A Case Study Implementing a Social Needs Screening Process and a Family Navigation Hub at Holland Bloorview Kids Rehabilitation Hospital.

Identifying and addressing clients' and families' most pressing social determinants of health needs are integral to quality healthcare. Healthcare leaders and front-line clinicians have long recognized the connection between unmet essential resource needs, such as food, housing and transportation and health outcomes. As a component of broader organizational efforts to improve equitable access to services, a social needs screening (SNS) initiative was introduced, along with a Family Navigation Hub providing navigation interventions. This paper describes the systematic approach taken to support the SNS initiative implementation and highlights evaluation results of the first year of activity.

Current State of Knowledge on Digital Rectal Stimulation in Individuals With Traumatic and Nontraumatic Spinal Cord Injury: A Scoping Review.

OBJECTIVES: To map and characterize the nature of the evidence on the use of digital rectal stimulation for bowel management in individuals with spinal cord injury (SCI). DATA SOURCES: Five electronic databases were searched (ie, MEDLINE, EMBASE, CINAHL, Cochrane CENTRAL, and Cochrane Incontinence Group) from 1990 to November 2019. STUDY SELECTION: Articles that provided information on the use of digital rectal stimulation either alone or in combination with treatments were included. Title and abstract screening was split between 2 reviewers after reaching consensus on the first 100 studies screened. Full-texts were reviewed independently by 2 reviewers. Discrepancies were resolved by a third reviewer. DATA EXTRACTION: The data extraction form was developed by 2 reviewers and piloted. Data were extracted by one reviewer and checked for accuracy by a second reviewer. DATA SYNTHESIS: A total of 4841 studies were screened, including 425 full text articles; 33 articles were identified. Thirty-two studies focused solely on individuals with SCI and 1 study explored the experiences of caregivers of individuals with SCI. The majority of participants were aged between 30 and 59 years old. Most studies used quantitative methods (n=30, 91%). Fourteen of the studies (42%) were cross-sectional. Within experimental or quasiexperimental designs, digital rectal stimulation was commonly studied as an adjunct to other methods such as suppositories or enemas. Incontinence and defecation time were the most commonly examined outcomes. CONCLUSION: There were few studies found that focus on digital rectal stimulation. Further studies examining experience, effectiveness, complications, and long-term outcomes are warranted.

Are healthcare providers and young people talking about sexuality? A scoping review to characterize conversations and identify barriers.

BACKGROUND: Conversations about sexuality with healthcare providers (HCPs) are critical to youth's positive development, including youth with disabilities or chronic conditions. Yet, little is known about the characteristics of sexuality conversations with youth in healthcare settings. This scoping review examined the nature and extent of sexuality conversations between HCPs and youth (with and without a disability or chronic condition) and aimed to identify barriers to these conversations. METHODS: Scoping review methodology using rapid review principles was employed. INCLUSION CRITERIA: studies published between 2009 and 2019; examined conversations between HCPs and youth aged 21 and below; addressed sexuality; and took place in a healthcare setting. Study characteristics were described and clustered into thematic groups. RESULTS: Of the 5543 identified, 32 articles were included. Articles addressed (i) the content of sexuality conversations, (ii) prevalence of sexuality conversations and (iii) barriers to discussing sexuality. The content of sexuality discussions was largely biologically focused. The prevalence of sexuality discussions varied, with some discrepancy between youth-reported and HCP-reported rates. Seven barriers (three personal and four systemic) were identified. Youth with disabilities or chronic conditions were vastly under-represented in the published literature. CONCLUSIONS: This study highlighted that sexuality is an underexplored topic between HCPs and young people, especially young people with disabilities and/or chronic conditions. Given the importance of sexuality to young people's mental and physical health, research addressing barriers to these discussions and development of evidence-informed resources to support HCPs and youth to engage in conversations about sexuality should be a priority.

Communication tools used in childhood obesity discussions: A scoping review.

BACKGROUND: Paediatric healthcare professionals (HCPs) play an essential role in the prevention and management of childhood obesity; however, many report considerable barriers to having weight-related conversations, including a lack of confidence. One way to address this is to use communication tools, such as charts, pictures and handouts. This scoping review's objective was to identify the extent and nature of available tools in the published literature that aimed to support HCPs in having positive weight-related conversations with children and families. METHODS: CINAHL, Medline and PsycINFO were systematically searched from 2005 to 2019. Articles were selected based on (a) use of an identified communication tool; (b) tool designed for use with children between the ages of 2 and 18 and/or their parents; (c) tool designed to be used in weight-related discussions; and (d) tool designed to be used by HCPs in a formal healthcare setting. RESULTS: Of the 3,596 articles yielded after deduplication, 13 unique communication tools were identified. Tools were grouped according to three themes: (a) help communicate child's weight status; (b) provide a communication framework for HCPs; and (c) actively engage children and/or parents in discussions. Many of the tools were recently developed and had not been evaluated in clinical practice. The clinical utility of each tool was evaluated. CONCLUSION: This study identified 13 communication tools HCPs could use when having weight-related discussions. However, there was a lack of evaluation and clinical utility. Only one tool had high clinical utility, and not all tools would be recommended for use in practice.

Residential immersive life skills programs for youth with disabilities: a case study of youth developmental trajectories of personal growth and caregiver perspectives.

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.

Residential immersive life skills programs for youth with disabilities: Experiences of parents and shifts in parenting approaches.

INTRODUCTION: Residential immersive life skills (RILS) programs are designed for youth with disabilities and facilitate the development of adaptive behaviors for life skills required to navigate adulthood. This study explored parents' experiences of the RILS program journey, shifts in parenting approaches, and the implications of those shifts. METHODS: This study draws on twenty-three qualitative interviews that were conducted with nine parents of youth who attended RILS programs in Ontario, Canada. Three rounds of interviews were conducted at three different time points: Pre-program, 3 months post-program, and 12 months post-program. Data were analyzed using a constructivist grounded theory approach. RESULTS: The interviews captured parents' experiences of the RILS program journey and how their parenting changed as a result. Three overarching themes emerged: (1) Anticipation of RILS programs served as a catalyst for experiencing positive and negative tensions in parenting; (2) Parenting shifted following RILS programs; and (3) Where parenting shifts were limited, challenges for youth arose and reduced youth future growth. CONCLUSION: Parenting approaches can shift as a result of youth attending RILS programs. These shifts can create complex and challenging implications for parents as they seek to further encourage youths' development. This study offers an understanding of the implications of parenting during youths' developmental transition of adolescence to adulthood, and offers recommendations to further support parents in sustaining youth development of life skills during this developmental transition.

Paediatric gastrostomy stoma complications and treatments: A rapid scoping review.

AIMS AND OBJECTIVES: To provide a scoping review of the types of treatments used to address paediatric skin-related stoma complications specific to infection, hypergranulation and gastric leakage, and explore their effectiveness and indications for use. BACKGROUND: Stoma-related complications can be a common occurrence for children with gastrostomy (G) and gastrojejunostomy (GJ) tubes. Nurses require guidance to inform decision-making of the broad spectrum of treatments used in clinical practice. DESIGN: A scoping review using a rapid review approach. METHODS: Working with a multidisciplinary health professional team, search terms were generated. A systematic search of CINAHL, MEDLINE and EMBASE databases was completed, coupled with an Internet search to identify relevant clinical practice guidelines and hand searching of citation lists. Eligible articles were peer-reviewed English publications, focused on paediatric populations aged 18 years and under, dating from 2002-2016 and described complications and treatment approaches related to G- and GJ-tube stomas. Pertinent information was extracted using a standardised template, and a narrative synthesis approach was used to analyse the data. RESULTS: Twenty-five articles were included in this review. Study designs varied, and complication management was often a secondary focus. A broad spectrum of treatments was used to manage each complication type. There was a lack of consensus on lines of therapy; however, a stepwise approach was often used for complication management, particularly for infections. CONCLUSIONS: The evidence on the comparative effectiveness of different treatment strategies of skin-related gastrostomy stoma complications in paediatric practice is sparse. Current evidence is generally limited to expert opinions. Future studies examining efficacy of treatments and their indications for use with children are warranted. RELEVANCE TO CLINICAL PRACTICE: Effective management of skin-related stoma complications is important to maintain health and wellness among children who rely on G- and GJ-tubes for nutrition support.

Construct validity of the family impact of assistive technology scale for augmentative and alternative communication.

The Family Impact of Assistive Technology Scale for Augmentative and Alternative Communication (FIATS-AAC) measures parent-reported functioning and factors that affect functioning in children who use AAC. The aim of the current study was to assess its construct validity. For the study, 47 parents of children with AAC needs completed the FIATS-AAC and two other parent-reported questionnaires: a child quality-of-life measure and a community participation measure. An interview was also conducted with a sub-set of six parents. The FIATS-AAC showed a significant correlation with the child quality-of-life measure, but no significant associations with the community participation measure. Interviews suggested some consistency between parents' perceptions of their child's communicative functioning after comparing their FIATS-AAC scores and interview responses. This study provides evidence for the emerging construct validity of the FIATS-AAC as a measure linked to psychosocial aspects of quality-of-life in children with AAC needs between the ages of 6- and 12-years.

Responsiveness of a parent-reported outcome measure to evaluate AAC interventions for children and youth with complex communication needs.

Evaluation of the effectiveness of augmentative and alternative communication (AAC) interventions requires reliable measures that are responsive to change. The aim of this study was to explore the potential of the Family Impact of Assistive Technology Scale for AAC (FIATS-AAC) to detect functional change in children and youth with AAC needs, aged 3-17 years, and their families, 6 and 12 weeks after receiving a graphic-based, speech-generating device (SGD). Parents whose children were awaiting a SGD as part of their regular AAC service participated in the study. In all, 45 parents completed the FIATS-AAC during each of three phone interviews: at the time of device delivery, and then 6 weeks and 12 weeks after receiving the device. Children and youth were aged 3-16 years (M = 7.8, SD = 3.3) and were mostly context-dependent communicators. Paired t-tests indicated statistically significant gains in functioning from baseline to both 6 and 12 weeks after receiving the AAC device. Effect sizes were 0.41 and 0.38, respectively. This study provides initial support for the ability of the FIATS-AAC to detect functional changes in children and youth and their families after receiving a graphic-based SGD.

Optimizing life success through residential immersive life skills programs for youth with disabilities: study protocol of a mixed-methods, prospective, comparative cohort study.

BACKGROUND: Young people with disabilities often lag behind their typically developing peers in the achievement of adult roles, which has been attributed to a lack of opportunities to develop critical life skills. Residential Immersive Life Skills (RILS) programs provide situated learning opportunities to develop life skills alongside peers and away from home in real-world settings. Retrospective research suggests that attending RILS programs is a transformative experience that empowers youth, provides parental hope, and increases service provider expertise. However, prospective, comparative research is needed to determine longer term benefits of these programs on youth life trajectories, in addition to exploring the program features and participant experiences that optimize program success. This protocol describes a 5-year, multi-site prospective study examining the effects of RILS programs for youth with disabilities. METHODS: The study involves RILS programs at three sites in Ontario, Canada. Cohorts of treatment and control groups will receive the study protocol over 3 successive years. Thirty English-speaking participants aged 14-21 years with a child-onset disability and the cognitive capacity to engage in goal setting will be recruited every year for 3 years in the following groups: youth attending a RILS program (Group A); a deferred RILS control group of youth (Group B); a control group of youth attending a non-residential life skills program (Group C); and a control group matched on age, diagnoses, and cognitive capacity not receiving any life skills intervention (Group D). All participants will complete measures of self-determination and self-efficacy at four time points. Program opportunities and experiences will also be assessed in-the-moment at the RILS programs. Qualitative interviews pre-program and at 3- and 12-months post-program will be undertaken with a sub-sample of youth and parents to explore their expectations and experiences. DISCUSSION: This study will address key gaps in the literature pertaining to the long-term impact of RILS programs and the role of immersive environments in shaping youth outcomes and experiences. Our research program aims to uncover transferable processes and essential features by which RILS programs have their effects on attitudes, cognitions, and behaviour. TRIAL REGISTRATION: The trial registration number on clinicaltrials.gov is NCT02753452 (retrospectively registered 26 April 2016). Trial sponsor: Holland Bloorview Kids Rehabilitation Hospital.

Optimal Pain Assessment in Pediatric Rehabilitation: Implementation of a Nursing Guideline.

In Ontario, Canada, the Registered Nurses' Association promotes a Best Practice Spotlight Organization initiative to enhance evidence-based practice. Qualifying organizations are required to implement strategies, evaluate outcomes, and sustain practices aligned with nursing clinical practice guidelines. This study reports on the development and evaluation of a multifaceted implementation strategy to support adoption of a nursing clinical practice guideline on the assessment and management of acute pain in a pediatric rehabilitation and complex continuing care hospital. Multiple approaches were employed to influence behavior, attitudes, and awareness around optimal pain practice (e.g., instructional resources, electronic reminders, audits, and feedback). Four measures were introduced to assess pain in communicating and noncommunicating children as part of a campaign to treat pain as the fifth vital sign. A prospective repeated measures design examined survey and audit data to assess practice aligned with the guideline. The Knowledge and Attitudes Survey (KNAS) was adapted to ensure relevance to the local practice setting and was assessed before and after nurses' participation in three education modules. Audit data included client demographics and pain scores assessed annually over a 3-year window. A final sample of 69 nurses (78% response rate) provided pre-/post-survey data. A total of 108 pediatric surgical clients (younger than 19 years) contributed audit data across the three collection cycles. Significant improvements in nurses' knowledge, attitudes, and behaviors related to optimal pain care for children with disabilities were noted following adoption of the pain clinical practice guideline. Targeted guideline implementation strategies are central to supporting optimal pain practice.

Towards Advancing Knowledge Translation of AAC Outcomes Research for Children and Youth with Complex Communication Needs.

The production of new knowledge in augmentative and alternative communication (AAC) requires effective processes to leverage the different perspectives of researchers and knowledge users and improve prospects for utilization in clinical settings. This article describes the motivation, planning, process, and outcomes for a novel knowledge translation workshop designed to influence future directions for AAC outcomes research for children with complex communication needs. Invited knowledge users from 20 pediatric AAC clinics and researchers engaged in the collaborative development of research questions using a framework designed for the AAC field. The event yielded recommendations for research and development priorities that extend from the early development of language, communication, and literacy skills in very young children, to novel but unproven strategies that may advance outcomes in transitioning to adulthood.

The 'placement' of people with profound impairments across the lifespan: re-thinking age criteria.

BACKGROUND: Advances in lifesaving technologies and treatments make it possible for children with profound physical and cognitive impairments to survive into adulthood. Questions regarding how and where they should live are discussed rarely and, when they are, primarily focus on safety and/or containing costs. Since models of long-term care provision are age-based, children who reside in institutions are 'discharged' to adult facilities when they reach an arbitrary age. Such transfers may not be in the best interests of these young people or their families. Our aim in this debate is to highlight why age is a problematic criterion for placement decisions, with the goal of stimulating further research and inquiry. DISCUSSION: Transfers from pediatric to adult institutions are driven primarily by funding arrangements and underpinned by stage-based theories of human development. Arguments supporting such transfers point to the value of communal living with same age peers, and engagement in age-appropriate activities. These goals are questionable for individuals who are minimally interactive and/or where equally worthy interactions are feasible in intergenerational settings. Instead their accommodation needs might more closely align with palliative care principles of supporting individuals and families to enjoy what they bring to each other's lives and minimize suffering. Innovative models of 'vertical care' and 'lifetime homes', which enable continuous flexible services across the lifespan, are discussed as examples of alternative approaches requiring further debate and research. SUMMARY: Entrenched funding and service models that require the transfer of profoundly impaired young people from pediatric to adult facilities need to be re-examined with considerations of best interests, needs, and preferences of individuals and their families. Questions of what constitutes a 'good life' for these individuals are tenacious and require further thought and research. Nevertheless, they need to be regarded as citizens of our human community deserving of a good life in whatever form that may take, in settings that enable them to flourish.

Exploring the adaptability of TeachABI as an online professional development module for high school educators.

Objective: Educators often lack the knowledge and resources to assist students with acquired brain injury (ABI). TeachABI, an education module, was created to help elementary school teachers support students with ABI in classrooms. This study examined the adaptability of TeachABI for high school educators. Methods: A qualitative descriptive study explored high school educators' (n = 9) experiences reviewing TeachABI and its adaptability for high school through semi-structured interviews. The interview guide was informed by implementation and adaptation frameworks. Transcripts were examined using directed content analysis. Results: Teachers felt TeachABI was a good foundation for creating a high school-based education module. Adaptations were highlighted, such as streamlining content (e.g., mental health) and strategies (e.g., supporting test taking), to better meet educator needs. Conclusions: Using implementation science and adaptation frameworks provided a structured approach to explore the adaptive elements of TeachABI. The module was perceived as a suitable platform for teaching high school educators about ABI. Innovation: TeachABI is an innovative, user informed education module, providing a multi-modal (e.g., case study, videos) and replicable approach to learning about ABI. Applying frameworks from different fields provides concepts to consider when tailoring resources to align with educator needs (e.g., grade, class environment) and facilitate innovation uptake.

Biomusic: a novel technology for revealing the personhood of people with profound multiple disabilities.

It is often difficult for family members and caregivers to interact with persons with profound multiple disabilities (PMD) because of the severely compromised communicative repertoire of this population. The resulting communication challenges may limit the ability of others to perceive personhood in individuals with PMD. This preliminary study investigated the effects of music generated in real time from physiological signals (biomusic) on caregiver perceptions of their interactions with persons with PMD. Caregivers (n = 10; parents and clinical staff) engaged in four, 10-min interactions with a person with PMD (n = 3; diagnoses = traumatic brain injury, pervasive developmental disorder, hypoxic brain injury), whose biomusic was projected throughout. Caregivers participated in two open-ended, semi-structured interviews to explore the effect of biomusic on these interactions. Most caregiver responses to biomusic were very positive, and many reported that biomusic caused an improvement in their interaction with and perceptions of the person with PMD. By providing audible evidence of the changing physiological state of persons with PMD, biomusic may enhance the perceived personhood of these individuals and enrich interactions with their family members and caregivers.

Benefits of residential immersive life skills programs: a prospective study of autonomy and self-efficacy gains and sex differences in youth with disability.

PURPOSE: To determine whether Residential Immersive Life Skills programs (RILS) result in reliable change in autonomy and self-efficacy of youth with disabilities and whether gains persist over time. Sex differences and program response patterns were also examined. MATERIALS AND METHODS: Autonomy from the ARC's Self-Determination Scale and self-efficacy from the General Self-Efficacy Scale were completed by participants at baseline, post-intervention, 3-month, and at 12-month follow-ups. Reliable change index was calculated and examined over time. RESULTS: Autonomy improved significantly following the completion of RILS program and gains persisted and increased at 12-month follow-up. Participants who reliably improved in autonomy (program-responders) also improved in self-efficacy. The program-responders began the program with significantly lower autonomy and self-efficacy scores at baseline and differed in personal factor relative to those who did not experience increased autonomy post-program (non-responders). There were sex differences in program response with more male participants responding to the program. CONCLUSIONS: RILS programs can result in sustained improvements in autonomy and self-efficacy. Urgency for change and personal needs/priorities may contribute to growth experiences. We recommend including a social connectedness module that formally facilitates friendships and social development to better meet the social needs of all youth, especially females with disabilities.

Youth's autonomy improves following participation in Residential Immersive Life Skills programs.Over time, improvements in youth autonomy may lead to improvements in self-efficacy.It is important to measure gains over time as beneficial change increase over time.More male participants may experience outcome change in autonomy than female participants.Urgency for change and personal needs/priorities may contribute to growth experiences.

Using the COM-B Model and Theoretical Domains Framework to Understand Workplace Disclosure Experiences, Influencers, and Needs Among Autistic Young Adults.

For autistic young adults, deciding whether to disclose their autism at work is complex. Minimal research explores what they need to support disclosure and what influences decisions. To understand disclosure needs and influencers, we explored (i) disclosure decision-making experiences and (ii) perceptions of the disclosure process among autistic young adults. We conducted focus groups using the Capability, Opportunity, Motivation, Behaviour Model and Theoretical Domains Framework (TDF). We analyzed data from 23 participants and mapped onto the TDF to develop five themes: (1) workplace environment, (2) perceptions of disclosure outcomes, (3) personal factors and identity, (4) disclosure-related ambitions and determination, and (5) know-hows of disclosure. Future work should prioritize developing disclosure decision-making supports and investigate employer roles in fostering inclusive workplaces.

Development and Usability Testing of a Web-Based Workplace Disability Disclosure Decision Aid Tool for Autistic Youth and Young Adults: Qualitative Co-design Study.

BACKGROUND: Deciding whether and how to disclose one's autism at work is complex, especially for autistic youth and young adults who are newly entering the labor market and still learning important decision-making and self-determination skills. Autistic youth and young adults may benefit from tools to support disclosure processes at work; however, to our knowledge, no evidence-based, theoretically grounded tool exists specifically for this population. There is also limited guidance on how to pursue the development of such a tool in collaboration with knowledge users. OBJECTIVE: This study aimed to co-design a prototype of a disclosure decision aid tool with and for Canadian autistic youth and young adults, explore the perceived usability of the prototype (usefulness, satisfaction, and ease of use) and make necessary revisions, and outline the process used to achieve the aforementioned objectives. METHODS: Taking a patient-oriented research approach, we engaged 4 autistic youths and young adults as collaborators on this project. Prototype development was guided by co-design principles and strategies, and tool content was informed by a previous needs assessment led by our team, the autistic collaborators' lived experiences, considering intersectionality, research on knowledge translation (KT) tool development, and recommendations from the International Patient Decision Aid Standards. We co-designed a web-based PDF prototype. To assess perceived usability and experiences with the prototype, we conducted 4 participatory design and focus group Zoom (Zoom Video Communications) sessions with 19 Canadian autistic youths and young adults aged 16 to 29 (mean 22.8, SD 4.1) years. We analyzed the data using a combined conventional (inductive) and modified framework method (deductive) analysis to map the data onto usability indicators (usefulness, satisfaction, and ease of use). Grounded in participants' feedback, considering factors of feasibility and availability of resources, and ensuring tool fidelity, we revised the prototype. RESULTS: We developed 4 categories pertaining to the perceived usability of and participant experiences with the prototype: past disclosure experiences, prototype information and activities, prototype design and structure, and overall usability. Participant feedback was favorable and indicative of the tool's potential impact and usability. The usability indicator requiring the most attention was ease of use, which was prioritized when revising the prototype. Our findings highlight the importance of engaging knowledge users throughout the entire prototype co-design and testing processes; incorporating co-design strategies and principles; and having content informed by relevant theories, evidence, and knowledge users' experiences. CONCLUSIONS: We outline an innovative co-design process that other researchers, clinicians, and KT practitioners may consider when developing KT tools. We also developed a novel, evidence-based, and theoretically informed web-based disclosure decision aid tool that may help autistic youth and young adults navigate disclosure processes and improve their transitional outcomes as they enter the workforce.

Autonomy, self-realization, and psychological empowerment: a prospective mixed methods study of the effects of residential immersive life skills programs for youth with physical disabilities.

PURPOSE: To examine changes in self-determination associated with youth participation in residential immersive life skills (RILS) programs. METHOD: 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. RESULTS: 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. CONCLUSIONS: 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 disabilitiesYouth reported changes in their level of autonomy after attending residential immersive life skills programs, as well as feeling more confident in living on their ownResidential immersive life skills programs can contribute to youth's understanding of themselves as they transition to adulthood.

Understanding the benefits and challenges of outpatient virtual care during the COVID-19 pandemic in a Canadian pediatric rehabilitation hospital.

PURPOSE: The evolving virtual health care experience highlights the potential of technology to serve as a way to enhance care. Having virtual options for assessment, consultation and intervention were essential during the coronavirus (COVID-19) pandemic, especially for children with disabilities and their families. The purpose of our study was to describe the benefits and challenges of outpatient virtual care during the pandemic within pediatric rehabilitation. METHODS: This qualitative study, part of a larger mixed methods project, involved in-depth interviews with 17 participants (10 parents, 2 youth, 5 clinicians) from a Canadian pediatric rehabilitation hospital. We analyzed the data using a thematic approach. RESULTS: Our findings demonstrated three main themes: (1) benefits of virtual care (e.g., continuity of care, convenience, stress reduction and flexibility, and comfort within the home environment and enhanced rapport); (2) challenges related to virtual care (e.g., technical difficulties and lack of technology, environmental distractions and constraints, communication difficulty, and health impacts); and (3) advice for the future of virtual care (i.e., offering choice to families, enhanced communication and addressing health equity issues). CONCLUSIONS: Clinicians and hospital leaders should consider addressing the modifiable barriers in accessing and delivering virtual care to optimize its effectiveness.

Families are invested in access to virtual care appointments and can benefit from clear communication about choices regarding appointment options and supports in how to access and use technology for equitable access to care.Hospitals should aim to provide clinicians with an appropriate workspace (i.e., private, quiet with adequate room to demonstrate what they need to do), equipment and technology to have virtual care appointments.Current understanding of virtual care delivery suggests a tailored approach, with some types of appointments, such as follow-ups or check-ins, more suited to this modality than other more hands-on therapy.