Purpose Youth with disabilities encounter many challenges in finding employment and transitioning to post-secondary education. In this article, we explore the nature of school-work transitions for ...youth with spina bifida, which few studies have previously addressed. Method We conducted in-depth interviews with 44 participants (nine youth and 12 young adults with spina bifida, 11 parents and 12 clinicians). We analyzed our data using a qualitative content analysis approach. Results We identified several enablers to school-work transitions, including professional support, social support and school accommodations. Lacking such support created several challenges for youth with spina bifida. We also identified several barriers to school-work transitions, including lack of education and information on finances, housing and transportation; discrimination and stigma; and challenges coping with spina bifida at school and work. Conclusions Although some supports are available, youth with spina bifida encounter many challenges in transitioning to post-secondary education and employment. With clinicians at the helm, efforts should be put in place within the health and social services system to better prepare youth, as they transition to adulthood, to become connected to appropriate information and resources to help them to succeed in their school and employment goals.
Implications for Rehabilitation
Youth with spina bifida encounter many challenges in transitioning to post-secondary education or work. Clinicians, educators and parents should continue to support youth with spina bifida in choosing their vocations, setting career goals and developing career plans.
Starting from a young age, parents, clinicians and educators should help youth with spina bifida prepare for school work transitions by fostering their independence, life skills and self-management of spina bifida-related symptoms.
Clinicians and educators should help connect youth with spina bifida to appropriate information and resources to support their school-work transitions, including information on finances, housing, transportation, school accommodations and employment supports.
Rehabilitation research on wellness promotion for children and youth with disabilities is limited and tends to narrowly focus on physical aspects of health. An overarching sense of wellness includes ...multiple, overlapping dimensions (e.g., physical, social, emotional, occupational). This study's main objectives were to explore what wellness means for young people with disabilities, and what contributes to their sense of wellness.
A qualitative design involving World Café-style focus groups was used to explore the perspectives of youth with disabilities (14-25 years old, n = 3), parents (n = 6) and healthcare providers (n = 10) on how wellness is understood and addressed at a Canadian children's rehabilitation hospital. Themes were identified through an inductive analysis of focus group transcripts and notes written by participants and research team members.
Having a variety of relationships and social connections, meaningful activity opportunities, becoming as independent as possible, and having stable medical health contributed to wellness for young people with disabilities.
Rehabilitation care can promote wellness by co-creating personalized care pathways across multiple wellness dimensions with young people with disabilities and their families, focusing on strengths rather than deficits, and improving access to a variety of activities and communities.
IMPLICATIONS FOR REHABILITATION
Rehabilitation professionals in children's rehabilitation have unique, ongoing opportunities to promote and support wellness with young people with disabilities and their families.
Rehabilitation professionals can embed personalized, strengths-focused wellness pathways across multiple dimensions into the care of children with disabilities.
Helping children and families address barriers to meaningful activities and promoting social connections can foster an overarching sense of wellness.
Youth with disabilities often experience limited opportunities to acquire the life skills needed in adulthood. As a result, life skills programs are provided to support life skill development; ...however, little is known about the active ingredients of these programs, and the sustainability of their effects over time. Accordingly, the aim was to synthesize the findings of a five-year study examining the opportunities, experiences, and outcomes of residential immersive life skills (RILS) programs for youth with disabilities. A multi-method prospective study was conducted involving 38 youth ages 14 to 21 with disabilities (e.g., cerebral palsy, spina bifida) attending one of three RILS programs held over three summers. Program opportunities, youth experiences, and outcomes (self-determination, self-efficacy) were assessed pre- and post-program and 3 and 12 months post-program using standardized questionnaires. Pre-program, 3-month, and 12-month follow-up interviews were held with youth and parents. This research synthesis integrates the findings from nine published articles that used a variety of qualitative, quantitative, and mixed methods approaches. RILS programs provided rich opportunities for youth to experience meaningful social connections, psychological engagement, and choice and control, which were associated with changes over time in multiple domains related to personal growth and preparation for adulthood. Overall, the findings point to the transformative power of RILS programs to propel new life directions for some youth. By creating opportunities for meaningful, challenging, and supportive experiences fulfilling basic needs for relatedness, competency, and autonomy, RILS programs motivate youth to grow and change. More study is needed of program opportunities and capacity-enhancing experiences, as well as longitudinal studies of youth life outcomes. RILS programs have appreciable value in preparing youth for the transition to adult roles and responsibilities.
To examine changes in self-determination associated with youth participation in residential immersive life skills (RILS) programs.PURPOSETo examine changes in self-determination associated with youth ...participation in residential immersive life skills (RILS) programs.In this prospective mixed methods study, the Arc's Self-Determination Scale was administered pre- and post-program, and at 3- and 12-month follow-ups, to 27 RILS youth and a comparison group of 11 youth enrolled in a non-residential life skills program. Ten RILS youth were interviewed 3 and 12 months post-program, with content analysis used to explore changes in autonomy, self-realization, and psychological empowerment.METHODIn this prospective mixed methods study, the Arc's Self-Determination Scale was administered pre- and post-program, and at 3- and 12-month follow-ups, to 27 RILS youth and a comparison group of 11 youth enrolled in a non-residential life skills program. Ten RILS youth were interviewed 3 and 12 months post-program, with content analysis used to explore changes in autonomy, self-realization, and psychological empowerment.RILS youth showed statistically significant increases in autonomy immediately after the program, which were maintained one year later, whereas the comparison group displayed increased autonomy only at 3 months post-program. Qualitatively, RILS youth emphasized changes in behavioral autonomy and psychological empowerment 3 months post-program, whereas at one year there was greater emphasis on changes in self-realization. Using a triangulation protocol, the mixed methods data were interpreted as showing agreement regarding changes in autonomy due to intervention, partial agreement regarding self-realization, and dissonance regarding psychological empowerment.RESULTSRILS youth showed statistically significant increases in autonomy immediately after the program, which were maintained one year later, whereas the comparison group displayed increased autonomy only at 3 months post-program. Qualitatively, RILS youth emphasized changes in behavioral autonomy and psychological empowerment 3 months post-program, whereas at one year there was greater emphasis on changes in self-realization. Using a triangulation protocol, the mixed methods data were interpreted as showing agreement regarding changes in autonomy due to intervention, partial agreement regarding self-realization, and dissonance regarding psychological empowerment.RILS programs can enhance the autonomy of youth with physical disabilities and contribute to their sense of confidence and understanding of themselves as they move forward in life.CONCLUSIONSRILS programs can enhance the autonomy of youth with physical disabilities and contribute to their sense of confidence and understanding of themselves as they move forward in life.
Purpose: Although bullying amongst typically developing school-aged children has been well explored, it is under-researched for children with disabilities. The purpose of this study was to understand ...the experiences of exclusion and bullying among children with disabilities. Method: We draw on qualitative in-depth interviews and a focus group with children and youth with disabilities (n = 15) to explore their experiences of exclusion and bullying. Results: Our results showed that restrictions in the socio-contextual environment influenced the social exclusion that children experienced. Youth encountered social exclusion from both teachers and peers. Children reported that teachers' attitudes toward children with disabilities often influenced the social exclusion experienced by peers. Bullies engaged in both implicit and explicit forms of social exclusion toward children with disabilities which often lead to verbal and physical bullying. Conclusions: Children with cerebral palsy are victims of bullying and social exclusion within the school context. More opportunities for social inclusion are needed.
Implications for Rehabilitation
Children and youth with cerebral palsy experience verbal and physical bullying at school.
Rehabilitation health care providers and educators should be cognizant of the symptoms of childhood bullying and be prepared to provide children and their parents with resources on how to cope.
Health care providers and educators should teach children how to explain their disability and their specific needs to their teachers and peers to create more awareness and understanding about their condition.
Introduction: Overweight and obesity (OW/OB) rates are increasing among Canadian children and youth, with rates currently affecting one-third of 5-17 year olds. OW/OB is associated with numerous ...physical and psychosocial consequences, which are compounded when a child has a pre-existing disability. This is concerning considering children with disabilities experience OW/OB at two to three times the rate of their typically developing peers. While the number of weight management programs have been increasing, they are generally designed to meet the needs of typically developing children and often exclude children with disabilities. This review identifies existing weight management programs for youth with disabilities, and examines their characteristics and outcomes.
Methods: A scoping review was conducted using rapid review principles. Three health and social science databases were searched using terms related to "disabilities", "obesity", and "weight management", limited to 2007-2017. Articles meeting the inclusion criteria were summarized and analyzed thematically.
Results: Five articles met inclusion criteria, and described four separate weight management programs. All included children and youth with intellectual disabilities, with one including children with physical disabilities. Programs had three traits in common: (1) utilizing inter/multidisciplinary teams; (2) using technology to deliver the program; and (3) engaging the family during the entire program. All articles reported that the programs reduced body mass index.
Conclusion: The scarcity of programs designed to meet the unique needs of youth with disabilities is alarming. Although a robust evidence base is lacking, current research provides some directions into components that should be considered when designing future interventions.
Implications for Rehabilitation
1. Clinicians should be aware of the high prevalence of overweight and obesity and the resultant consequences in children with disabilities.
2. The use of inter/multidisciplinary teams, technology, and family engagement all appear to be promising approaches to creating successful weight management programs:
a. Weight-management programs should utilize inter/multidisciplinary teams to consider physical, social and psychological aspects of weight and health, to allow treatment plans to encompass a wider range of suggestions and recommendations.
b. Health care providers should consider using technology as a platform to deliver weight-management programs and services and/or to directly track progress.
c. Families are powerful agents of change, and should be consulted and involved in the delivery of weight-management programs.
Purpose: Adolescents with disabilities often demonstrate higher sedentary behaviours, lower physical activity levels, poorer quality diets, and higher rates of overweight and obesity than typically ...developing youth. This study had two objectives: 1) To understand the needs and priorities of adolescents with disabilities, parents, and the healthcare professionals who work with them around healthy lifestyles and weight management; and 2) To explore whether and how a mobile application could address these needs.
Methods: Multiple perspectives were gathered through separate qualitative focus groups with adolescents with disabilities (12-17 years), parents, and rehabilitation healthcare professionals. Data were analysed using descriptive thematic analysis.
Results: Parents (n = 6) and healthcare professionals (n = 9) described the complex needs of adolescents with disabilities around weight management and healthy lifestyles, including balancing differing priorities and a lack of appropriate resources. Adolescents (n = 7) endorsed the potential for technology to enhance their health through empowerment and having a virtual support system. All stakeholder groups endorsed taking a holistic, wellness approach.
Conclusions: Adolescents with disabilities have a complex lifestyle and weight management needs, but mobile applications have the potential to provide individualized support. It is critical that anyone developing mobile applications engage a range of stakeholders as co-designers.
Implications for rehabilitation
Adolescents with disabilities have complex support needs and priorities around weight management and healthy lifestyles.
Existing resources do not take into account the wide-ranging abilities of adolescents with disabilities.
Mobile applications have the potential to empower adolescents and provide tailored support around healthy lifestyles.
Including user input when designing technologies is critical.
Background
Due to reported challenges experienced by healthcare providers (HCPs) when having weight‐related conversations with children with disabilities and their families, a knowledge translation ...(KT) casebook was developed, providing key communication principles with supportive resources. Our aim was to explore how the KT casebook could be implemented into a disability context. Study objectives were to develop and integrate needs‐based implementation supports to help foster the uptake of the KT casebook communication principles.
Methods
A sample of nurses, physicians, occupational therapists and physical therapists were recruited from a Canadian paediatric rehabilitation hospital. Informed by the Theoretical Domains Framework, group interviews were conducted with participants to understand barriers to having weight‐related conversations in their context. Implementation strategies were developed to deliver the KT casebook content that addressed these identified barriers, which included an education workshop, simulations, printed materials, and a huddle and email strategy. Participant experiences with the implementation supports were captured through workshop evaluations, pre‐post surveys and qualitative interviews. Post‐implementation interviews were analysed using descriptive content analysis.
Results
Ten HCPs implemented the KT casebook principles over 6 months. Participants reported that the workshop provided a clear understanding of the KT casebook content. While HCPs appreciated the breadth of the KT casebook, they found the abbreviated printed educational materials more convenient. Strategies developed to address participants' need for a sense of community and opportunities to learn from each other did not achieve their aim. Increased confidence in integrating the KT casebook principles into practice was not demonstrated, due, in part, to having few opportunities to practice. This was partly because of the increase in competing clinical demands at the onset of the COVID‐19 pandemic.
Conclusions
Despite positive feedback on the product itself, changes in the organisational and environmental context limited the success of the implementation plan. Monitoring and adapting implementation processes in response to unanticipated changes is critical to the success of implementation efforts.
The quality and length of life for boys with Duchenne muscular dystrophy (DMD) has improved due to medical advancements, but obesity has emerged as and may pose a risk to their physical health. ...Clinical guidelines recommend attention to weight management, but healthcare professionals (HCPs) find implementing them in clinical care challenging. Little information is available about the perspectives of children with DMD and their families around weight management. This study explored the key priorities of children with DMD, their parents, and HCPs who treat them, around weight management.
Qualitative, individual, semi-structured interviews were conducted and analyzed using a qualitative descriptive approach.
Participants included parents of children with DMD (n = 13), children with DMD (n = 10), and HCPs (n = 14). Theme one: "Competing priorities between healthcare providers, parents, and boys" contained two sub-themes: (i) Body mechanics and function; and (ii) Psychosocial well-being. Theme two: "The realities of living with Duchenne's Muscular Dystrophy," with subthemes: (i) Striving for normality; (ii) The trajectory of DMD; (iii) The labour associated with DMD.
HCPs, parents, and boys have diverging worldviews around weight management, highlighting the importance of integrating the priorities of families into care, even when not aligned with guideline recommendations.
IMPLICATIONS FOR REHABILITATION
HCPs must understand the competing priorities in the lives of children with DMD and their families when discussing weight, weight management, and lifestyle changes.
Quality of life and living a "normal" life are prioritized by children and families over the surveillance and time demands of lifestyle routines recommended by clinicians for weight management.
Weight management recommendations should be based upon the individual needs and priorities of the family.
The purpose of this study was to explore how parents support the health behaviours of their child with a disability, and their motivations for registering their child in a health promotion program ...for children with physical and/or intellectual disabilities.
Using a descriptive qualitative design, semi-structured face-to-face interviews were conducted with individual parents (n = 8) and one group (n = 3) to explore their experiences of health promotion for their child with a disability. Data were analyzed using thematic analysis to identify themes and patterns to develop an understanding of parental perspectives.
Three themes were identified in the analysis of parents' experiences supporting their children in health behaviours and registering them in a disability health promotion program: (1) Parents struggle to meet all of their child's health promotion needs; (2) Parents recognize the social components of healthy behaviours; and (3) Health promotion opportunities tailored for children with disabilities are limited. These themes were not mutually exclusive and had overlapping factors that influenced parental experiences.
Parents experience many challenges supporting the health behaviours of their children with disabilities. This study reinforces the need for accessible, developmentally appropriate, social health promotion programs for children with disabilities.
IMPLICATIONS FOR REHABILITATION
Children with disabilities frequently demonstrate significantly higher sedentary behaviours, lower rates of physical activity and consumption of high-fat foods than their typically developing peers.
Promoting healthy behaviours such as healthy eating and physical activity among children with disabilities and their families is therefore crucial to the child's physical and psychosocial wellbeing.
Parents of children with disabilities have sufficient health literacy and knowledge but report a lack of appropriate opportunities and strategies to support their child in developing healthy behaviours.
Parents need increased availability and accessibility of socially inclusive programs that promote healthy behaviours for children of all physical and cognitive abilities.
