“I Have Eight Different Files at Eight Different Places”: Perspectives of Youths and Their Family Caregivers on Transitioning from Pediatric to Adult Rehabilitation and Community Services

Author:

Kokorelias Kristina M.123ORCID,Lee Tin-Suet Joan2,Bayley Mark24,Seto Emily56,Toulany Alene7,Nelson Michelle L. A.58,Dimitropoulos Gina9,Penner Melanie10,Simpson Robert11,Munce Sarah E. P.2351012ORCID

Affiliation:

1. Department of Medicine, Sinai Health System and University Health Network, Toronto, ON, Canada

2. KITE, Toronto Rehabilitation Institute-University Health Network, Toronto, ON M5G 2A2, Canada

3. Department of Occupational Sciences and Occupational Therapy, Temetry Faculty of Medicine, University of Toronto, Toronto, ON M5S 1A8, Canada

4. Division of Physical Medicine and Rehabilitation, University of Toronto, Toronto, ON, Canada

5. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada

6. Center for Digital Therapeutics, Techna Institute, University Health Network, Toronto, ON, Canada

7. Department of Adolescent Medicine, the Hospital for Sick Children, Toronto, ON, Canada

8. Lunenfeld-Tanenbaum Research Institute, Sinai Health, Toronto, ON, Canada

9. Faculty of Social Work, University of Calgary, Calgary, AB T2N 1N4, Canada

10. Department of Pediatrics, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, University of Toronto, Toronto, ON, Canada

11. St. John’s Rehab Research Program at Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, North York, ON M2M 2G1, Canada

12. Rehabilitation Sciences Institute, Temetry Faculty of Medicine, University of Toronto, Toronto, ON, Canada

Abstract

Introduction: The number of young adults (youth) living with childhood-onset disabilities, and requiring transitional support to adult community and rehabilitation services, is increasing. We explored facilitators and barriers to accessing and sustaining community and rehabilitation services during the transition from pediatric to adult care. Methods: A qualitative descriptive study was conducted in Ontario, Canada. Data were collected through interviews with youth (n = 11) and family caregivers (n = 7). The data were coded and analyzed using thematic analysis. Results: Youth and caregivers face many types of transitions from pediatric to adult community and rehabilitation services, e.g., those related to education, living arrangements, and employment. This transition is marked by feelings of isolation. Supportive social networks, continuity of care (i.e., same care providers), and advocacy all contribute to positive experiences. Lack of knowledge about resources, changing parental involvement without preparation, and a lack of system responses to evolving needs were barriers to positive transitions. Financial circumstances were described as either a barrier or facilitator to service access. Conclusions: This study demonstrated that continuity of care, support from providers, and social networks all contribute markedly to the positive experience of transitioning from pediatric to adult services for individuals with childhood-onset disabilities and family caregivers. Future transitional interventions should incorporate these considerations.

Funder

AMS Healthcare Fellowship 2021

Publisher

MDPI AG

Subject

General Medicine

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