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UBC Theses and Dissertations

Moving forward : a qualitative exploration of the transition to adult healthcare services for young persons with medical complexity and their caregivers Pirker, Caitlyn Anne


Children and youth with medical complexity represent a distinct pediatric population characterized by the interplay of medical, functional and psychosocial impacts associated with complex chronic conditions and a high utilization of healthcare services. As this population reaches adulthood, they must transition from pediatric healthcare services to adult healthcare services. As young persons with medical complexity and their parent(s)/caregiver(s) move through the transition to adult healthcare services they navigate developmental and role transitions which coincide with the multifaceted transition of medical specialists, allied health professionals and axillary supports. Guided by principles of relational autonomy and transitions theory, I explore the relational, community and structural factors that may influence health transitions to better inform current practice and policy supporting this population as they transition to adult services. My study utilizes an interpretive description design to explore the transition experience of young persons with medical complexity along with their parent/caregivers. Semi-structured interviews were conducted with six young persons who met inclusion criteria for medical complexity based on the operational definition proposed by Children’s Healthcare Canada (2018). Semi-structured interviews were also conducted with four parent/caregivers of young persons with medical complexity, who supported the ongoing medical, functional and care coordination for their child during the transition to adult healthcare services. Data analysis involved inductive thematic analysis and presented both interpersonal and structural factors holding influence on the roles and responsibilities assumed by young persons and parent/caregivers as they moved through transition. Roles and responsibilities assumed by participants during transition included: Care management/coordination, navigating changing relationships, identifying/problem solving gaps in service, advocacy, and planning for the future. Interpersonal factors included relationships with family, healthcare providers and community/social supports. Structural factors included access to health services, social services, and related funding. My findings address key priorities to consider when supporting the transition of young persons and their parent/caregiver to support inclusion across systems of care when entering the adult system. Moving forward, my study is well suited to help inform transition practices from a nursing lens and may also contribute to further policy and research priorities on this expanding area of practice and research.

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