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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.

Background The importance of engaging parents in health research as co‐researchers is gaining growing recognition. While a number of benefits of involving parents as co‐researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co‐researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co‐researchers; and (iii) identify gaps in the literature. Methods A scoping literature review was conducted using established methodology. Four research databases and one large grey literature database were searched, in addition to hand‐searching relevant journals. Articles meeting specific inclusion criteria were retrieved and data extracted. Common characteristics were identified and summarized. Results Ten articles were included in the review, assessed as having low‐to‐moderate quality. Parent co‐researchers were engaged in the planning, design, data collection, analysis and dissemination aspects of research. Structural enablers included reimbursement and childcare. Benefits of engaging parent co‐researchers included enhancing the relevance of research to the target population, maximizing research participation and parent empowerment. Challenges included resource usage, wide‐ranging experiences, lack of role clarity and power differences between parent co‐researchers and researchers. Evaluation of parent co‐researcher engagement was heterogeneous and lacked rigour. Conclusions A robust evidence base is currently lacking in how to effectively engage parent co‐researchers. However, the review offers some insights into specific components that may form the basis of future research to inform the development of best practice guidelines.

Background Professional support in pediatric and rehabilitation care environments has been recommended as a means to build youth competence in life skills during their transition to adulthood. Life skills are the essential psychosocial competencies and interpersonal skills needed to manage one’s life. Residential immersive life skills (RILS) programs offer youth with physical disabilities enriched learning environments to acquire these skills. This study explored trajectories of personal growth in life skills and positive psychological outcomes among youth participating in a RILS program and related caregiver perspectives. Method Delivered by a multidisciplinary healthcare team, The Independence Program is an intensive summer program housed in a college residence that provides realistic experiences of living away from home for small groups of youth between 17 and 21 years of age who have congenital and/or acquired physical disabilities. Using a longitudinal case study and qualitative descriptive design, four youth and their parents/guardians participated in semi-structured interviews prior to, and then 1 month, and 3 to 4 months after the program. A conventional content analysis yielded chronological narratives for each youth and caregiver dyad of their experiences, perceptions and outcomes over time. These narratives were further summarized using a ‘line of development’ perspective to describe individual developmental trajectories of personal growth. Results All four of the youth returned from the program with positive reports about the new life skills acquired and new behaviours they engaged in. These positive reports generally continued post-program, albeit with differing trajectories unique to each youth and varying levels of congruence with their caregivers’ readiness to support, accommodate and facilitate these changes. Caregivers differed in their capacity to shift in their parenting role to support consolidation of youth life skill competencies following program participation. Conclusions RILS programs can be transformative. Varied youth trajectories identified significant personal growth through enhanced self-determination, self-efficacy and self-advocacy. Congruence in youth and caregiver perceptions of post-program changes was an important transactional factor. Professional support addressing caregiver needs may be beneficial to facilitate developmentally appropriate shifts in parenting roles. This shift is central to a model of shared management whereby adolescents take on greater responsibility for their own care and life choices.

Growing research has been conducted into the deployment and evaluation of mobile technology interventions for weight management in adolescents. However, no work has yet been conducted toward the development of these technologies for adolescents with complex health needs receiving specialized tertiary-level health care. The aim of this study was to conduct a user-centered needs assessment of adolescents interested in weight management with complex health needs requiring specialized health care services, their parents, and health care providers (HCPs) to inform the design and development of a mobile app for weight and health management. A qualitative study design was employed. Participants were recruited from two tertiary health care centers. Separate audiotaped focus group interviews were conducted with adolescents aged 12 to 18 years, parents, and HCPs. Interviews were transcribed, and field notes were collected by research staff. Iterative simple content analysis was performed independently by 4 research team members using computer software NVivo (QSR International) 10.0. A total of 19 adolescents, 16 parents, and 21 HCPs were interviewed. Qualitative analysis revealed seven major themes related to app functionality: healthy eating, social support, self-monitoring, communicating with HCPs, supporting mental health, gamification and incentives, and user interface (UI) design. Adolescents provided several ideas related to each feature, whereas parents' views focused on assistance with meal planning and greater access to HCPs. HCPs viewed the app as a novel and more acceptable platform to connect remotely with adolescents than conventional methods. They also strongly endorsed the value of social support capabilities and the ability to connect with an HCP. This is the first study to conduct a qualitative needs assessment in adolescents receiving specialized health care services toward the design of a mobile app for weight and health management. Our results indicate that core components of the app should include tailored meal recommendations and assistance with meal planning, social networking for peer support, customized and convenient tracking, remote access to HCPs, features to support mental health, and an attractive and engaging UI. These findings will be used to develop and evaluate a mobile app targeting adolescents with complex health needs.

Background: Controlling feeding practices are associated with negative child eating behaviors and an increased risk of obesity. Parental stress may be related to feeding practices. Children with developmental disabilities have increased obesity prevalence, and families may also experience increased stress. This study examined the relationship between family stress and parental feeding practices in children with developmental disabilities and how concern for the child's weight may moderate this relationship. Methods: Secondary analysis using a descriptive cross-sectional design was employed. Parents of children aged 5 to 15 years, with autism spectrum disorder (ASD), Down syndrome (DS), or spina bifida (SB) were recruited nationally. Demographics, the Child Feeding Questionnaire, and the Questionnaire on Resources and Stress were completed online. Analysis included regression with an empirical Bayesian effects model. Results: Five hundred twenty-three parents, 186 (ASD), 173 (DS) and 164 (SB), participated. Family stressors were associated with the use of controlling feeding practices. Direct effects included: (1) physical incapacitation on restriction and pressure to eat (ASD and DS); (2) pessimism (ASD) and concerns about child overweight (SB) on pressure to eat; and (3) parent/family problems on restriction (DS). Concern for child overweight moderated these relationships and resulted in two interactions (DS and SB). Conclusion: Understanding the relationship of family stressors with parental feeding practices and the role of parental concern for child overweight can potentially optimize feeding in this high-risk population. This study highlights the need to provide family-centered care with awareness of stress and its potential association with daily activities and children's health.

The sexual agency of youth with physical disabilities is often unacknowledged and underdeveloped. Concerned adults often make decisions about sexual and reproductive care for youth with physical disabilities to protect them from adverse outcomes, such as sexual abuse. Additionally, sexuality resources available to youth with physical disabilities are often not specific to their disability, which may limit their ability to foster positive sexuality. We conducted a systematic review to understand the knowledge created through qualitative inquiry on the sexuality of youth with physical disabilities. We considered qualitative or mixed-method studies published between 1999 and 2021. The electronic databases MEDLINE, PsycINFO, CINAHL, Dissertations and Theses Global were searched, as well as the DuckDuckGo search engine for grey literature. Nineteen peer-reviewed studies and 10 grey literature sources were included. Six themes were identified: (1) Sexuality resources did not adequately support the sexual rights of youth with physical disabilities, (2) Parents of youth with disabilities feared their child was sexually vulnerable, (3) Many healthcare providers felt unprepared to discuss sexuality with youth with disabilities, (4) Youth with physical disabilities experienced discrimination related to their sexuality, (5) The sexual agency of youth with physical disabilities was often unrecognized, and (6) Youth with physical disabilities had diverse sexual experiences and identities. This review revealed the complex, intersecting, and diverse experiences of youth with physical disabilities when it comes to their sexuality. Recommendations call on parents/caregivers, healthcare providers, researchers, and society at large, to combat systemic misconceptions and recognize the sexual agency of youth with physical disabilities.

In a climate of pervasive teacher shortages, initiatives have focused on attracting new teachers to the profession, with hardest-to-staff schools more likely to fill vacancies with early-career teachers, including those with conditional status. In Australia, workforce policy prioritises induction and mentoring to support transition to the profession and improve retention. This paper aims to understand mentor teacher experiences in hardest-to-staff schools, where a growing cohort of inexperienced teachers increases the need for mentoring. The analysis is based on data from semi-structured interviews conducted with teachers in six schools across two Australian states, as part of a larger project exploring work experiences of teachers in hardest-to-staff schools. In addition to formal mentoring, our findings illustrate that in these schools, informal and incidental mentoring is widespread. Further, the iterative nature of novice teacher induction creates a sense of ambivalence in longer-serving teachers. While experienced teachers find reward in supporting early-career colleagues, the hidden labour inherent to constant incidental mentoring encroaches on the time available to manage their own workload, sometimes leading to frustration and even resentment. We conclude that while mentoring is crucial with so many new entrants to the profession, policymakers should be aware of the labour associated with increased incidental mentoring to avoid unintended consequences for teachers who find themselves in the position of supporting growing numbers of new staff.

Every individual should have equal access to sexuality-related information and services. Regrettably, societal stigma revolves around the sexuality of youth with disabilities, with a common misconception that they are asexual, and therefore do not need to be taught about sexuality and sexual health. Healthcare providers (PHCPs) have reported barriers to having sexuality-related conversations with youth with disabilities, such as lack of time and personal discomfort. As such, we sought to examine what might facilitate PHCPs to have conversations about sexuality with their paediatric clients and families. A qualitative focus group study using a descriptive exploratory approach was conducted. Five PHCP participants from a paediatric rehabilitation hospital participated in a focus group. Five young adult (YA) participants with a self-reported disability took part in a separate focus group or individual interviews. Descriptive thematic analysis was used to identify, analyze, and report themes in the data. Results showed that persisting assumptions impede children and youth with disabilities from exploring their sexuality; that autonomy, safety, trust, and consent are critical topics that should be addressed in sexuality-related clinical conversations; and that sexuality-related services should be improved by providing greater disability-specific information, having age-appropriate discussions from an early age, and increasing interdisciplinary care. Normalizing sexuality-related discourse in clinical settings may help youth with disabilities construct a healthy sexual identity, fulfill their sexual needs, and develop adequate skills to deal with sexual situations safely and appropriately.

Health care professionals (HCPs) play a critical role in helping to address weight-related issues with pediatric patients, yet often feel ill-equipped to discuss/manage this complex and sensitive health issue. Using the five As (“Ask, Assess, Advise, Agree, and Assist”) of Pediatric Obesity Management, we created a series of educational videos and evaluated the content, quality (acceptability, engagement), and impact of these videos on HCPs’ self-efficacy, knowledge, and change in practice when addressing weight-related issues with pediatric patients and their families using questionnaires. HCPs (n = 65) participated in a baseline assessment and 4–6 month follow-up (n = 54). Knowledge and self-efficacy increased post-video for the majority of participants. At follow-up, most HCPs reported a change in their practice attributable to viewing the videos, and their self-efficacy ratings improved over time for the majority of questions asked. Most participants rated aspects of each of the videos highly. Preliminary findings suggest that an evidence-based educational toolkit of videos, based on the 5As framework, may lead to changes in self-reported behaviors among HCPs, and sustained improvements in their self-efficacy in addressing weight-related topics with children and their families. (Clinical Trial Number NCT04126291).

Background: Children with disabilities are twice as likely to have overweight/obesity than their typically developing peers. Higher weights in these individuals may compound challenges already experienced with their disability, including mobility and activities of daily living. However, children with disabilities often find it challenging accessing weight management care. It is therefore important to understand the experiences and needs of the health care professionals (HCPs) who work in specialized pediatric weight management clinics about providing weight-related care to children with disabilities. Methods: Employing an interpretive description approach, purposeful sampling was used to recruit 17 HCP participants working in pediatric weight management settings in Canada. Qualitative semistructured interviews were conducted online or via telephone. All interview recordings were transcribed and a reflexive thematic analysis approach was used to develop themes from the data. Results: Four themes were developed: (1) infrequent referrals leads to a lack of experience with children with disabilities; (2) adapting group-based clinics can be challenging; (3) perceived lack of disability-specific knowledge causes moral distress; and (4) disability-specific training and greater interdisciplinary collaboration are desired. Conclusions: This work identifies the urgent need for more evidence-based, specialized, weight-related treatment options for children with disabilities, as well as more support for HCPs working in existing programs.