Surviving transition: A qualitative case study on how families adapt as their youth with medical complexity transitions from child to adult systems of care

Abstract

BACKGROUND: A growing population of youth with medical complexity (YMC) are entering adult health care, education, and social systems in which their needs have been largely neglected. To better support YMC and their families, an understanding of how they manage the challenges of transitioning to adult services is needed. The aim of this study was to examine how families of YMC adapt to challenges and opportunities posed by the youth's transition to adulthood and transfer to adult services. METHODS: In partnership with two parent co-researchers and underpinned by complex adaptive systems and the Life Course Health Development framework, a qualitative explanatory case study was conducted. Seventeen participants from 11 families of YMC (aged 16-30) living in Ontario were recruited. Data from 21 semi-structured interviews were analyzed using reflexive thematic analysis and further refined through theory-driven analysis. Supplementary documents shared by participants were analyzed using directed content analysis. FINDINGS: Three overarching themes were generated. "Imagining, pursuing, and building a good future" describes families' priorities and visions for the youth's life as an adult. "Perils and obstacles of an imposed transition" examines challenges that families face in their pursuit of a good future. Lastly, "surviving the transition" describes how families are forced to advocate, make sacrifices, and persist in their efforts to adapt to transition. CONCLUSIONS: Pediatric providers should offer anticipatory guidance, partner with families in advocacy, and provide psychological support during transition. Education for adult and primary care providers should focus on developing professional competencies in the safe care of YMC, building capacity through clinical exposure, and creating culturally safe environments. Most importantly, YMC and their families need a model of care that can provide integrated, holistic, multidisciplinary care management across the lifespan.