Background: A growing population of youth with medical complexity (YMC) are surviving into adulthood and being forced to transition from pediatric to adult health care. YMC and their families face significant challenges during this transition, putting them at risk for service fragmentation, inadequate care, and negative health outcomes. Existing interventions to support transition continue to have limited benefits for this group, demonstrating a clear need for tailored supports, informed by the perspectives of YMC and their families. Currently, these families’ transition experiences are poorly understood in the Canadian context. Thus, the aim of this dissertation was to holistically examine the experiences of families of YMC with the transition to adult care in Ontario.
Methods: This sandwich thesis consists of: 1) a meta-ethnography synthesizing qualitative literature about the experiences of YMC and their families during the transition to adulthood; and 2) a patient-oriented qualitative case study exploring: i) how families of YMC adapt to the transition to adult care; ii) the influence of contextual factors; and iii) family recommendations for support.
Findings: Transition impacts nearly all aspects of the youth’s and family’s lives. Families encounter numerous challenges in their pursuit of a good future and they “survive” by advocating, making sacrifices, and persisting despite inequities. Furthermore, families’ experiences are shaped by the complex interplay of personal and environmental factors.
Conclusion: Implications for nursing practice, health care provider education, and health policy focus on: supporting nurses to provide instrumental and psychological support to families; building capacity in primary care (e.g., through nurse-led models of care); training health professionals on complex care management; and advocating for system-wide strategies to improve health care transition. Future research should prioritize the co-design and evaluation of interventions to address families’ information and emotional needs and training initiatives to facilitate the implementation of recommendations into practice. / Thesis / Doctor of Philosophy (PhD) / Youth with medical complexity have serious illness and intensive care needs. Recent advances in technology have led to more of these youth living into adulthood and moving to adult health care. The transition to adult care puts their health at risk and is highly stressful for their families. Currently, little is known about how these families cope with this transition and what help they need. This thesis aims to address these gaps by reviewing existing research and interviewing youth and families about their experiences. Findings show that the transition to adult care greatly affects many parts of the youth’s and family’s lives. Families cope with these changes by advocating, making sacrifices, and persisting in the face of inequities. Study findings can help guide nurses, other health care providers, and policy makers to better support these youth and families in their transition to adult care.
| Identifer | oai:union.ndltd.org:mcmaster.ca/oai:macsphere.mcmaster.ca:11375/29908 |
| Date | January 2024 |
| Creators | Li, Lin |
| Contributors | Strachan, Patricia, Health Sciences |
| Source Sets | McMaster University |
| Language | English |
| Detected Language | English |
| Type | Thesis |
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