Applying conceptual frameworks to study healthcare transition

Background: Although research in healthcare transition is not novel, youth with chronic health conditions (YCHC) and parents still struggle with this complex process. Currently, there is limited theoretically-driven studies to inform transition research. The key foundation of this thesis is on the integration and application of theories and conceptual frameworks to studying the complexities of the transition process to inform research on a conceptual level. Purpose: Three study objectives were: 1) to gain a better understanding of the experiences of YCHC, parents, and healthcare providers with self-management during the transition process; 2) explore theoretical frameworks to guide research in transition and inform the planning and delivery of holistic transition services that is developmentally appropriate and culturally sensitive; and 3) to identify strategies to facilitate knowledge mobilization in transition. Methods: This “sandwich thesis” includes four individual scholarly works (Chapters 2-5) positioned between the introduction (Chapter 1) and the conclusions (Chapter 6). The Knowledge to Action (KTA) framework was used to framed all of my four scholarly works together. Chapter 2 was a qualitative study to examine the collective experiences YCHC, parents, and healthcare providers with self-management during transition. Chapter 3 was a critical appraisal of the literature to explored the potential application of acculturation theory in transition through the use of a clinical vignette. Chapter 4 was a scoping review about the current use of the ICF and transition research and practice. Chapter 5 was a demonstration project with the primary aim of working with youth (i.e. university students with and without a disability) and researchers to identify engagement strategies in research to develop partnerships to facilitate knowledge mobilization. Results: Key findings of Chapter 2: i) the process of self-management is interconnected and interdependent between YCHC, parents, and healthcare providers, and ii) results began to uncover cultural nuances between pediatric and adult healthcare. Key findings of Chapter 3: i) acculturation theory provides a concrete conceptual framework to guide thinking about the process of change within an individual with a change in culture to another; and ii) acculturation can become a natural framework for health systems practitioners when integrated into clinical practice frameworks. Key findings of Chapter 4: i) the ICF broadens our view on health to include personal and environment factors, and ii) the ICF enhances multidisciplinary communication and collaboration. However, the ICF is not without limitation. Specifically, there are limited descriptions around personal and environmental factors and the underlying processes, defining differences between the domains of activity and participation, and the ICF’s static nature which does not address change over time. Key findings of Chapter 5: five engagement strategies: 1) creating a physical or virtual hub with updated information or updating current websites to ensure usability and accessibility (e.g. for course selection), 2) hosting “speed dating” events between students and faculty/researchers to enhance communication and knowledge exchange, 3) hosting monthly lectures/workshops/webinars, 4) capacity building via emailing lists for new opportunities, and 5) peer mentoring to connect stakeholders within the University and Hamilton communities. Conclusions: Synthesis of the knowledge from this thesis contributes to the thinking and doing of transition research. Specifically, acculturation theory (a social science and psychology theory) and the International Classification of Functioning, Disability, and Health (ICF) (a bio-psycho-social theory) are offered as complementary conceptual frameworks to inform transition research. Stakeholder involvement in transition research is critical in facilitating knowledge mobilization, however, researchers need to consider the challenges of research partnership with YCHC. It is recommended to explore and assess opportunities for YCHC to have experiences starting in childhood and through adolescence; these experiences can assist in building YCHC’s capacity to assume adult roles and responsibilities for self-management.

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