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1) To explore how children with spina bifida (SB) and their parents understand bodyweight, health and weight management; and 2) To identify what services and supports children with SB and their families feel are most appropriate to help them manage their health and weight. The study used interpretive description within a qualitative design. Participants were children with SB (aged 10-18) attending two Canadian SB clinics and their parents. Data were collected through individual interviews and analyzed using inductive thematic analysis. Five children and five parents participated in the study. Children and parents had a weight-centric approach to health, which was related to the child's mobility. Weight was considered to be under individual control and mostly through diet. Trusting relationships between healthcare providers, children and families were important to discuss weight in a non-judgemental manner. Children should be involved in setting meaningful and achievable weight management goals. Greater knowledge of how children with SB and their families understand weight and health offers opportunities for non-judgemental discussions about their needs and wishes. Helping families to place more value on health over weight may reduce feelings of stigma, while allowing children to develop some autonomy over health-related decisions. Children with spina bifida and their parents do not recognise the complexity of factors contributing to weight regulation. Weight regulation was often seen as the child's responsibility, which could lead to feelings of guilt and shame through internalised weight stigma Healthcare professionals working with children with spina bifida should explore their perceptions, beliefs, and behaviours related to weight, health and mobility to ensure they are not causing themselves physical and/or psychological harm [ABSTRACT FROM AUTHOR]

To 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. 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. 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. The findings suggest the importance of the immersive, away-from-home component of residential immersive life skills programs in enhancing the autonomy of youth with disabilities Youth reported changes in their level of autonomy after attending residential immersive life skills programs, as well as feeling more confident in living on their own Residential immersive life skills programs can contribute to youth's understanding of themselves as they transition to adulthood [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This study explored the acceptability of Children and Teens in Charge of their Health (CATCH), a program for children with spina bifida or cerebral palsy to enhance their physical activity and diet. Qualitative interviews were conducted with children (n = 6) and their parents (n = 6) who participated in CATCH. Analysis used an environmental systems framework. Microsystem factors impacting acceptability of the program were: Children's motivations for change, their age, and their physical health. Mesosystem factors were: Use of virtual coaching and the relationship between coach and child. Macrosystem factors (e.g. Covid-19), did not impact acceptability, but affected some goal attainment strategies. CATCH was broadly acceptable to children and parents and shows promise as a health promotion program tailored to children with disabilities. An environmental systems framework can potentially help other health promotion programs enhance their acceptability and success. [ABSTRACT FROM AUTHOR]

Purpose: 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. Methods: 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. Results: 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. Conclusions: 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. [ABSTRACT FROM AUTHOR]

Background The co-presentation of severe obesity (SO) and global developmental delay (GDD) in Canadian preschool children has not been examined. However, SO and GDD may require syndromic diagnoses and unique management considerations. Objectives To determine (1) minimum incidence; (2) age of onset and risk factors; and (3) health care utilization for co-presenting SO and GDD. Methods Through the Canadian Paediatric Surveillance Program (CPSP), a monthly form was distributed to participants from February 2018 to January 2020 asking for reports of new cases of SO and GDD among children ≤5 years of age. We performed descriptive statistics for quantitative questions and qualitative content analysis for open-ended questions. Results Forty-seven cases (64% male; 51% white; mean age: 3.5 ± 1.2 years) were included. Age of first weight concern was 2.5 ± 1.3 years and age of GDD diagnosis was 2.7 ± 1.4 years. Minimum incidence of SO and GDD was 3.3 cases per 100,000 for ≤5 years of age per year. Identified problems included school and/or behavioural problems (n = 17; 36%), snoring (n = 14; 30%), and asthma/recurrent wheeze (n = 10; 21%). Mothers of 32% of cases (n = 15) had obesity and 21% of cases (n = 10) received neonatal intensive care. Microarray was ordered for 57% (n = 27) of children. A variety of clinicians and services were accessed. As reported by CPSP participants, challenges faced by families and health service access were barriers to care. Conclusion Children with SO and GDD have multiple comorbidities, and require early identification and referral to appropriate services. These cases may also benefit from additional testing to rule out known genetic obesity syndromes. [ABSTRACT FROM AUTHOR]

The objective of this study was to comprehensively evaluate inclusive out-of-school time physical activity programs for children/youth with physical disabilities. A search of the published literature was conducted and augmented by international expertise. A quality appraisal was conducted; only studies with quality ratings ≥60% informed our best practice recommendations. Seventeen studies were included using qualitative (n = 9), quantitative (n = 5), or mixed (n = 3) designs. Programs had a diversity of age groups, group sizes, and durations. Most programs were recreational level, involving both genders. Rehabilitation staff were the most common leaders. Outcomes focused on social skills/relationships, physical skill development, and psychological well-being, with overall positive effects shown in these areas. The best practice recommendations are consistent with an abilities-based approach emphasizing common group goals and interests; cooperative activities; mastery-oriented, individualized instruction; and developmentally appropriate, challenging activities. Results indicate that inclusive out-of-school time physical activity programs are important for positive psychosocial and physical skill development of children/youth with physical disabilities. [ABSTRACT FROM AUTHOR]

Parenting influences child development. There is limited research, however, related to parenting children who have developmental disabilities. The aims of this study were to: (1) describe the parenting styles and dimensions of parents of children with developmental disabilities and (2) assess differences in parenting styles and dimensions among parents of children with autism spectrum disorder (ASD), Down syndrome (DS), and spina bifida (SB). Secondary data analysis was conducted from a nationwide cross‐sectional study of 496 parents of children aged 5–16 years with ASD (n = 180), DS (n = 156), or SB (n = 160). Parent scores indicated high use of the authoritative parenting style and associated parenting dimensions, mid‐to‐low use of the permissive parenting style, and low use of the authoritarian parenting style and associated dimensions. Variation in parenting styles and dimensions among parents was primarily related to the child's diagnosis and family income. An unanticipated but positive finding was that parents with lower family incomes had significantly higher scores for the authoritative parenting style. Results from this study can inform future research that might inform clinical practice. [ABSTRACT FROM AUTHOR]

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. 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. [ABSTRACT FROM AUTHOR]

This qualitative study aimed to explore the experiences of parents supporting their child with Autism Spectrum Disorder (ASD) and overweight or obesity (OW/OB), including their weight management support needs. Interview transcripts were analysed using inductive thematic analysis. Nine parents (n = 9 mothers) of ten children with ASD (7 males, 3 females) participated in individual semi-structured interviews. The three themes developed were: (1) Our journey to obtain weight management support; (2) I need real-world solutions; and (3) The what, who and how of our weight management needs. Parents reported being proactive in seeking weight management support for their child but were disappointed with the services offered. Resources were not tailored to the child's complex nutrition and behavioural issues or their abilities and functioning. A multidisciplinary approach that integrated both disability and weight management expertise was desired, but not experienced. A range of formal and informal programs were recommended. This study provides a call to action for supports that ensure children with ASD and OW/OB receive integrated, individualised support to maximise their health and wellness. Children with autism spectrum disorder (ASD) are at high risk of developing overweight or obesity. The weight management support needs of parents of children with ASD and overweight or obesity are not being met. Support must be tailored to the child's needs, which are often complex. Health services that integrate expertise in both disability and weight management are needed for children with ASD and their families. [ABSTRACT FROM AUTHOR]

This study explored the meaning of the after-hours social experiences of youth with disabilities in a residential life skills program. After-hours experiences occur outside of formal program hours, primarily in the evenings. Five youth with cerebral palsy (three females) participated in an exploratory photo elicitation study while attending one of two residential immersive life skills programs. Following an auto-driven photo elicitation method, youth took photos of their choosing and then were interviewed about photos they elected to share. Interview data were analyzed thematically. Themes illustrated meaningful social experiences and their benefits. Two themes described the after-hours social experiences of most importance to youth: learning about strengths from working together, and having meaningful individual and group conversations. Three themes reflected benefits reported by youth: learning about differences among people, gaining new perspectives and new knowledge about oneself, and developing friendships and a sense of "family." The findings illuminate the benefits of after-hours social experiences for youth who may have had little opportunity previously to informally interact with other youth with disabilities. The findings highlight the importance of the immersive, group nature of a residential, away-from-home youth transition program, particularly the value added by the after-hours program component. The findings support the value of an over-night residential aspect for life skills programs for youth with disabilities. Residential immersive life skills programs provide opportunities for youth to discuss common experiences and shared challenges, leading to the formation of social bonds. Residential immersive life skills programs provide opportunities for youth to interact with peers in the absence of adults, and to make choices about how to use their personal time. It is important to intentionally design transition programs to provide opportunities for after-hours social experiences, including working together and socializing. [ABSTRACT FROM AUTHOR]

To identify current practices related to the assessment, monitoring and discussion of bodyweight, growth and obesity in neuromuscular clinics for children with Duchenne muscular dystrophy (DMD). A cross-sectional, online survey was distributed using snowball sampling to healthcare providers working with children with DMD across Canadian neuromuscular clinics. Summary and descriptive statistics were calculated. Content analysis was performed on open text responses. Thirty-seven responses were received, representing a range of healthcare disciplines. Height and weight were routinely assessed by 32/37 (87%) respondents, although only 21/37 (57%) responses reported having a clinic standard for measuring height and 23/37 (62%) for weight. While 32/36 (89%) reported discussing weight during consultations, only 13/37 (35%) felt confident doing so. Dietitians were considered the most appropriate person to discuss and manage weight with children and families, although only 17/37 (46%) reported having a dietitian involved in their clinic. Neuromuscular clinics could benefit from implementing consistent and recommended growth assessment practices. The development of evidence-based tools, training and protocols tailored to Duchenne muscular dystrophy should be a priority. Growth and weight monitoring approaches vary within and between neuromuscular clinics. Additional training on discussing and managing weight are warranted across disciplines. Advocacy is required to ensure access to dietetic expertise within neuromuscular clinics. [ABSTRACT FROM AUTHOR]

To examine the opportunities, experiences, and outcomes of a transition program for youth with disabilities. Over three years, in a prospective study, 29 youth (17 males) attending residential immersive life skills programs reported on their experiences in 55 activity settings in which opportunities were also rated using standardized measures. Youth completed outcome measures of self-determination and self-efficacy pre-and post-intervention, and 3 and 12 months later. The alignment of opportunities and experiences was examined, as well as effects of experiences on outcomes. Opportunities were significantly correlated with experiences for males only. There were significant pre–post changes in autonomy (all youth) and self-efficacy (males only). Social and personal growth experiences predicted pre–post changes in autonomy, and experiences of psychological engagement (all youth) and choice and control (males only) predicted changes in psychological empowerment. The findings highlight the importance of designing transition programs to provide experiences of social interaction, personal growth, choice, and psychological engagement in order to enhance autonomy and empowerment. Further investigation is needed on how gender influences youth experiences. Context–mechanism–outcome linkages offer a useful frame to examine opportunities, experiences, and outcomes, and reveal multiple pathways to changes in youths' self-determination brought about by program involvement. Residential immersive life skills (RILS) programs enhance the autonomy and empowerment of youth with disabilities. The findings show the value of RILS programs and other complex interventions that provide youth of transition age with a rich variety of opportunities and capacity-enhancing experiences. It is important to intentionally design opportunities for social interaction, personal growth, choice, and psychological engagement. It is important to ensure youth are engaged with program content, and feel a sense of social belonging, choice, and personal growth, because these experiences were found to be related to changes in youths' autonomy and empowerment. Gender differences in program experiences and outcomes were found, which is an important and overlooked area of research. [ABSTRACT FROM AUTHOR]

Background: Healthcare professionals (HCPs) play an important role in discussing weight with children and their parents but report barriers such as lack of training and supports. These barriers are especially prevalent within specialized populations such as children with autism spectrum disorder (ASD). To address this, a Knowledge Translation Casebook on positive weight‐related conversations was developed by a research team at a Canadian paediatric hospital. The purpose of the current pre‐implementation pilot study was to explore initial acceptability and adoption of the Casebook into clinical settings. Methods: An interactive, multimodal education workshop was created to provide HCPs with knowledge and training on how to have positive weight‐related conversations with children and parents. Two workshops were conducted using the same curriculum but delivered either in‐person or online. Participants were drawn from a team of clinicians at a teaching hospital whose care focuses on medication management for clients with ASD and clinicians participating in a distance learning programme on best practice care for clients with ASD. Participants completed a demographic questionnaire, workshop evaluation, and a pre‐workshop and post‐workshop questionnaire. Descriptive statistics were used to summarize demographic, questionnaire, and survey data. Answers to open‐ended questions were analysed using content analysis. Results: Participants agreed that the workshop gave them a clear understanding of the Casebook's content and helped them easily navigate the Casebook. Based on raw scores, self‐efficacy in having weight‐related conversations seemed to increase from pre‐to post‐workshop, but reported weight‐management clinical practice scores did not change over time. However, the small sample precluded in‐depth statistical analysis. Conclusions: The Casebook was acceptable and appeared to increase self‐efficacy about having weight‐related conversations with children with ASD and parents. More robust implementation strategies are needed to foster the uptake of best practices in weight‐related conversations into clinical practice. [ABSTRACT FROM AUTHOR]

Purpose: Identify parent-focused transition practices for parents of children born preterm/acutely ill when transitioning from Neonatal Follow-Up Programs (NFUP) to Children's Treatment Centers or Networks (CTCN). Methods: NFUP and CTCN health-care providers participated in an online survey and qualitative interviews. Quantitative data were analyzed using descriptive statistics and qualitative data underwent conventional content analysis. Results: 60 participants (17 sites) from diverse health disciplines completed the survey, and 14 (from 11 of 17 sites) participated in a follow-up interview. Enablers to transition included knowledgeable practitioners, shared services, and family engagement; although not present across all sites. Barriers commonly reported were a lack of time, understanding of roles, and parent engagement. Conclusion: Research study findings highlight the need to improve and bridge NFUP to CTCN parent-focused transition practices. Recommendations for next actions steps include improved cross-sector communication, bridging sectors through enhanced service provision, and moving from information provision to family engagement. [ABSTRACT FROM AUTHOR]

Childhood obesity is a global health concern, but children with spina bifida in particular have unique interacting risk factors for increased weight. PURPOSE: To identify and explore current clinical practices around weight assessment and management in pediatric spina bifida clinics. METHODS: An online, self-report survey of healthcare professionals (HCPs) was conducted in all pediatric spina bifida clinics across Canada (15 clinics). Summary and descriptive statistics were calculated and descriptive thematic analysis was performed on free text responses. RESULTS: 52 responses across all 15 clinics indicated that weight and height were assessed and recorded most of the time using a wide variety of methods, although some HCPs questioned their suitability for children with spina bifida. Weight and height information was not routinely communicated to patients and their families and HCPS identified considerable barriers to discussing weight-related information in consultations. CONCLUSION: Despite weight and height reportedly being measured regularly, HCPs expressed concern over the lack of appropriate assessment and classification tools. Communication across multi-disciplinary team members is required to ensure that children with weight-related issues do not inadvertently get overlooked. Specific skill training around weight-related issues and optimizing consultation time should be explored further for HCPs working with this population. [ABSTRACT FROM AUTHOR]

Addressing sexuality can support youth to thrive with positive development. Healthcare providers (HCPs) are uniquely positioned to offer such support given their professional knowledge and relationship with youth. This paper aims to identify and summarize suggestions to support HCPs to discuss sexuality with youth. A scoping review methodology was used and 17 studies were identified from four databases (i.e., Embase, Medline, CINAHL, PsycINFO). Six suggestions for practice were identified, including (i) establish a trusting relationship; (ii) create a safe and comfortable environment; (iii) ask for consent and keep conversation confidential; (iv) initiate the conversation; (v) use inclusive language; and (vi) discuss the psychosocial aspect of sexuality. It was also found that youth with a disability or chronic condition were under-represented in the literature. Future research should evaluate the clinical utility of these suggestions and how suggestions can be adapted to meet the sexuality needs of youth with a disability. [ABSTRACT FROM AUTHOR]