How Families Adapt When Youth with Medical Complexity Transition to Adult Care
Author Information
Author(s): Li Lin, Nancy Carter, Jan Willem Gorter, Linda Till, Marcy White, Patricia H. Strachan
Primary Institution: McMaster University
Hypothesis
How do families of youth with medical complexity adapt to challenges and opportunities posed by the youth’s transition to adulthood and transfer to adult services?
Conclusion
Families of youth with medical complexity face significant challenges during the transition to adult care, requiring them to adapt through advocacy, sacrifice, and persistence.
Supporting Evidence
- Families prioritize health, safety, participation, and autonomy for the youth’s future.
- Families fear their youth's health will suffer due to lack of trained adult providers.
- The culture of the adult system leaves families feeling unsafe and unwelcome.
- Caregivers weather the effects of prolonged, intense caregiving and unpredictability.
- Families adapt to transition through survival, sacrifice, persistence, and reframing.
Takeaway
Families of kids with serious health issues have to work really hard to make sure their kids get the care they need when they grow up, often facing many challenges along the way.
Methodology
A qualitative explanatory case study was conducted with 17 participants from 11 families, using semi-structured interviews and thematic analysis.
Potential Biases
Potential bias in participant selection as some families declined to participate due to previous negative experiences with research.
Limitations
Participants self-identified their medical complexity, which may lead to inaccuracies, and the study may not represent the experiences of all families due to selection bias.
Participant Demographics
Participants included 11 families with youth aged 16-30, primarily mothers as caregivers, with a mix of urban and rural backgrounds.
Digital Object Identifier (DOI)
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