Facilitating virtual social connections for youth with disabilities: lessons for post-COVID-19 programming.

PURPOSE: Social connections are essential for the development of life skills for youth. Youth with disabilities have long faced barriers to meaningful social connections. The onset of COVID-19 increased barriers to social connections for all youth, and also led to enhanced use of virtual platforms in paediatric rehabilitation programming. Harnessing this opportunity, service providers created a suite of online programs to foster social connections and friendships. The current study explores participant and service provider experiences of such programs. METHODS: This qualitative descriptive study used interviews and focus groups to explore how youth with disabilities (n = 8), their parents (n = 7), and service providers (n = 13) involved in program development and delivery experienced the programs, the accessibility of the virtual platforms, and their social connections in relation to program participation. RESULTS: Participants were satisfied with the programs' content, accessibility and ability to meet their social needs. Qualitative themes included facilitating social connections, accessibility of virtual spaces, and recommendations for future virtual programming. DISCUSSION: For youth with disabilities who have been historically marginalized in social spheres, the newly ubiquitous infrastructure regarding virtual programming must be supported and enhanced. A hybrid approach involving virtual/in-person options in future programming is recommended.

Youth with disabilities can benefit from social connections on virtual platforms in terms of physical access to social spaces and opportunities to communicate in alternative waysFor some youth with disabilities, virtual social connections can be the only feasible and readily available option for reducing social isolation due to physical barriers to accessWhen offering virtual program options, service providers should consider the various benefits of connecting with the physical, communication-based, interaction-based, access-based and other barriers to virtual connection.

Delivery and evaluation of simulations to promote authentic and meaningful engagement in childhood disability research.

BACKGROUND: In 2019, our interdisciplinary team of researchers, family members, and youth co-designed four simulation training videos and accompanying facilitation resources to prepare youth, family members, trainees, and researchers to build the knowledge and skills to engage in patient-oriented research (POR) authentically and meaningfully. Videos covered challenges in aspects of the research process including (1) forming a project team; (2) identifying project objectives and priorities; (3) agreeing on results; and (4) carrying out knowledge translation. METHODS: The purpose of the study was to deliver four simulation training videos across 2 two-hour facilitated workshops with researchers, trainees, and family partners. We evaluated whether the training videos and facilitated discussion of the simulations helped to improve knowledge and attitudes about authentic and meaningful partnership in research and self-perceived ability to engage in POR. An explanatory sequential two-phase mixed methods design was used. Phase 1 (quantitative) included two training workshops and a pre/post-training survey. Phase 2 (qualitative) included two qualitative focus groups. Results of each phase were analyzed separately and then combined during interpretation. RESULTS: Sixteen individuals (including researchers/research staff, trainees, family members, clinicians) took part in this research study. Overall, participants were highly receptive to the training, providing high scores on measures of acceptability, appropriateness, and feasibility. While the training videos and facilitated discussion of the simulations were found to increase participants' knowledge and ability to engage in authentic and meaningful POR, we found no significant change in attitude or intent. Recommendations about the simulation content and delivery were provided to inform for future use. CONCLUSIONS: The simulations were found to be a positive and impactful way for collaborative research teams to build knowledge and ability to engage in authentic and meaningful POR. Recommendations for future work include covering different content areas with varying levels of nuance; and offering the training to stakeholders in a variety of roles, such as those higher-ranked academic positions.

In 2019, our team of researchers, family members, and youth worked together to design and develop four digitally recorded simulation videos that can be used to train youth, caregivers/families, trainees, and researchers to engage with each other in research so that all parties feel supported and valued. This paper describes how the four simulation videos were packaged in the training and then delivered to 16 participants (researchers, trainees, and caregivers/families). We used multiple ways to evaluate the videos and training, including a survey before and after the training, focus groups with participants after the training, and written reflections shared by the training facilitators after the training was finished. We found that the simulation videos increased participants' knowledge on engagement and their self-reported ability to engage in authentic and meaningful patient-oriented research. Participants rated their belief in engagement and their intent to engage in collaborative research highly at the pre-test and this remained consistent at the post-test. Participants liked that the simulations focused on challenges in research engagement and that the training was offered to researchers and family partners together. They provided valuable feedback on what we should change about the simulations, including the content, which should have less exaggerated lessons and to add more topics. They also suggested it would be helpful if stakeholders other than just the research team complete the training in the future, especially those who are in higher positions of academic power.

Perspectives of Youths on the Ethical Use of Artificial Intelligence in Health Care Research and Clinical Care.

Importance: Understanding the views and values of patients is of substantial importance to developing the ethical parameters of artificial intelligence (AI) use in medicine. Thus far, there is limited study on the views of children and youths. Their perspectives contribute meaningfully to the integration of AI in medicine. Objective: To explore the moral attitudes and views of children and youths regarding research and clinical care involving health AI at the point of care. Design, Setting, and Participants: This qualitative study recruited participants younger than 18 years during a 1-year period (October 2021 to March 2022) at a large urban pediatric hospital. A total of 44 individuals who were receiving or had previously received care at a hospital or rehabilitation clinic contacted the research team, but 15 were found to be ineligible. Of the 29 who consented to participate, 1 was lost to follow-up, resulting in 28 participants who completed the interview. Exposures: Participants were interviewed using vignettes on 3 main themes: (1) health data research, (2) clinical AI trials, and (3) clinical use of AI. Main Outcomes and Measures: Thematic description of values surrounding health data research, interventional AI research, and clinical use of AI. Results: The 28 participants included 6 children (ages, 10-12 years) and 22 youths (ages, 13-17 years) (16 female, 10 male, and 3 trans/nonbinary/gender diverse). Mean (SD) age was 15 (2) years. Participants were highly engaged and quite knowledgeable about AI. They expressed a positive view of research intended to help others and had strong feelings about the uses of their health data for AI. Participants expressed appreciation for the vulnerability of potential participants in interventional AI trials and reinforced the importance of respect for their preferences regardless of their decisional capacity. A strong theme for the prospective use of clinical AI was the desire to maintain bedside interaction between the patient and their physician. Conclusions and Relevance: In this study, children and youths reported generally positive views of AI, expressing strong interest and advocacy for their involvement in AI research and inclusion of their voices for shared decision-making with AI in clinical care. These findings suggest the need for more engagement of children and youths in health care AI research and integration.

A case study of a strategic initiative in pediatric rehabilitation transition services: An insiders' perspective on team principles and practices.

Aims: The aim was to describe an innovative initiative that took place in a pediatric rehabilitation hospital. The goal of this organization-wide strategic initiative, called the Transition Strategy, was to improve service delivery to children/youth with disabilities and their families at times of life transition. The research question was: What are the key elements that have contributed to the success of the Strategy, from the perspective of team members? The objectives were to describe: (a) the guiding principles underlying team functioning and team practices, (b) key enablers of positive team functioning, (c) the nature of effective team practices, and (d) lessons learned. Methods: A holistic descriptive case study was conducted, utilizing historical documents, tracked outcome data, and the experiences and insights of multidisciplinary team members (the authors). Reflecting an insiders' perspective, the impressions of team members were key sources of data. The perspectives of team members were used to generate key teamwork principles, enablers of team functioning, team practices, and key learnings. Findings and Discussion: Team members identified four guiding humanistic principles (respect, support, partnership, and open communication). These principles underpinned three novel practices that contributed to team effectiveness in the eyes of team members: supportive relational practices, human-centered co-design, and solution-focused communication. Key enablers were the relational style of leadership, and a team climate of innovation, autonomy, and trust, supported by the organizational vision. This team climate fostered a sense of psychological safety, thereby encouraging both experimentation and learning from failure. Conclusions: This article provides information for other healthcare organizations interested in understanding the Strategy's value and its implementation. It provides a practical example of how to adopt a humanistic approach to health care, leading to both innovative service development and thriving among team members.

Codesigning simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research.

BACKGROUND: Including youth with disabilities and their families as partners in childhood disability research is imperative but can be challenging to do in an authentic and meaningful way. Simulation allows individuals to learn in a controlled environment and provides an opportunity to try new approaches. The objectives of the research study were to (1) codesign a suite of simulations and facilitation resources and understand how stakeholders engaged in the codesign process; and (2) describe the principles of authentic and meaningful research engagement as identified by stakeholders. METHODS: Interdisciplinary stakeholder groups, including youth with disabilities, parents, researchers, and trainees, codesigned simulation training videos by developing shared storylines about challenges with research engagement that were then performed and digitally recorded with standardized patient actors. Two forms of data were collected: (1) observations via field notes and video recordings were analyzed to understand the codesign process; and (2) interviews were analyzed to understand principles of authentic and meaningful engagement. RESULTS: Four simulation training videos were developed, and topics included: (1) forming a project team; (2) identifying project objectives and priorities; (3) reviewing results; and (4) navigating concerns about knowledge translation. Thirteen participants participated in the simulation codesign; nine of whom consented to be observed in the codesign process and seven who completed follow up interviews. We identified two themes about authentic and meaningful engagement in research: (1) whether the invitation to engage on a project was authentic and meaningful or was extended to 'tick a box'; and (2) whether there were authentic and meaningful opportunities to contribute (e.g., valued contributions aligned with people's lived experience, skills, and interests) or if they only served as a 'rubber stamp'. Communication and expectations tied the 'tick box' and 'rubber stamp' themes together and underlie whether engagement was authentic and meaningful. CONCLUSIONS: For research engagement to be authentic and meaningful, researchers and families need to set clear expectations, build rapport, have tangible supports, use clear communication, and build time and space to work together. Future work will explore the utility of the simulations and whether they improve knowledge and attitudes about authentic and meaningful engagement in research.

Researchers, patients, and families who collaborate in childhood disability research can benefit from training on how to engage with each other authentically and meaningfully, i.e., where all parties feel supported and valued. We used a codesign approach to identify aspects of the research process where challenges might arise between researchers, patients, and families and then developed four videos with scenarios that mimic these challenges. Codesign is a collaborative approach in which different perspectives and relationships are prioritized while working to achieve a common aim. First, researchers, youth with disabilities, families, and trainees each identified challenges they had previously experienced in research engagement and used those to create one common scenario as the premise of each video. In follow up interviews, we asked a subset (7 people) of those who took part (13 people) about their experience in the co-design process and about what it means to engage in research where all parties feel supported and valued. Participants said that being invited to partner on research teams needed to be more than just a 'tick box' and even when invited onto research teams, they often lacked ways to contribute in a way where they felt valued. Engagement felt like a 'rubber stamp' when they were asked to contribute in a narrow way that did not align with the fullness of their lived experience, skills, and interests. Clear communication and mutual expectations were important for engagement to happen in a way that felt supportive and valuable. We suggest that researchers and families need to set clear expectations, build rapport, have tangible supports, use clear communication, and build time and space to work together.

Integrating lived experience into clinical practice: a case study of young peer providers in pediatric rehabilitation.

PURPOSE: Youth Facilitators (YFs) are peer service providers (SPs) with childhood-onset disabilities working in pediatric rehabilitation teams. This study explored the YF role focusing on what work YFs do, the perceived facilitators and challenges pertinent to the role integration process, and the evolution of the role over the study period. METHODS: A longitudinal, qualitative case study approach was used to gather data over a total period of 14 months through interviews, focus groups, workload logs, and observations. Data were analyzed using the method of thematic analysis. RESULTS: Two YFs, 23 SPs and two managers participated in the study. YFs' work included independent consultation, resource provision, referral making, and program co-facilitation. Analysis produced two contrasting themes. When viewed as a representative of clients, YFs were considered bringing client perspectives to care, adding credibility to clinical services, and empowering clients and families through role modeling. However, when viewed as a professional SP, their expertise was questioned due to role unclarity, limited generalizability of lived experience, and organizational limitations. CONCLUSIONS: Training tailored to local care contexts and organizational supports are needed to transform YFs' experiential knowledge into experiential expertise. We propose strategies for optimal integration of peer providers into clinical care teams.Implications for rehabilitationAs peer service providers with lived experience of disabilities, Youth Facilitators (YFs) have the potential to benefit pediatric rehabilitation services by facilitating empowerment in clients and families as they navigate through life transitions.The YF scope of practice and training should be adapted to fit with individual clinical teams and local care contexts to help YFs establish their experiential expertise in interdisciplinary teams.Establishing YF's core competencies (e.g., advocacy, coaching, and boundary setting skills) can help transform their experiential knowledge into experiential expertise.

Applying an ecological framework to understand transition pathways to post-secondary education for youth with physical disabilities.

PURPOSE: The purpose of this study was to explore the experiences of youth with physical disabilities and clinicians who support them in their transition to post-secondary education (PSE). Most research on transition to PSE has focused on youth with intellectual disabilities while there is a lack of research on youth with physical disabilities. METHODS: This study drew on 30 interviews with 20 youth with disabilities and 10 clinicians. We used Bronfrenbrenner's ecological framework to inform our analysis. RESULTS: Our results showed that there are several important individual skills that youth need to be successful in transitioning to PSE. Youth with disabilities experienced supports from peers and family that influence their transition to PSE. Several disability-specific issues (e.g., coping, self-care, disclosure, and accommodations) were often a barrier to transitioning to PSE. Clinicians and youth both reported that improved inter-professional collaboration and inter-agency partnerships were needed to enhance the transition experience. Societal attitudes (stigma and discrimination), policies, and the timing of transitions also influence youth's transition. CONCLUSION: Applying an ecological approach helped to provide a more holistic perspective of the PSE transitions and emphasizes the need to consider more than just preparing individuals but also where they are transitioned. Implications for rehabilitation Clinicians and educators should continue to promote the development of relevant life skills (e.g., self-advocacy, disclosure, and navigating public transportation) that youth need to succeed in post-secondary education. Clinicians should continue to educate and support youth regarding the process for disclosing their condition and how to request and set up accommodations in PSE. Clinicians should connect youth with disabilities to appropriate resources that can support them and continue to help them to set career goals and develop career plans. There is a critical need for improved inter-professional collaboration among clinicians providing transition services and inter-agency partnerships among high schools, disability organizations, and PSEs to enhance transition experiences for youth with disabilities.

Epilepsy: Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force.

The transition from a pediatric to adult health care system is challenging for many youths with epilepsy and their families. Recently, the Ministry of Health and Long-Term Care of the Province of Ontario, Canada, created a transition working group (TWG) to develop recommendations for the transition process for patients with epilepsy in the Province of Ontario. Herein we present an executive summary of this work. The TWG was composed of a multidisciplinary group of pediatric and adult epileptologists, psychiatrists, and family doctors from academia and from the community; neurologists from the community; nurses and social workers from pediatric and adult epilepsy programs; adolescent medicine physician specialists; a team of physicians, nurses, and social workers dedicated to patients with complex care needs; a lawyer; an occupational therapist; representatives from community epilepsy agencies; patients with epilepsy; parents of patients with epilepsy and severe intellectual disability; and project managers. Three main areas were addressed: (1) Diagnosis and Management of Seizures; 2) Mental Health and Psychosocial Needs; and 3) Financial, Community, and Legal Supports. Although there are no systematic studies on the outcomes of transition programs, the impressions of the TWG are as follows. Teenagers at risk of poor transition should be identified early. The care coordination between pediatric and adult neurologists and other specialists should begin before the actual transfer. The transition period is the ideal time to rethink the diagnosis and repeat diagnostic testing where indicated (particularly genetic testing, which now can uncover more etiologies than when patients were initially evaluated many years ago). Some screening tests should be repeated after the move to the adult system. The seven steps proposed herein may facilitate transition, thereby promoting uninterrupted and adequate care for youth with epilepsy leaving the pediatric system.

Exploring employment readiness through mock job interview and workplace role-play exercises: comparing youth with physical disabilities to their typically developing peers.

PURPOSE: To assess performance differences in a mock job interview and workplace role-play exercise for youth with disabilities compared to their typically developing peers. METHODS: We evaluated a purposive sample of 31 youth (15 with a physical disability and 16 typically developing) on their performance (content and delivery) in employment readiness role-play exercises. RESULTS: Our findings show significant differences between youth with disabilities compared to typically developing peers in several areas of the mock interview content (i.e. responses to the questions: "tell me about yourself", "how would you provide feedback to someone not doing their share" and a problem-solving scenario question) and delivery (i.e. voice clarity and mean latency). We found no significant differences in the workplace role-play performances of youth with and without disabilities. CONCLUSIONS: Youth with physical disabilities performed poorer in some areas of a job interview compared to their typically developing peers. They could benefit from further targeted employment readiness training. IMPLICATIONS FOR REHABILITATION: Clinicians should: Coach youth with physical disability on how to "sell" their abilities to potential employers and encourage youth to get involved in volunteer activities and employment readiness training programs. Consider using mock job interviews and other employment role-play exercises as assessment and training tools for youth with physical disabilities. Involve speech pathologists in the development of employment readiness programs that address voice clarity as a potential delivery issue.

An ecological approach to understanding barriers to employment for youth with disabilities compared to their typically developing peers: views of youth, employers, and job counselors.

PURPOSE: The purpose of this study is to explore the extent to which youth with physical disabilities encounter different barriers to finding employment compared to their typically developing peers. METHODS: This study draws on 50 qualitative in-depth interviews with a purposive sample of 31 youth (16 typically developing and 15 with a disability), and youth employers and job counselors knowledgeable about employment readiness among adolescents (n = 19). We utilize Bronfrebrenner's ecological framework to reveal the complex web of factors shaping youth's labor market outcomes. RESULTS: Only half of youth with a disability were working or looking for work compared to their peers. The findings show this was a result of different expectations of, and attitudes toward, youth with disabilities. For many youth with a disability, their peers, family and social networks often acted as a barrier to getting a job. Many youth also lacked independence and life skills that are needed to get a job (i.e. self-care and navigating public transportation) compared to their peers. Job counselors focused on linking youth to employers and mediating parental concerns. Employers appeared to have weaker links to youth with disabilities. System level barriers included lack of funding and policies to enhance disability awareness among employers. CONCLUSIONS: Youth with physical disabilities encounter some similar barriers to finding employment compared to their typically developing peers but in a stronger way. Barriers to employment exist at several levels including individual, sociostructural and environmental. The results highlight that although there are several barriers to employment for young people at the microsystem level, they are linked with larger social and environmental barriers. IMPLICATIONS FOR REHABILITATION: Clinicians working with youth should promote the development of skills that can lead to improved self-confidence and communication skills for youth. Encourage the development of extracurricular activities and social networking to build these skills and to make contacts for finding employment. Clinicians should support youth with disabilities and their parents in practicing independence skills (such as self-care, self-advocacy and navigating public transportation) they need prior to seeking employment. Vocational rehabilitation professionals should educate youth on how to disclose their condition to a potential employer, how to ask for ask for accommodations and how to market their abilities. Clinicians should help to link youth with disabilities to volunteer opportunities and to employers. Advocate for disability awareness training for employers regarding how to accommodate people with disabilities and the potential they offer in the workplace.

Revisiting therapy assumptions in children's rehabilitation: clinical and research implications.

PURPOSE: This commentary draws on a recent workshop hosted by the Canadian Children's Rehabilitation Research Network that brought together stakeholders to critically examine assumptions embedded in children's rehabilitation in order to advance current debates and suggest areas for further inquiry. METHOD: Six issues are discussed: (1) the wisdom of dichotomising 'fix' versus 'function'; (2) the ethics of it might help and it won't hurt' therapy approaches; (3) the emphasis on early intervention rather than a lifespan approach; (4) the challenges of providing care for new rehabilitation populations; (5) discrepancies between performance outcomes and patient satisfaction; and (6) innovative partnerships to support care transitions of adolescents and their families. RESULTS: Issues identified include: finding the right balance between therapies that focus on 'fixing' children versus enhancing function, judicious design of therapy programs as to not overburden children and families, adopting lifespan approaches to meet the needs of multiple 'paediatric' populations, cautious interpretation of measures and approaches that link well-being with physical performance, and the benefits of including parent and youth facilitators on children's rehabilitation teams. CONCLUSIONS: Ongoing debate, discussion and research are needed in each of these areas to ensure that rehabilitation services are enhancing the well-being of children and families.