Bridging Pediatric and Adult Rehabilitation Services for Young Adults With Childhood-Onset Disabilities: Evaluation of the LIFEspan Model of Transitional Care

Kingsnorth, Shauna; Lindsay, Sally; Maxwell, Joanne; Hamdani, Yani; Colantonio, Angela; Zhu, Jingqin; Bayley, Mark; Macarthur, Colin

doi:10.3389/fped.2021.728640

Cited by 11 publications

(7 citation statements)

References 34 publications

(64 reference statements)

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“…Youth who followed a mainstream pathway such as postsecondary education similarly faced challenges in navigating the ableist system. Despite mounting research and policy recommendations over the past two decades ( Kingsnorth et al, 2021 ; Lilly et al, 2019 ), the transition to adulthood still felt rough and alienating for disabled youth and families in Ontario, Canada.…”

Section: Discussionmentioning

confidence: 99%

Transitions Theatre: Creating a Research-Based Reader’s Theatre With Disabled Youth and Their Families

Seko

Curran

et al. 2022

Qual Health Res

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Transition to adult life can be a challenging time for disabled youth and their families. This article describes the collaborative creation of Transitions Theatre, a research-based reader’s theatre activity based on narrative interviews with eight disabled youth (aged 17–22) and seven parents. Analysis of these interviews generated two opposing yet interrelated themes. On one hand, youth and families felt lost in transition facing multiple gaps in healthcare, financial support, education, and opportunities for social participation after having “aged out” of the pediatric system. On the other hand, they started cripping “normal” adulthood to envision more inclusive futures wherein disabilities are understood as integral to society. These two themes were transformed into two reader’s theatre scripts, one featuring a youth, the other featuring a parent. Seven youth and four parents (six of them were original interview participants) then participated in a Transitions Theatre workshop to read the scripts together and discuss the authenticity and relatability of the scripts. Participant feedback suggested that the reader’s theatre method was effective in sharing findings with research participants and stimulating a critical dialogue on how to (re)imagine transition to adulthood. We discuss the importance of implementing inclusive design strategies to make reader’s theatre accessible to participants with diverse abilities and preferences.

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Section: Discussionmentioning

confidence: 99%

Transitions Theatre: Creating a Research-Based Reader’s Theatre With Disabled Youth and Their Families

Seko

Curran

et al. 2022

Qual Health Res

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“…In Canada, a national guideline for transition calls for the removal of barriers to inter-agency collaboration to promote family-centred, inclusive support amenable to personal choice and health conditions ( 2 ). A small but growing body of evidence suggests that a coordinated, “warm” handover to adult service providers can increase continuity of care and health service utilization ( 7 , 8 ). Continuity of health service utilization reportedly reduced intensive re-engagement in the health system after reaching a point of crisis ( 8 ).…”

Section: Introductionmentioning

confidence: 99%

Transitions Pop-ups: Co-designing client-centred support for disabled youth transitioning to adult life

Seko,

Oh,

Thompson

et al. 2024

Front. Rehabil. Sci.

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BackgroundWhen transitioning to adulthood, youth with disabilities and their families face many service gaps. Successful inter-agency collaborations can promote family-centred, inclusive transition support amenable to personal choice and health conditions. This paper reports the 3-year co-design process of an innovative transition service that links a pediatric hospital and adult service agencies and addresses key areas of transition preparedness with joint accountability.MethodsA team of pediatric rehabilitation professionals, adult service providers, young adults with disabilities and their families, and researchers engaged in a co-design process over three years. Following a design thinking (DT) framework, the team went through an iterative process of Empathize. Define, Ideation, Prototyping, and Testing phases. The trial-and-error process allowed for deeper reflection and an opportunity to pivot the design.ResultsThe co-design yielded Transitions Pop-ups, a nimble service model that can “pop up” at critical times and places to meet clients’ urgent and emergent transition-related needs. Two pilot sessions were conducted at the testing phase with adult service agencies. The final model included five key elements: (1) community partnership; (2) targeted information sharing; (3) peer mentoring; (4) action (on-the-spot completion of a key transition task/activity such as submitting an adult funding application); and (5) warm handover.ConclusionThe co-design process highlighted the importance of open communication and iterative prototype testing as a means for trialing new ideas and clarifying the intent of the project. The DT framework optimally facilitated the co-development of a contextually relevant and sustainable service model for pediatric rehabilitation clients and families.

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“…The literature has repeatedly suggested that there is a considerable gap between pediatric and adult services that hinders developmentally appropriate care provision. [1][2][3] Several researchers have indicated that suboptimal transitions can increase the risk of preventable complications and hospital admissions due to nonadherence, inadequate health management, and the loss of follow-up care by adult health providers. [4][5][6][7] With increased survival rates for persons with severe medical conditions and disabilities, the focus of transition support in pediatric services has extended from clinical services to multiple aspects of life transitions.…”

Section: Introductionmentioning

confidence: 99%

“…[4][5][6][7] With increased survival rates for persons with severe medical conditions and disabilities, the focus of transition support in pediatric services has extended from clinical services to multiple aspects of life transitions. 2,8 Following a paradigm shift toward client-and family-centered care, 9 transition to adulthood services has gradually encompassed not only clinical transfer but also additional vocational, educational, and social needs of youth with special health care needs (i.e., young clients) and their family members/caregivers. [10][11][12] A smooth, coordinated transition to adult care requires an open, ongoing collaboration among a variety of health care and social service providers, young clients, and their families.…”

Section: Introductionmentioning

confidence: 99%

Transitions Theatre: An Arts-Informed Interprofessional Education Workshop

Seko¹,

Oh²,

Goberdhan³

et al. 2023

Preprint

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Introduction: Transition from pediatric to adult care has significant implications for health outcomes in youth with special health care needs. To optimally support the transition, health care and social service providers must work collaboratively with youth and families in service planning, implementation, and evaluation. Based on interviews with 15 youth and their families, we developed an arts-informed interprofessional education activity titled Transitions Theatre using the method of readers’ theater. Methods: Three educators with lived experience (one former pediatric rehabilitation client and two parents of youth with special health care needs) and three academic/clinical educators codesigned the transitions. We conducted four online workshops (14–20 participants each). Results: A total of 67 people participated: 59 students from 11 health disciplines and seven postlicensure clinicians and one trainee from five disciplines (e.g., occupational therapy, life skills coaching, early childhood education). Twenty-six participants answered both pre- and postworkshop surveys and reported a positive shift in their understanding of client and family perspectives, their roles in transition support, and other providers’ roles in transition support. After the workshop, learners felt more confident with transition support and interprofessional collaboration. The perspectives of the educators with lived experience aligned with the theater scripts and enhanced learners’ empathetic engagement with the topic. Discussion: The evidence-based teaching approach of readers’ theater and our coteaching model offered learners a unique opportunity to learn about the challenges clients and their families face at the time of transition to adulthood and identify their role in an interprofessional transition support.

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Bridging Pediatric and Adult Rehabilitation Services for Young Adults With Childhood-Onset Disabilities: Evaluation of the LIFEspan Model of Transitional Care

Cited by 11 publications

References 34 publications

Transitions Theatre: Creating a Research-Based Reader’s Theatre With Disabled Youth and Their Families

Transitions Theatre: Creating a Research-Based Reader’s Theatre With Disabled Youth and Their Families

Transitions Pop-ups: Co-designing client-centred support for disabled youth transitioning to adult life

Transitions Theatre: An Arts-Informed Interprofessional Education Workshop

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