research compared the prevalence of overweight and obesity between a sample of 218 ID and 229 N‐ID school pupils in Northern Ireland (NI). Comparison of the physical activity and dietary behaviour of the two groups of school pupils were also undertaken. Methods Each pupil completed (assisted if required) a food intake and physical activity questionnaire. Following this body mass index (BMI) and waist circumference were measured and recorded. Results Significantly more ID pupils (72, 33%) were overweight/obese compared with 55 (24%) of the N‐ID pupils in accordance with their BMI. ID pupils also had significantly higher waist circumferences. Over a quarter of foods consumed by the pupils were fatty and sugary foods and close to 30% of these foods were eaten by the ID children. Pupils spent most of their time engaging in low levels of activity such as reading, watching TV, on games consoles and listening to music. Pupils with an ID spent fewer hours on moderate and high levels of activities compared with those children with N‐ID. Conclusions Results of this study found higher levels of overweight and obesity in this sample than in international published research. Additionally significantly higher numbers of ID pupils were overweight and obese indicating the need for future research and public health to focus on this issue.

  September 07, 2012   doi: 10.1111/j.1365-2788.2012.01615.x   open full text
• Reliability and utility of the Behaviour Support Plan Quality Evaluation tool (BSP‐QEII) for auditing and quality development in services for adults with intellectual disability and challenging behaviour.
  K. McVilly, L. Webber, M. Paris, G. Sharp.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 29, 2012
  Background  Having an objective means of evaluating the quality of behaviour support plans (BSPs) could assist service providers and statutory authorities to monitor and improve the quality of support provided to people with intellectual disability (ID) who exhibit challenging behaviour. The Behaviour Support Plan Quality Evaluation Guide II (BSP‐QEII) was developed to monitor and assess BSPs prepared by teachers to support children with disability in the school system. This study investigated the application of the BSP‐QEII to the assessment of BSPs for adults with ID in community support services. Method  The inter‐rater reliability of the BSP‐QEII was assessed. The utility of the BPS‐QEII was then investigated with reference to a time series study of matched pairs of BSPs, developed for the same clients over a period of approximately 3 years. Differences in plan quality measured across a number of service and systemic variables were also investigated. Results  The BSP‐QEII was found to have good inter‐rater reliability and good utility for audit purposes. It was able to discriminate changes in plan quality over time. Differences in plan quality were also evident across different service types, where specialist staff had or had not been involved, and in some instances where a statutory format for the plan had or had not been used. There were no differences between plans developed by government and community sector agencies, nor were there any regional differences across the jurisdiction. Conclusions  The BSP‐QEII could usefully be adopted as an audit tool for measuring the quality of BSPs for adults with ID. In addition to being used for research and administrative auditing, the principles underpinning the BSP‐QEII could also be useful to guide policy and educational activities for staff in community based services for adults with ID.

  July 29, 2012   doi: 10.1111/j.1365-2788.2012.01603.x   open full text
• The content validity of the Behaviour Support Plan Quality Evaluation tool (BSP‐QEII) and its potential application in accommodation and day‐support services for adults with intellectual disability.
  K. McVilly, L. Webber, G. Sharp, M. Paris.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 29, 2012
  Background  The quality of support provided to people with disability who show challenging behaviour could be influenced by the quality of the behaviour support plans (BSPs) on which staff rely for direction. This study investigated the content validity of the Behaviour Support Plan Quality Evaluation tool (BSP‐QEII), originally developed to guide the development of BSPs for children in school settings, and evaluated its application for use in accommodation and day‐support services for adults with intellectual disability. Method  A three‐round Delphi study involving a purposive sample of experienced behaviour support practitioners (n = 30) was conducted over an 8‐week period. The analyses included deductive content analysis and descriptive statistics. Results  The 12 quality domains of the BSP‐QEII were affirmed as valid for application in adult accommodation and day‐support service settings. Two additional quality domains were suggested, relating to the provision of detailed background on the client and the need for plans to reflect contemporary service philosophy. Furthermore, the results suggest that some issues previously identified in the literature as being important for inclusion in BSPs might not currently be a priority for practitioners. These included: the importance of specifying replacement or alternative behaviours to be taught, descriptions of teaching strategies to be used, reinforcers, and the specification of objective goals against which to evaluate the success of the intervention programme. Conclusions  The BSP‐QEII provides a potentially useful framework to guide and evaluate the development of BSPs in services for adults with intellectual disability. Further research is warranted to investigate why practitioners are potentially giving greater attention to some areas of intervention practice than others, even where research has demonstrated these others areas of practice could be important to achieving quality outcomes.

  July 29, 2012   doi: 10.1111/j.1365-2788.2012.01602.x   open full text
• Stigma, public awareness about intellectual disability and attitudes to inclusion among different ethnic groups.
  K. Scior, J. Addai‐Davis, M. Kenyon, J. C. Sheridan.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 29, 2012
  Background  Attitudes to the inclusion of people with intellectual disabilities (IDs) have been studied extensively, yet evidence on public awareness about ID and stigma is limited. The relationship between attitudes, knowledge and stigma associated with ID is poorly understood. The present study examined these factors and the relationships between them in the context of a multicultural society.Method  UK residents of working age (n = 1002) were presented with a diagnostically unlabelled vignette of someone with a mild ID. They were asked to label the difficulties presented and to complete measures of social distance and attitudes to the inclusion of people with IDs.Results  While attitudes to the inclusion of people with IDs were relatively positive overall, social contact was viewed with ambivalence. Inclusion attitudes and social distance were only moderately correlated. Across the whole sample 28% recognised typical symptoms of mild ID. Recognition of ID was associated with lower stigma and more positive attitudes than attribution of the difficulties presented to other causes. White Westerners showed increased knowledge, lower stigma and favoured inclusion more than participants from ethnic minorities. Among the latter group, Asians showed lower stigma and attitudes more in line with inclusion policies than participants of Black African/Caribbean backgrounds. Once a host of contextual factors were considered jointly, only contact was consistently associated with the variables measured.Conclusions  Stigma associated with ID is of concern across all ethnic groups, although it appears to be increased among the public from ethnic minorities. Given that contact and awareness are associated with reduced stigma, they should be considered as prime foci for efforts to tackle ID stigma. The current findings serve as baseline for attempts to increase public awareness and tackle stigma.

  July 29, 2012   doi: 10.1111/j.1365-2788.2012.01597.x   open full text
• Family carers' perspectives on post‐school transition of young people with intellectual disabilities with special reference to ethnicity.
  R. Raghavan, N. Pawson, N. Small.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 23, 2012
  Background  School leavers with intellectual disabilities (ID) often face difficulties in making a smooth transition from school to college, employment or more broadly to adult life. The transition phase is traumatic for the young person with ID and their families as it often results in the loss of friendships, relationships and social networks.Method  The aim of this study was to explore the family carers' views and experiences on transition from school to college or to adult life with special reference to ethnicity. Forty‐three families (consisting of 16 White British, 24 Pakistani, 2 Bangladeshi and one Black African) were interviewed twice using a semi‐structured interview schedule. The carers were interviewed twice, Time 1 (T1) and Time 2 (T2), T2 being a year later to observe any changes during transition.Results  The findings indicate that although transition planning occurred it was relatively later in the young person's school life. Parents were often confused about the process and had limited information about future options for their son or daughter. All family carers regardless of ethnicity, reported lack of information about services and expressed a sense of being excluded. South Asian families experienced more problems related to language, information about services, culture and religion.Conclusions  The majority of families lacked knowledge and awareness of formal services and the transition process. Socio‐economic status, high levels of unemployment and caring for a child with a disability accounted for similar family experiences, regardless of ethnic background. The three key areas relevant for ethnicity are interdependence, religion and assumptions by service providers.

  July 23, 2012   doi: 10.1111/j.1365-2788.2012.01588.x   open full text
• CYP1A2 polymorphisms in slow melatonin metabolisers: a possible relationship with autism spectrum disorder?
  W. Braam, H. Keijzer, H. Struijker Boudier, R. Didden, M. Smits, L. Curfs.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 23, 2012
  Background  In some of our patients with intellectual disabilities (ID) and sleep problems, the initial good response to melatonin disappeared within a few weeks after starting treatment. In these patients melatonin levels at noon were extremely high (>50 pg/ml). We hypothesise that the disappearing effectiveness is associated with slow metabolisation of melatonin because of a single nucleotide polymorphism (SNP) of CYP1A2.Method  In this pilot study we analysed DNA extracted from saliva samples of 15 consecutive patients with disappearing effectiveness of melatonin. Saliva was collected at noon and 4 pm for measuring melatonin levels.Results  In all patients' salivary melatonin levels at noon were >50 or melatonin half time was >5 h. A SNP was found in eight of 15 patients. The allele *1C was found in two patients and in six patients the *1F allele was found.Conclusions  Of 15 patients with disappearing effectiveness of melatonin, seven were diagnosed with autism spectrum disorder, and in four of them a SNP was found. The other eight patients were known with a genetic syndrome. In six of them behaviour was considered to be autistic‐type and in three of them a SNP was found. This finding may give a new direction for research into the genetic background of autism.

  July 23, 2012   doi: 10.1111/j.1365-2788.2012.01595.x   open full text
• Physical education teachers' attitudes towards children with intellectual disability: the impact of time in service, gender, and previous acquaintance.
  D. Özer, S. Nalbant, E. Aǧlamıș, F. Baran, P. Kaya Samut, A. Aktop, Y. Hutzler.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 23, 2012
  Background  This study investigated attitudes towards teaching students with intellectual disability (ID) within a representative sample of secondary school physical education (PE) teachers, and to determine the effects of age, gender, teaching experience, and having acquaintance with ID and students with ID on their attitudes.Methods  Participants were 729 secondary school PE teachers who worked in 81 major cities of Turkey. The Teachers Attitudes towards Children with Intellectual Disability Scale was administered.Results  The statistical analysis revealed that there was no significant effect on factors and total attitudes scores of gender and having students with ID. Significant effects on factors and total attitudes score were found in teaching experiences and having acquaintance with ID.Conclusions  It is encouraged to maintain and further develop in‐service education programmes of adapted physical activity for PE teachers.

  July 23, 2012   doi: 10.1111/j.1365-2788.2012.01596.x   open full text
• General practitioners' views on perceived and actual gains, benefits and barriers associated with the implementation of an Australian health assessment for people with intellectual disability.
  N. G. Lennox, C. E. Brolan, J. Dean, R. S. Ware, F. M. Boyle, M. Taylor Gomez, K. van Dooren, C. Bain.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 10, 2012
  Background  Health assessments for people with intellectual disability have been implemented in the UK, New Zealand and Australia, and have led to improved health outcomes. The Comprehensive Health Assessment Program (CHAP) has been shown to improve the health of people with intellectual disability. Similar to other health assessments, it is designed to address healthcare needs, many of which are often overlooked in this population, through better communication between the general practitioner (GP), support worker and the person with intellectual disability. This study investigates GP views of the perceived and actual benefits, gains and barriers associated with its uptake and use in practice.Method  As part of a larger randomised controlled trial of the CHAP, 46 GPs in Queensland, Australia, completed two telephone interviews that included open‐ended questions about their perceptions of the health assessment. The GPs were enrolled in the intervention arm of the trial. Interviews took place at commencement and conclusion of the trial to gain the views of GPs as they experienced using the CHAP. Thematic analysis was used to identify key themes and patterns from the GP responses.Results  Four themes were identified: better healthcare and uncertain benefits captured GP perceptions of the potential gains associated with use of the CHAP, while two further themes, organisational barriers in the general practice setting and engagement across the healthcare triad highlighted strengths and barriers related to implementation. Anticipated concerns about time raised by GPs at commencement of the trial were borne out in practice, but concerns about communication and cooperation of people with disabilities were not. Matters associated with support worker engagement emerged as an area of concern.Conclusions  GPs perceive the CHAP as a structured and comprehensive approach to the detection of medical problems as well as an aid in overcoming communication barriers between the doctor and the person with disability. Our findings suggest that some GPs may find it difficult to predict the benefits of using health assessments such as the CHAP. Achieving optimal uptake is likely to require attention at policy and systems levels to address: GP time constraints in providing healthcare to this population; enhancement of support worker training and organisational structures to encourage comprehensive health assessment and follow‐up activities; and GP awareness of the improved health outcomes shown to derive from the use of comprehensive health assessments.

  July 10, 2012   doi: 10.1111/j.1365-2788.2012.01586.x   open full text
• Health care in adults with Down syndrome: a longitudinal cohort study.
  K. M. Jensen, M. M. Davis.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 10, 2012
  Background  Individuals with Down syndrome increasingly survive into adulthood, yet little is known about their healthcare patterns as adults. Our study sought to characterise patterns of health care among adults with Down syndrome based on whether they had fully transitioned to adult‐oriented providers by their inception in this cohort.Methods  In this retrospective observational cohort study, healthcare utilisation and annualised patient charges were evaluated in patients with Down syndrome aged 18–45 years who received care in a single academic health centre from 2000 to 2008. Comparisons were made based on patients' provider mix (only adult‐focused or ‘mixed’ child‐ and adult‐focused providers).Results  The cohort included 205 patients with median index age = 28 years; 52% of these adult patients had incompletely transitioned to adult providers and received components of their care from child‐focused providers. A higher proportion of these ‘mixed’ patients were seen exclusively by subspecialty providers (mixed = 81%, adult = 46%, P < 0.001), suggesting a need for higher intensity specialised services. Patients in the mixed provider group incurred higher annualised charges in analyses adjusted for age, mortality, total annualised encounters, and number of subspecialty disciplines accessed. These differences were most pronounced when stratified by whether patients were hospitalised during the study period (e.g. difference in adjusted means between mixed versus adult provider groups: $571 without hospitalisation, $19 061 with hospitalisation).Conclusions  In this unique longitudinal cohort of over 200 adults aged 18–45 years with Down syndrome, over half demonstrated incomplete transition to adult care. Persistent use of child‐focused care, often with a subspecialty emphasis, has implications for healthcare charges. Future studies must identify reasons for distinct care patterns, examine their relationship with clinical outcomes, and evaluate which provider types deliver the highest quality care for adults with Down syndrome and a wide variety of comorbidities.

  July 10, 2012   doi: 10.1111/j.1365-2788.2012.01589.x   open full text
• Psychometric properties of the ‘Spanish Burnout Inventory’ among employees working with people with intellectual disability.
  P. R. Gil‐Monte, H. Figueiredo‐Ferraz.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 10, 2012
  Background  Burnout has been recognised as an important stress‐related problem for employees working with people with intellectual disability. Researchers have been troubled by some of the psychometric limitations of the questionnaires developed to evaluate burnout. This study was designed to assess the psychometric properties of the Spanish Burnout Inventory.Method  The sample consisted of 697 Spanish employees working in intellectual disability services. The instrument is composed of 20 items distributed in four dimensions: Enthusiasm towards the job, Psychological exhaustion, Indolence and Guilt. The psychometric properties were examined through the following analyses: confirmatory factor analysis and reliability. To assess the factorial validity of the Spanish Burnout Inventory, four alternative models were tested.Results  The four‐factor model obtained an adequate data fit for the sample. The four sub‐scales exhibited high reliability, with Cronbach alphas exceeding the critical value of 0.70.Conclusions  This study provides evidence showing the adequate psychometric properties of an alternative burnout measure that could facilitate the diagnosis of individuals with burnout. It recommends taking feelings of guilt into consideration in interventions designed to improve staff burnout.

  July 10, 2012   doi: 10.1111/j.1365-2788.2012.01591.x   open full text
• A longitudinal study of the intra‐country variations in the provision of residential care for adult persons with an intellectual disability.
  R. McConkey, F. Kelly, S. Craig, H. Mannan.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 10, 2012
  Background  Small‐scale community accommodation is the preferred alternative internationally to the institutional and congregated services that previously dominated residential care for persons with intellectual disability. The strategies required for changing to new service models are not well researched.Method  The National Intellectual Disability Database in Ireland provided the data to explore the changes in provision that occurred over a 10‐year period and the extent of the intra‐country variation across eight administrative areas for health services. Data were extracted for 2 years, 1999 and 2009, for over 7000 adult persons resident in either congregated or community‐based accommodation. Comparative indicators were calculated for the eight areas as well as nationally. In addition, over 4000 persons living in congregated settings were tracked over the 10 years to ascertain relocations as well as gathering information on the numbers of people newly admitted to each type of accommodation.Results  Marked variations across the eight areas were found in the overall numbers of people in residential accommodation, the proportion of persons living in congregated settings and the extent of changes in the numbers of people in each type of accommodation. Moreover, fewer than 15% of people had relocated nationally from congregated settings over the 10‐year period and the number of new admissions to this form of provision remained high in certain areas.Conclusions  The implementation of new forms of provision was not uniform across Ireland and possible reasons are proposed. Among the wider lessons internationally is the need for robust systems to monitor service provision nationally and locally if equity of access is to be achieved.

  July 10, 2012   doi: 10.1111/j.1365-2788.2012.01592.x   open full text
• The functional fitness capacity of adults with Down syndrome in South Africa.
  E. Terblanche, P.‐H. Boer.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. July 10, 2012
  Background  It is well established that there is a relationship between physical inactivity and increased risk for diseases of lifestyle. Persons with Down syndrome (DS) are especially at risk because of physical and health impairments, as well as perceived and real barriers to participation in exercise. The purpose of the study was to establish the functional fitness capacity and predictors of performance of DS adults.Methods  Data were collected at various intellectual disability centres and private homes in seven provinces of South Africa. Three hundred and seventy‐one DS individuals (199 men and 172 women) from 18 to 66 years were tested for balance, flexibility, coordination, muscular strength and endurance, aerobic capacity and functional ability. Data were categorised according to gender and age groups (18–25, 26–35, 36–45, and >45 years). Multiple regression analysis was performed to determine the relationship between the functional task and physical test items.Results  Down syndrome men performed significantly better on all but two tests compared with the women (P < 0.05). DS women performed better on the sit‐and‐reach flexibility item and the chair stand test; however, differences were not statistically significant from the men. Significant differences across age groups were observed for nine of the 13 functional fitness tests (P < 0.05). Muscular strength items, especially leg strength, significantly predicted functional performance in DS men and women. Aerobic capacity only predicted functional performance in DS men and sit‐and‐reach flexibility and dynamic balance only in DS women.Conclusions  Findings of this study provide important information on the functional capacity of DS adults and show which physical attributes contribute to functional performance. Consequently appropriate training programmes can be tailored for this population whom is known to have poor functional fitness.

  July 10, 2012   doi: 10.1111/j.1365-2788.2012.01594.x   open full text
• A thematic review of scientific and family interests in Canavan Disease: where are the developmentalists?
  S. Glicksman, C. Borgen, M. Blackstein, A. Gordon, I. Hanon, D. Kusin, B. Leibowitz, J. Halle.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 08, 2012
  Background  Canavan Disease is a degenerative neurological condition resulting in a spongy deterioration of the brain. Much research has been conducted by the medical community regarding this condition, but little research can be found in the psychological literature.Method  A review of the scientific literature related to Canavan Disease using the Psychinfo and PubMed databases was conducted covering a 5‐year span from 2006 through 2011. Concurrently, a review of parent initiated topics found on the most popular Canavan Disease Internet discussion board was conducted for comparison purposes.Results  When comparing the topics discussed and information sought among parents with the themes noted in the extant scientific literature, researchers found an exceedingly small overlap between the two communities of interest. In the scientific literature, published research on Canavan Disease focused on three areas: the biochemistry of Canavan Disease, diagnosis and genetic counselling, and clinical therapeutic approaches in Canavan Disease. Of the 42 unique topics raised on a popular Internet discussion board, however, only three (7%) fell into the category of diagnosis and genetic counselling, none (0%) fell into the category of the biochemistry of Canavan Disease, and four fell into the category of clinical therapeutic approaches in Canavan Disease (10%). Of the four posts addressing clinical therapeutic approaches to Canavan Disease, only one post truly overlapped with the topics addressed by the scientific community. Worded differently, while these three categories comprise 100% of the extant scientific literature regarding Canavan Disease, they comprise only 17% of the parent‐raised topics. The remaining 83% of parent‐raised topics addressed concerns not currently being focusing upon by the scientific community, namely, non‐medical practical issues, information regarding specific characteristics of Canavan Disease, non‐medical developmental and quality of life issues, and day‐to‐day developmental and medical concerns.Conclusion  By comparing the extant literature on Canavan Disease with the topics of interest raised by parents and caregivers, it seems clear that there is a significant ‘underlap’ of topics raised by these two communities of interest, one that may reflect a lack of sensitivity on the part of the scientific community to meet the needs of this population of knowledge seekers. It is the suggestion of these authors that developmental psychology may be the appropriate scientific field within which to address this need and fill this gap in the current literature.

  June 08, 2012   doi: 10.1111/j.1365-2788.2012.01576.x   open full text
• On the differential nature of induced and incidental echolalia in autism.
  D. Grossi, R. Marcone, T. Cinquegrana, M. Gallucci.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 08, 2012
  Background  Echolalia is a verbal disorder, defined as ‘a meaningless repetition of the words of others’. It is pathological, automatic and non‐intentional behaviour, often observed in a variety of neurological and psychiatric disorders and above all in autism. We assume that echolalia is an imitative behaviour that is due to difficulties in inhibiting automatic repetition as seen in patients with frontal lobe damage. Our aim is to study the occurrence of echolalia under experimental conditions to investigate the nature of the phenomenon and its relationship with the severity of autism.Methods  Eighteen participants with autism from 17 to 36 years old were recruited; they were administrated the Vineland scale, the Observational Rating Scale of Basic Functions and the Echolalia Questionnaire. In the Echolalia Questionnaire, questions were directly addressed to the autistic subject (induced procedure) or to the subject's caregiver while the subject was free to do what he wanted (incidental procedure). The data were analysed by multivariate regressions and Pearson's correlations.Results  The results showed that echolalia occurred in both experimental situations; the mean value was significantly higher in the induced procedure, but results did not support the correlation with Vineland's score in the incidental procedure. It is likely that the two situations activated different processes. In particular, echolalia was statistically higher in the induced procedure as compared with the incidental one only for subjects with low score on Vineland, but in the incidental procedure, the presence of echolalia appeared to be uninfluenced by the functional capacity of subjects.Conclusions  The two experimental conditions require different monitoring systems to control this verbal behaviour. The echolalic phenomenon is an expression of dependence on the environment and may occur in a situation in which the autistic person is participating in a communicative act and, lacking inhibitory control, repeats the other's communication rather than selecting an answer. The deficit in inhibitory control in this situation does not seem to be present in subjects with higher efficiency. Incidental echolalia reflects the inability of the subject to filter out background environmental noise, which occasionally results in environmental dependency.

  June 08, 2012   doi: 10.1111/j.1365-2788.2012.01579.x   open full text
• Are adults with intellectual disabilities socially excluded? An exploratory study in Taiwan.
  Y‐T. Wang.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 06, 2012
  Background  The aim of this exploratory study is to examine to what extent adults with intellectual disabilities (ID) in Taiwan are socially excluded and to identify the factors that are potentially associated with such social exclusion.Methods  The research method of this study is secondary data analysis, using descriptive and χ2 statistical analysis. Two data sets, from the 2003 and 2006 surveys entitled ‘Survey of Living Situation for People with Disabilities in Taiwan’, were used (n = 572; n = 618). In addition, ‘independent living/living within the community’ (as opposed to residing in an institution), ‘employment’ and ‘household economic situation/residing in a low‐income household’ were social exclusion indicators in this study.Results  The results revealed that in the 2003 (2006) survey, 81.9% (79.6%) of the subjects fell into at least one category of social exclusion, 11.3% (12.3%) fell into two or more categories and 0.2% (1.1%) fell into all three categories. Moreover, older women with ID, with no spouse or partner, lower educational levels and greater severity of the disability had a significantly greater likelihood of being subjected to more categories of social exclusion.Conclusions  The finding that the proportion of adults with ID and no social exclusion has risen from 18.1% in 2003 to 20.4% in 2006 represents an encouraging trend. However, there has been a marked increase in the proportion of the subjects with more categories of social exclusion, particularly with regard to those who have to endure all three categories, from 0.2% in 2003, to 1.1% in 2006. This implies that, at the time of the last survey, there was still considerable room for improvement in the social inclusion of adults with ID in Taiwan.

  June 06, 2012   doi: 10.1111/j.1365-2788.2012.01574.x   open full text
• Promoting social inclusion through Unified Sports for youth with intellectual disabilities: a five‐nation study.
  R. McConkey, S. Dowling, D. Hassan, S. Menke.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. June 06, 2012
  Background  Although the promotion of social inclusion through sports has received increased attention with other disadvantaged groups, this is not the case for children and adults with intellectual disability who experience marked social isolation. The study evaluated the outcomes from one sports programme with particular reference to the processes that were perceived to enhance social inclusion.Method  The Youth Unified Sports programme of Special Olympics combines players with intellectual disabilities (called athletes) and those without intellectual disabilities (called partners) of similar skill level in the same sports teams for training and competition. Alongside the development of sporting skills, the programme offers athletes a platform to socialise with peers and to take part in the life of their community. Unified football and basketball teams from five countries – Germany, Hungary, Poland, Serbia and Ukraine – participated. Individual and group interviews were held with athletes, partners, coaches, parents and community leaders: totalling around 40 informants per country.Results  Qualitative data analysis identified four thematic processes that were perceived by informants across all countries and the two sports to facilitate social inclusion of athletes. These were: (1) the personal development of athletes and partners; (2) the creation of inclusive and equal bonds; (3) the promotion of positive perceptions of athletes; and (4) building alliances within local communities.Conclusions  Unified Sports does provide a vehicle for promoting the social inclusion of people with intellectual disabilities that is theoretically credible in terms of social capital scholarship and which contains lessons for advancing social inclusion in other contexts. Nonetheless, certain limitations are identified that require further consideration to enhance athletes' social inclusion in the wider community.

  June 06, 2012   doi: 10.1111/j.1365-2788.2012.01587.x   open full text
• Psychometric evaluation of a Dutch version of the Mini PAS‐ADD for assessing psychiatric disorders in adults with different levels of intellectual disability.
  R. Janssen, B. Maes.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. March 28, 2012
  Background  People with intellectual disabilities (ID) have an increased vulnerability to develop psychiatric problems. Moreover, the early recognition and the accurate diagnosis of psychiatric disorders in the population of persons with ID are challenging. Method  A Dutch version of the Mini PAS‐ADD, which is a screening instrument for identification of mental health problems in people with ID, was evaluated in terms of internal consistency, interinformant reliability, item grouping and criterion validity based on a large‐scale random sample (n = 377) and a clinical sample (n = 99) of adults with ID. Results  The Dutch version of the Mini PAS‐ADD showed moderate internal consistency, and moderate concordance among informants. Both aspects of the reliability were comparable for different levels of ID. A factor analysis largely confirmed the scale structure. Concurrent validity with the Reiss Screen for Maladaptive Behavior was high for the Depression, Psychosis and Autism scale. The outcome of the criterion‐validity analysis indicated high specificity. The sensitivity for specific psychiatric disorders by the corresponding scales was moderate, but the general sensitivity for the presence of psychopathology on the basis of any of the scales was satisfying. Conclusions  The present research reconfirmed the use of the Mini PAS‐ADD as a primary screening device for the identification of mental health problems among people with ID.

  March 28, 2012   doi: 10.1111/j.1365-2788.2012.01544.x   open full text
• Determinants of adult functional outcome in adolescents receiving special educational assistance.
  H. R. McGeown, E. C. Johnstone, J. McKirdy, D. C. Owens, A. C. Stanfield.
  Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR. February 28, 2012
  Background  This study investigates the role of IQ, autistic traits and challenging behaviours in affecting adult outcomes among adolescents who receive special educational assistance. Methods  A total of 58 participants were recruited from an ongoing longitudinal study. All received assessments of IQ, behavioural patterns (using the Childhood Behaviour Checklist – CBCL) and autistic traits (using the Social Communication Questionnaire – SCQ) during adolescence and were followed up 6 years later (at a mean age of 22 years) using the World Health Organization Disability Assessment Schedule II (WHO‐DAS II) to assess functional outcome. Results  A significant positive relationship was found between CBCL score and WHO‐DAS II score (β = 0.511, P = 0.001). IQ score showed a negative relationship with total WHO‐DAS II score (β = −0.247, P = 0.04). SCQ score was not found to significantly influence total WHO‐DAS II score (β = −0.028, P = 0.84). Conclusions  Although the role of global intellectual ability is important, these results stress the highly predictive value of adolescent behaviours on functional outcomes in adult life among young adults receiving special educational assistance.

  February 28, 2012   doi: 10.1111/j.1365-2788.2011.01533.x   open full text