Providing timely palliative and end-of-life care (PC/EOL) information to parents of children with a serious illness is a national health care priority. The goals of this study were to determine feasibility, acceptability, and parent responses related to a PC/EOL communication intervention, titled "Communication Plan: Early through End of Life (COMPLETE)" to parents of children with a brain tumor. The study was a 2-site prospective, single-group pilot study targeting parents’ stress and coping outcomes. The sample included 13 parents of 11 children (ie, 11 families). During the first 6 months postdiagnosis, we evaluated parent outcomes at 4 time points (baseline and 3 post-sessions). Our findings included significant decline in decision regret (P = .0089); strong, significantly increased hope (P ≤ .0001); and significantly decreased uncertainty (P = .04). Over time, more than half of the parents (61.5%) preferred to receive information about their child’s current condition and PC/EOL options. Our findings provide evidence to suggest that the COMPLETE intervention is feasible and acceptable and produces promising effects on 3 parent outcomes (ie, decision regret, hope, and uncertainty) in parents of children with a brain tumor. Further research is indicated to evaluate COMPLETE with a larger sample of parents of children with cancer and with a control group.
Many survivors of childhood acute lymphoblastic leukemia (ALL) develop neurocognitive deficits that compromise academic functioning, especially in the presence of sociodemographic risk factors. The extent to which these risk factors coexist for Latino ALL survivors is not well described, but with shifts in U.S. demographics and improved survival in ALL, culturally competent interventions are needed. The Achieving Best Cognitive Successes after Cancer service was designed and implemented by a team representing nursing, medicine, psychology, and social work. Service components include neurocognitve assessment and individualized intervention for treatment-related risks and improving academic success for school-aged ALL survivors. Interventions are child-focused and parent-directed, recognizing that parents are major sources of support and advocates for their children within school systems. The service was designed to be culturally appropriate for the predominantly Latino patient population at our center, based on (1) linguistic competency of children and parents; (2) multicultural and ecological considerations for urban, low socioeconomic status, and migrant populations; (3) literacy barriers; and (4) contextual factors. This report describes methodological considerations and practice implications relevant to the design and implementation of similar culturally competent services for Latino pediatric cancer survivors.
Children with cancer are a subset of patients with central lines with distinct risk factors for infection including periods of prolonged neutropenia and compromised mucous membrane integrity. This article relates the implementation of principles of practice-based evidence to identify interventions in addition to best practice maintenance care bundles to reduce central line–associated bloodstream infections involving viridans group streptococci and coagulase-negative staphylococci on an inpatient pediatric oncology unit. Review of individual events combined with review of current clinical practice guided the development of structured protocols emphasizing routine oral care and general supportive cares. Key principles of the protocols emphasized a 1-2-3 mnemonic and included daily bathing, twice daily oral care, and out-of-bed activity 3 times daily. Poisson regression identified a significant main effect for time period for central line–associated bloodstream infection rates involving both viridans group streptococci and coagulase-negative staphylococci. Significant differences were present between the preintervention baseline and implementation of the supportive care protocols. Project outcomes demonstrate the added value of using principles of practice-based evidence to guide the development of interventions to improve clinical care when evidence-based sources are limited.
Research has shown that self-esteem and hopefulness are positively related among female childhood cancer survivors (CCS) and contribute to their health-related quality of life (HRQOL). HRQOL remains a significant outcome of treatment for CCS. This study examined the relationships among self-esteem, hopefulness, and HRQOL in young adult female CCS to inform the development of evidence-based practice guidelines for pediatric oncology nursing practice. An online survey was conducted with a sample of young adult female CCS from 58 treatment centers across the United States at 4 time points: at baseline and at 6 weeks, 3 months, and 6 months after initial measurement time. The relationships between self-esteem, hopefulness, and HRQOL were statistically significant (Time 1, P = .05; Times 2, 3, and 4, P = .01) across all measurement times. These findings identify hopefulness and self-esteem as determinants of HRQOL and suggest that caring practices among pediatric oncology nurses that support psychosocial adjustment through promoting self-esteem and hopefulness have the potential to support HRQOL among young adult female CCS. These outcomes support the development of evidence-based practice guidelines to influence HRQOL outcomes among these survivors.
Therapy combining dinutuximab with granulocyte macrophage colony stimulating factor, interleukin 2, and isotretinoin has significant side effects; however, these complications are generally predictable and can be managed proactively.
A diagnosis of childhood cancer is a life-changing event for the entire family. Parents must not only deal with the cancer diagnosis but also acquire new knowledge and skills to care safely for their child at home. Best practices for delivery of patient/family education after a new diagnosis of childhood cancer are currently unknown. The purpose of this systematic review was to evaluate the existing body of evidence to determine the current state of knowledge regarding the delivery of education to newly diagnosed pediatric oncology patients and families. Eighty-three articles regarding educational methods, content, influencing factors, and interventions for newly diagnosed pediatric patients with cancer or other chronic illnesses were systematically identified, summarized, and appraised according to the Grading of Recommendations Assessment, Development, and Evaluation criteria. Based on the evidence, 10 recommendations for practice were identified. These recommendations address delivery methods, content, influencing factors, and educational interventions for parents and siblings. Transferring these recommendations into practice may enhance the quality of education delivered by health care providers and received by patients and families following a new diagnosis of childhood cancer.
There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children’s Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.
Patient/family education is an important component of nursing practice and is essential to the care of children newly diagnosed with cancer. Practices regarding patient/family education in Children’s Oncology Group (COG) treatment centers have not been well described. We used an Internet-based survey to determine current patient/family educational practices at COG institutions; participation rate was 90.5% (201/222). Patient/family education was delivered primarily by an individual (rather than a team) at 43% of institutions. Advanced practice nurses had primary responsibility for providing education at 32% of institutions. "Fever" was the most frequently reported topic considered mandatory for inclusion in education for newly diagnosed patients. More than half of institutions reported using checklists and/or end-of-shift reports to facilitate health care team communication regarding patient/family education, and 77% reported using the "teach-back" method of assessing readiness for discharge. Thirty-seven percent of institutions reported delays in hospital discharge secondary to the need for additional teaching. An understanding of current practices related to patient/family education is the first step in establishing effective interventions to improve and standardize educational practices in pediatric oncology.
Parents/caregivers require specialized education in order to care for their child with a newly diagnosed cancer. Currently, no evidence-based guidelines exist to identify content essential for inclusion in patient/family education prior to a child’s initial discharge home; this study used Delphi methodology to obtain multidisciplinary consensus regarding essential content amongst pediatric oncology experts from the Children’s Oncology Group. Three questionnaire rounds were employed to identify essential content, evaluate the importance of the educational topics identified, and gain expert consensus regarding the final ranking of topics identified and whether or not each topic was considered mandatory for inclusion in education for newly diagnosed patients. Disease-specific topics were also identified for patients with leukemia, solid tumors, and central nervous system tumors. The results of this study provide, for the first time, multidisciplinary expert consensus regarding key content essential for inclusion in discharge education for newly diagnosed pediatric oncology patients.
Lymphatic malformation (LM) is a benign congenital childhood growth that presents primarily at birth, with the remainder becoming evident by age 2 years. LM can cause devastating complications such as respiratory failure, dyspnea, dysphagia, organ compression, and nerve compression. Surgery is the preferred treatment option, although resection is not always an option due to the anatomic location of the malformation. Other treatments that have been tried with success include sclerotherapy, radiofrequency ablation, propranolol, and sirolimus. Nurses have an important role in caring for the child with LM, as with any complex disease. Nurses provide care at the bedside, education to the family, case coordination, and psychosocial support. LM is a rare disease in infancy necessitating pediatric nurses to support families through prolonged treatments and potential complications.
Children treated for cancer are exposed to a variety of chemotherapeutic agents with known toxicity to the peripheral nervous system. The side effect of peripheral neuropathy can cause changes in sensation, function, and even cause pain. Although peripheral neuropathy is recognized by pediatric oncology nurses as an important and significant side effect, measuring neuropathy can be quite complex for clinical care and research efforts. With more children surviving a cancer diagnosis today, this issue is increasingly important for childhood cancer survivors. This article has reviewed existing literature examining peripheral neuropathy in childhood cancer survivors with particular interest paid to measurement tools available and needs for future research. It is important for nurses to choose appropriate measures for clinical care and research methods in order to have an impact on patients experiencing this condition.
Sisom is an interactive tool designed to help children communicate their cancer symptoms. Important design issues relevant to other cancer populations remain unexplored. This single-site, descriptive, qualitative study was conducted to linguistically validate Sisom with a group of French-speaking children with cancer, their parents, and health care professionals. The linguistic validation process included 6 steps: (1) forward translation, (2) backward translation, (3) patient testing, (4) production of a Sisom French version, (5) patient testing this version, and (6) production of the final Sisom French prototype. Five health care professionals and 10 children and their parents participated in the study. Health care professionals oversaw the translation process providing clinically meaningful suggestions. Two rounds of patient testing, which included parental participation, resulted in the following themes: (1) comprehension, (2) suggestions for improving the translations, (3) usability, (4) parental engagement, and (5) overall impression. Overall, Sisom was well received by participants who were forthcoming with input and suggestions for improving the French translations. Our proposed methodology may be replicated for the linguistic validation of other e-health tools.
Siblings of a child with a life-threatening disease, such as cancer, have a right to measures that promote their health and welfare. Siblings may find it hard to understand what is happening to the sick child with cancer and why he or she reacts as he or she does. The aim of the study was to explore sibling supporters’ thoughts about the experiences they had in providing support for siblings with a brother or a sister with a life-threatening disease such as cancer. All the 12 sibling supporters currently working in Sweden participated in a qualitative, descriptive study from which 5 categories emerged, showing that the sibling supporters supported siblings from diagnosis until possible death. They enabled siblings who were in the same situation to meet each other and arranged activities suited to their ages, as well as offering an encouraging environment. To help the siblings, the sibling supporters found it necessary to interact with both the parents and the ward staff. The sibling supporters felt that their support was important and necessary in helping siblings promote their own health both when the sick child was alive and also after his or her death. The experience of the sibling supporters was that they listened to the siblings’ stories and met them when they were in their crisis. The study confirms that sibling supporters should be a part of the health care team that treat and support the family when a child has cancer.
This study evaluated the potential impact of an online spiritual care educational program on pediatric nurses’ attitudes toward and knowledge of spiritual care and their competence to provide spiritual care to children with cancer at the end of life. It was hypothesized that the intervention would increase nurses’ positive attitudes toward and knowledge of spiritual care and increase nurses’ level of perceived spiritual care competence. A positive correlation was expected between change in nurses’ perceived attitudes toward and knowledge of spiritual care and change in nurses’ perceived spiritual care competence. A prospective, longitudinal design was employed, and analyses included one-way repeated-measures analysis of variance, linear regression, and partial correlation. Statistically significant differences were found in nurses’ attitudes toward and knowledge of spiritual care and nurses’ perceived spiritual care competence. There was a positive relationship between change scores in nurses’ attitudes toward and knowledge of spiritual care and nurses’ spiritual care competence. Online spiritual care educational programs may exert a lasting impact on nurses’ attitudes toward and knowledge of spiritual care and their competence to provide spiritual care to children with cancer at the end of life. Additional studies are required to evaluate the direct effects of educational interventions patient outcomes.
Background: The aim of radiotherapy is to provide a cure and/or symptomatic relief for children with cancer. Treatment is delivered on a daily basis, 5 days per week, over the course of 5 to 35 days. Many parents find that leaving their children alone during treatment and exposing them to radiation is a challenging experience. To gain an understanding of parents’ lived experiences, 10 parents were asked to keep a diary while their children underwent radiotherapy. Methods: A descriptive inductive design with a hermeneutic-phenomenological approach was chosen to analyze the diaries. The parents were asked to write down their lived experiences while their children underwent radiotherapy. Daily notes, both short and long, were desirable. Findings: The parents described radiotherapy as a balancing act involving a constant attempt to maintain a balance between coercing and protecting their children in order to improve their children’s chances of survival. Meanwhile, the parents themselves were struggling with their own despair and feelings of powerlessness. While protecting their children, they experienced a sense of hope and felt that they had gained control. Conclusion: Parents’ daily written reflections are important for clinical practice and provide vital knowledge. Parents need support when focusing on coercing and protecting their children and help with information and routines that enable them gain control.
Objectives: Caring for a child with cancer can disrupt family life and financial stability, in addition to affecting the child’s social, emotional, and educational development. Health care providers must consider ways to minimize the negative impact of illness and hospitalization on the child and family. This study evaluates a nationwide initiative to educate and support parents to administer chemotherapy to their child in their home. Method: A questionnaire was circulated to parents participating in a home chemotherapy program from 2009 to 2014 (n = 140), seeking their perspective on the education program, and the benefits and concerns associated with administering home chemotherapy. Data analysis was conducted using a combination of descriptive statistics and content analysis. Results: Questionnaires were received from 108 parents (response rate = 77%). Overall, the program was positively evaluated with 100% of parents (n = 108) reporting that the training met their needs. More than one-third of parents (41%, n = 44) initially felt nervous about home chemotherapy but reported that the education program helped assuage their concerns. Benefits included reduced financial costs, reduced travel time to hospital, less disruption to family life, and less stress for the child and family. No medication errors were reported during the evaluation period. Conclusion: An important feature of the program is the partnership approach, which ensures that parents’ decision to enter the program is informed, appropriate for their situation, and centered on the needs of the child.
The aim of this study was to identify and describe barriers of young adult childhood cancer survivors transitioning to adult health care within 5 years of leaving a pediatric oncology practice. Several barriers have been identified in the literature, but other obstacles as to why this vulnerable population may be avoiding health care are unknown. This is a descriptive pilot study of a convenience sample of childhood cancer survivors, currently 20 to 25 years of age, who were diagnosed at less than 21 years of age. The Transition to Adult Care Survey assessing survivor barriers is an online survey consisting of 15 questions, with a drop-down menu for answers and 2 open-ended questions. The survey was accessible by smartphone or computer. Standard descriptive statistics were used to describe variables of interest. Our population consisted of 48 childhood cancer survivors. Their mean age was 23.21 years. Only 74% reported following through with annual preventive screening, and 57% reported that they consider themselves at risk for further medical problems as a result of their cancer treatment. Lack of knowledge of the importance of health screening may be a potential barrier to consistent follow-up care.
Objective: To study the incidence, risk factors, and treatment of hemorrhagic cystitis secondary to BK-virus reactivation (HC-BKV) after allogeneic hematopoietic stem cell transplantation (allo-HSCT) in the pediatric population. Methods: Case-control study in which all pediatric patients (0-18 years) who underwent allo-HSCT from September 2009 to January 2014 were followed. Results: Twenty-nine patients underwent an allo-HSCT. The median age was 9 years (range = 6 months to 15 years), 61% male. The primary diagnosis was acute lymphoblastic leukemia (72.4%). Six (20.7%) developed HC-BKV. In a multivariate analysis of risk factors, it was observed that the reactivation of BK virus was associated with age more than 10 years (P = .098) and those with positive serology for Epstein-Barr virus (P = .06). Five of the 6 patients with HC-BKV received cidofovir (CDV) at doses of 3 to 5 mg/kg/week. The treatment lasted a median of 3 cycles (range = 2-5). One of the patients (20%) developed nephrotoxicity. Of the 5 patients treated with CDV, 3 (60%) had a complete response, 1 (20%) partial response, and 1 (20%) no response. Conclusion: We conclude that HC-BKV is a frequent complication after allo-HSCT. CDV therapy can be effective but controlled clinical trials are needed.
Adverse neurologic complications (NC) occur commonly in pediatric patients with hematologic malignancies both pre- and post–allogeneic hematopoietic cell transplant (HCT). Given this known risk, we previously obtained pre-HCT brain magnetic resonance imaging (MRI) to document baseline abnormalities but utility of this and findings are not well described. This study aimed to (a) determine the prevalence and risk factors for abnormal brain MRI and (b) determine prevalence and risk factors for development of new NC during and 2 years post-HCT. Retrospective chart review included 102 patients with hematologic malignancies who underwent allogeneic HCT between 2000 and 2009 at University of California San Francisco (UCSF) Children’s Hospital and included standard HCT data, brain MRI reports, and NC and symptoms pre- and post-HCT. Forty-three percent of patients had abnormal findings on pre-MRI, most commonly nonspecific white matter changes. Neurologic symptoms pre-HCT was the only significant risk factor for abnormal MRI. Eleven patients (11%) developed post-HCT NC. Non-Caucasian race was the only significant risk factor for new NC. Although abnormal pre-HCT brain MRI is common, these findings are not predictive of subsequent NC post-HCT. Therefore routine surveillance may not be informative for that purpose, particularly when general anesthesia is required, which can have detrimental neurocognitive effects. Etiology of NC in pediatric HCT is likely multifactorial and may include genetic and ethnic predispositions.
The primary nursing care model optimizes relationship-based care. Despite using a primary nursing model on a pediatric hematology/oncology inpatient unit, it was hypothesized patients and nurses were dissatisfied with the structure of primary care teams and inconsistency of primary assignments. The purpose of this study was to evaluate patient/family and nurse perceptions of our current care model through assessing gaps in its operationalization and satisfaction. This study used a descriptive cross-sectional design featuring patient/family and nurse surveys. Of the 59 patient/family respondents, 93.2% prefer to have a primary nurse care for them and 85% are satisfied with how often they are assigned a primary care team member. Similarly, 63% of the 57 nurse respondents are satisfied with the current implementation of our primary nursing model and 61% state the model reflects good continuity of care. Yet 80.7% of nurses believe safety would improve for a patient whose nurse works shifts consecutively even if not a primary nurse. Overall, patients, families, and nurses value care continuity and meaningful nurse–patient relationships, which is fundamental to primary nursing.
An increased intensity of inpatient treatment, hospital-based routines, and separation from the familiar home environment may collectively increase the burden of the pediatric cancer experience. This study explored children and adolescents’ perceived sources of bother related to hospitalization using two questions: (1) What bothered you the most about the hospital or hospital environment? and (2) What do you think could improve the hospital or hospital environment? Fifty children and adolescents (mean age 12.6 years) responded to these questions during each shift of a 3-day/3-night data collection period. Responses were analyzed using content analysis and chi-square analyses. Themes related to sources of bother included (1) "nothing/don’t know," (2) "treatment and its consequences," (3) "isolation and loneliness," (4) "imposed bother," (5) "negative environment," and (6) "staff behaviors." Themes related to improving the hospital environment included (1) "nothing/don’t know," (2) "normalizing activities," (3) "quality of the hospital environment," (4) "decrease burden of cancer and its treatment," and (5) "patient care issues." Participants’ responses to these questions provide a foundation for actionable change to alleviate the burden associated with hospitalization.
Purpose: Symptom assessment is an emergent area of research in pediatric cancer. Our team previously reported on the development of a questionnaire to be completed by parents to determine symptom prevalence and bother. This exploratory study examined parental nonprobed, free-text comments about their child’s treatment-related symptoms reported on the questionnaire. Method: Participants were parents of children aged 4 to 18 years who had been diagnosed with cancer at least 2 months prior to enrolment and had received intravenous chemotherapy within the past month at 1 of 5 pediatric cancer centers. The questionnaire consisted of 69 or 71 items (based on child’s age) addressing physical and psychological sequelae. Each symptom query was accompanied by a blank space in which parents could comment on their response. Comments were analyzed guided by content analysis methodology. Results: Five major themes emerged: parental attributions for the symptoms experienced in their child; coping patterns and communication styles within the family; evidence of anticipatory, procedural, and other anxieties; interruption of daily life; and changes in the child’s physical appearance. Conclusions: These exploratory findings provide context to parental perception of their child’s treatment-related symptoms and may contribute to a better understanding of parental perception of child and the family coping and communicating style. These findings may assist in the development of psychoeducational interventions aimed at promoting open communication styles within the family and reducing child and parent burden during treatment procedures.
Objective: Benefit finding has been described as the identification of positive effects resulting from otherwise stressful experiences. In this mixed methods study, we examined the relations between qualitative themes related to benefit finding and quantitative measures of psychosocial adjustment and coping as reported by maternal caregivers of survivors of pediatric cancer. Methods: Female caregivers of survivors of pediatric cancer (n = 40) completed a qualitative questionnaire about their experiences caring for their child, along with several quantitative measures. Qualitative questionnaires were coded for salient themes, including social support and personal growth. Correlation matrices evaluated associations between qualitative themes and quantitative measures of stress and coping. Results: Identified benefits included social support and personal growth, as well as child-specific benefits. Total benefits reported were significantly positively correlated with availability of emotional resources. Coping methods were also associated, with accepting responsibility associated with fewer identified benefits. Conclusion: Despite the stress of their child’s illness, many female caregivers of survivors of pediatric cancer reported finding benefits associated with their experience. Benefit finding in this sample was associated with better adjustment.
Interpretive phenomenological analysis methodology was used to explore coping strategies used by hospitalized Jordanian adolescents with cancer. In-depth face-to-face interviews were conducted with 10 Jordanian adolescents, aged 13 to18 years, who were receiving chemotherapy for cancer. During treatment, participants were confronted with physical, psychosocial, and emotional distresses resulting from the disease process, the treatment, and its associated side-effects. To cope with the impact of their illness, participants utilized 4 coping strategies: "Strengthening spiritual convictions," "Being optimistic and rebuilding hope," "Enhancing appearance," and "Finding self again." The findings of this study can assist health team members to promote positive psychological care to Arab Muslim adolescents with cancer in a supportive and therapeutic treatment environment.
One of the most common side effects of medical treatment for patients with an oncologic diagnosis is malnutrition. There is limited research that broadly assesses the perceptions of health care providers (HCPs) regarding nutrition support in the pediatric population. The purpose of this study was to describe the perceptions of nutrition support among pediatric oncology and hematopoietic stem cell transplant HCPs. The study used a cross-sectional descriptive design using a 31-item survey. Results of the survey indicated that nurses were more likely to initiate conversations about nutrition support during the first month of diagnosis, while midlevel providers and physicians initiated discussions in response to a change in nutritional status evidenced by decreased oral intake or weight loss. Participants reported resistance by patients and families more often for enteral nutrition compared with parenteral nutrition. Findings suggest a need to develop a more unified service line–based approach for initiating discussions related to nutrition support that incorporate patient and family perceptions.
Background: Human flora are the most common cause of bacteremia in immunocompromised patients. Activities of daily living (ADL), including oral care and daily chlorhexidine gluconate bathing, can lower the risk of infection. Methods: To address ADL compliance in our pediatric oncology and bone marrow transplant patients, we adopted the ADL 1-2-3 initiative: daily chlorhexidine gluconate bath and linen change, at least 2 activities per day, and oral care 3 times per day. Using the Model for Improvement we created a standardized ADL process that involved all providers. Interventions included addressing ADL 1-2-3 compliance during rounds, establishing accountability in care delivery, an oral care order set and algorithm, daily text message reminders, and physician intervention with noncompliant and high-risk patients. Results: With our interventions, we increased our median compliance with the all-or-none ADL 1-2-3 initiative from 25% to 66% in 90 days. We have sustained our median compliance to 75% sixteen months after implementation. The greatest impact on compliance was seen with text message reminders to staff to complete and document the ADL 1-2-3 components, designated roles and responsibilities, and physician discussion with noncompliant and high-risk patients. Discussion: Oral care algorithm and order set, daily text message reminders, and physician intervention with noncompliant and high-risk patients has improved our compliance. Units where compliance with ADL participation is low can benefit from incorporating elements from this ADL 1-2-3 initiative.
Introduction: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings’ advice to health care professionals (HCPs) working with children with cancer and their families. Materials and Methods: In a nationwide Swedish survey of bereaved siblings, 174/240 (73%) participated. Of these, 108 answered an open-ended question about what advice they would give to HCPs working with children with cancer and their families. In this study, responses to this single question were analyzed using content analysis. Results: The most common advice, suggested by 56% of siblings, related to their own support. One third suggested giving better medical information to siblings. Some siblings wanted to be more practically involved in their brother’s/sister’s care and suggested that HCPs should give parents guidance on how to involve siblings. Other common advice related to psychosocial aspects, such as the siblings’ wish for HCPs to mediate hope, yet also realism, and the importance of asking the ill child about what care they wanted. Conclusion: Information, communication, and involvement should be emphasized by HCPs to support siblings’ psychosocial needs in both the health care setting and within the family.
Caregiving stress has been associated with changes in the psychological and physical health of parents of children with cancer, including both partnered and single parents. While parents who indicate "single" on a demographic checklist are typically designated as single parents, a parent can be legally single and still have considerable support caring for an ill child. Correspondingly, an individual can be married/partnered and feel alone when caring for a child with serious illness. In the current study, we report the results from our exploratory analyses of parent self-reports of behavior changes during their child’s treatment. Parents (N = 263) of children diagnosed with cancer were enrolled at 10 cancer centers. Parents reported significant worsening of all their own health behaviors surveyed, including poorer diet and nutrition, decreased physical activity, and less time spent engaged in enjoyable activities 6 to 18 months following their child’s diagnosis. More partnered parents found support from friends increased or stayed the same since their child’s diagnosis, whereas a higher proportion of lone parents reported relationships with friends getting worse. More lone parents reported that the quality of their relationship with the ill child’s siblings had gotten worse since their child’s diagnosis. Spiritual faith increased for all parents.
Caregivers of pediatric oncology patients are expected to understand and adhere to a complex medical plan of care while at home; yet little is known about how to assess and evaluate the caregivers’ abilities to adequately meet these demands. The purpose of this study was to describe the issues and daily challenges faced by caregivers as they transition from hospital to home after their child’s cancer diagnosis. Patients and caregivers received a home visit by an expert pediatric oncology nurse within 72 hours postdischarge after initial diagnosis. The nursing narrative notes from these visits were analyzed using content analysis. Four explanatory themes emerged: (1) "We’re doing okay," (2) "This isn’t going so well," (3) "I could use a little help with this," and (4) "An RN in the house makes you feel safe and know what is correct." These analyses revealed many caregivers achieved mastery of caring for the child at home; however, an overwhelming majority of caregivers expressed questions or concerns to the nurse during the home visit, even those achieving mastery of care. A home visit by an expert pediatric oncology nurse assisted the caregiver in transitioning to caring for the child at home. Such programs should be considered when planning transition programs from hospital to home.
Sickle cell disease (SCD) is an inherited disorder in which sickled red blood cells occlude the small vessels of the body, reducing oxygen delivery to tissues and ultimately negatively affecting many of the body’s major organs. Hydroxyurea has proven beneficial in the treatment of SCD and prevention of disease-related complications. The 2014 guidelines put forth by the National Heart, Lung, and Blood Institute recommend hydroxyurea treatment in infants 9 months and older, children, and adolescents with SCD-SS or SCD-Sβ0 thalassemia regardless of clinical severity. This is a change from the 2002 guidelines in which hydroxyurea was recommended for adolescents and children with SCD-SS or SCD-Sβ0 thalassemia with frequent episodes of pain, a history of acute chest syndrome, severe and symptomatic anemia or other severe vaso-occlusive events. Nurses play a critical role in working with patients and families to provide education, guidance, and support to improve compliance to mitigate the long-term effects of SCD.
Animal-assisted activities (AAA) are increasingly common, yet little is known about practices in pediatric oncology. To address this gap, we surveyed the top 20 pediatric oncology hospitals in the United States in May and June of 2014. Questionnaires were sent via e-mail and generally returned by e-mail or postal mail. Among the 19 responding hospitals, the 18 that offered AAA to pediatric patients formed the basis of our analysis. All sites had written AAA policies. Most programs were restricted to dogs. At 11 hospitals, children with cancer could participate in AAA activities. Outpatient waiting rooms and individual inpatient rooms were the most common locations for AAA with pediatric oncology patients. Safety precautions varied by hospital, but all required hand sanitation after visits and that animals receive an annual health examination, be on a leash or in a carrier, be ≥1 year old, and not be directly from a shelter. Our findings reveal consistencies and variations in practice that may help other hospitals develop their own programs and researchers identify areas of future study.
The majority of children diagnosed with cancer will become long-term survivors; however, many will suffer late effects of treatment, including infertility. Educating patients about potential risk for infertility is important, yet little is known regarding when patients would like to hear this information. The purpose of this study was to assess young adult survivors’ previous experience in receiving education about their risk for infertility and determine their preferences for infertility education at various time points during and after treatment. Only 36% of survivors report receiving education about risk for infertility at diagnosis, 39% at end of therapy, and 72% in long-term follow-up/survivor clinic visits. Survivors consistently identified their oncologist as a preferred educator at each time point. Although almost all participants identified wanting education at diagnosis, this time point alone may not be sufficient. End of therapy and survivorship may be times this message should be repeated and adapted for the survivor’s needs and developmental stage: conversations about the impact of cancer treatment on future fertility should be ongoing.
Telehealth is the use of electronic information and telecommunications technologies to support long-distance health care. It supports quality health care that is accessible, and time- and cost-effective. Telehealth videoconferencing may enhance the care for hemophilia patients who are experiencing a bleed by supporting real-time detailed assessment including appearance, range of motion, and ambulation in addition to the traditional phone methods of verbal description of appearance, pain, and function. The aim of this clinical project was to evaluate the feasibility of using telehealth videoconferencing in children with severe hemophilia in the home setting. Twelve patients with severe hemophilia ages 2to 18 years, who had more than 2 breakthrough bleeds in the past year, and had Internet access with a computer camera were included. The incidence of bleeding was low; however, videoconferencing was effective for 3 patients who completed 4 video appointments. Patients and staff reported that videoconferencing improved communication and satisfaction. Telehealth videoconferencing is a feasible tool for managing bleeding disorders in the home setting.
The purpose of this qualitative study was to explore how childhood cancer survivors experience college life. Five undergraduate students who are childhood cancer survivors, aged 19 to 22 years, participated in a 75-minute focus group interview. The survivors attended the same university located in the mid-Atlantic region of the United States. A transcript-based content analysis was used to analyze the data. Four themes and 2 subthemes were generated from the data analysis. Survivors described that the emotional growth they experienced from their cancer experience has provided them some psychological protection in managing the day-to-day challenges of college life and in making informed choices about engaging in high-risk behaviors. As a result of their cancer experience, the findings suggest that these childhood cancer survivors have a strong foundation of self-awareness and self-worth, which has assisted them in making a successful transition into college life and in enjoying positive collegiate experiences.
The needs of grandparents of children with cancer are often overlooked. This study evaluated a new educational resource (booklet) targeted toward grandparents of children with cancer. A multidisciplinary committee developed a printed booklet targeting grandparents’ information needs identified in a previous study. Seventy-nine grandparents of children with cancer (63% grandmothers, Mage = 66.04, SD = 7.0 years) read and evaluated the booklet. Quantitative responses were analyzed with SPSS, and qualitative responses were thematically coded using QSR NVivo 10. Grandparents’ responses to the resource were positive, with 92% finding the booklet "informative" (n = 73), "useful" (84%, n = 66), and "very relevant" (50%, n = 39). Qualitative responses reflected an appreciation for the booklet’s readability, informative content, and quotes from grandparent experiences. The developed booklet was highly acceptable to grandparents of children with cancer and addressed their need for reassurance and guidance on obtaining further support. This study demonstrates the feasibility of developing and evaluating a targeted resource to meet grandparent’s identified information needs.
This study evaluated the effectiveness of VeinViewer for peripheral vascular accessing a pediatric hematology oncology clinic. After obtaining consent, 53 patients were randomly assigned to either the VeinViewer group (n = 27) or standard methods group (n = 26). Data on number of attempts, procedural time, access complications, and patient and nurse satisfaction were collected. Patients randomized to the VeinViewer group required significantly less time to access a vein as compared with the standard methods group (P ≤ .05). Additionally, these patients rated nurses as having significantly more skill than nurses who did not use VeinViewer (P ≤ .05) and assigned significantly higher scores for "overall experience"(P ≤ .05). Responses by nurses using VeinViewer overall saw the device in a positive light.
Hospital mortality in children who undergo stem cell transplant (SCT) is high. Early warning scores aim at identifying deteriorating patients and at preventing adverse outcomes. The bedside pediatric early warning system (BedsidePEWS) is a pediatric early warning score based on 7 clinical indicators, ranging from 0 (all indicators within normal ranges for age) to 26. The aim of this case-control study was to assess the performance of BedsidePEWS in identifying clinical deterioration events among children admitted to an SCT unit. Cases were defined as clinical deterioration events; controls were all the other patients hospitalized on the same ward at the time of case occurrence. BedsidePEWS was retrospectively measured at 4-hour intervals in cases and controls 24 hours before an event (T4-T24). We studied 19 cases and 80 controls. The score significantly increased in cases from a median of 4 at T24 to a median of 14 at T4. The proportion of correctly classified cases and controls was >90% since T8. The area under the curve receiver operating characteristic was 0.9. BedsidePEWS is an accurate screening tool to predict clinical deterioration in SCT patients.
The aim was to compare self-rated independence in childhood cancer survivors 5 years after diagnosis with corresponding ratings during initial cancer treatment and those in a comparison group. A further aim was to determine whether and how certain clinical and demographic variables affected self-rated independence. Self-rated independence, a dimension included in the health-related quality of life (HRQoL) measure DISABKIDS Chronic Generic Measure (DCGM-37), was assessed in a Swedish cohort of survivors (n = 63, aged 12-22 years) and compared with ratings during initial cancer treatment and those in an age-matched comparison group (n = 257). Potential predictors of self-rated independence were estimated using multiple regression analysis. Survivors rated their independence significantly higher 5 years after diagnosis than during initial cancer treatment and higher than the comparison group. Neither demographic nor clinical variables (age, sex, diagnosis, initial cancer treatment) predicted self-rated independence 5 years post diagnosis. Five years after diagnosis, survivors of childhood cancer appear to have reached a satisfactory level of independence. However, survivors are likely to experience complications over the longer term, and therefore continued follow-up is warranted to follow possible changes in self-reported independence.
Patricia Benner applied the Dreyfus Model of Skill Acquisition to describe and interpret skill acquisition and clinical judgment in nursing practice. Operational definitions for the 5 levels of her original Novice to Expert Theory were used by the study participants in a large Midwestern pediatric hospital to self-identify their level of practice. The frontline clinical managers of these direct care registered nurses (RNs) used the same tool to rate their direct reports. The aim of this portion of a larger study was to determine if the clinical manager’s perception of their direct reports was the same as that of the RNs. The results of this study are being used by one study unit’s clinical managers as the basis for implementing the Hersey and Blanchard Situational Leadership Model. The clinical managers work with their direct reports depending on the level of practice and the details of the task to be performed. One example is creating therapeutic relationships with each other and with families to ensure a safe environment for all.
Numerous instruments have been developed to measure pain within various populations; however, there remains limited understanding of how these tools are applicable to childhood cancer survivors. This study compared a single-item screening measure, the Pain Thermometer (PT), with a more in-depth measure, the Brief Pain Survey (BPS), in a cohort of childhood brain tumor survivors. Ninety-nine survivors (aged 13-32 years) with a median time from diagnosis of 9.9 years (range = 2-18 years) completed the 2 instruments. Thirty-seven survivors (37.4%) were identified on the BPS as having clinically significant pain, but the PT was not found to be an accurate tool for identifying these pain cases. Application of receiver operating characteristic curve analysis of PT ratings against BPS criterion indicated overall concordance between measures. No cutoff score on the PT were identified that resulted in acceptable sensitivity, meaning pain cases identified on the BPS would be missed on the PT. Findings suggest that a multi-item screening measure may better identify clinically significant pain in childhood brain tumor survivors compared with a 1-item screening measure alone.
The Ages and Stages Questionnaires–3® (ASQ-3) for developmental screening in our young oncology patients was pilot tested in children 4 to 48 months of age with newly diagnosed cancer. Subjects were screened within 28 days of diagnosis (baseline), at 6 and 12 months. Twenty-six of 30 enrolled parents (87%) completed all 3 screens. Screens were completed by parents within 15 minutes. ASQ-3 screening identified unsuspected developmental delays as follows: 7 at baseline, 4 at 6 months, and 3 at 12 months. ASQ-3 developmental screening is feasible, identifies early developmental delays in young children with cancer, and helps initiate appropriate referrals.
Pain assessment of the child and adolescent with sickle cell disease is complex and challenging. We present a paradigm of pain assessment during a vaso-occlusive crisis in children and adolescents based on the Pain Assessment as a Social Transaction model. Using this model, the assessment of pain severity in sickle cell disease is uniquely highlighted as comprising at least 4 key factors: the limitations of current pain assessment tools, the existence of acute pain of various origins and the emergence and coexistence of chronic pain, the prevalence of cognitive deficits, and the sociocultural dynamics in America. Improved tools for pain assessment and targeted practitioner education are warranted.