Unrealized potentials of patient participation in primary healthcare service development : A qualitative study of collaboration, context, and impact
Abstract
The thesis contributes new knowledge about patient participation in primary healthcare service development from three perspectives: healthcare professionals, patient representatives, and internal facilitators. It focuses on the collaboration among these parties and its impact. Each perspective is covered in one article. The thesis also includes a scoping review of the research literature on the impact of adult patient participation in developing health services.
This thesis shifts the focus from the binary view of power dynamics between professionals and representatives to emphasize relational dynamics. Aiming to strengthen the practice of involvement, the thesis seeks to explore the following overall research: What meaning can the collaboration in health service development with patient participation have for healthcare professionals, patient representatives, and internal facilitators, and what impact can their collaboration have?
The thesis design is qualitative and explorative and represents a collaborative effort. The research team included a co-researcher with experiential knowledge and a mixed advisory panel of three patient representatives and three healthcare professionals. The participants were purposely sampled from four Norwegian municipalities that practice patient participation in primary healthcare service development. The municipalities are located in different parts of Norway and have different population sizes, and different types and amounts of experience conducting patient participation in health service development.
Four focus groups with a total of 23 patient representatives, four focus groups with a total of 26 healthcare professionals, and 12 individual interviews with six facilitators and six representatives were conducted locally. The professionals and facilitators had different administrative and clinical positions within somatic and mental healthcare services and represented 11 professional backgrounds. The representatives were affiliated with 15 patient organizations representing conditions such as autism spectrum disorders, cancer, dementia, hearing impairment, heart and lung disease, osteoporosis, metabolic challenges, stroke, and rheumatoid arthritis. The data were analyzed by applying a thematic analysis.
The thesis highlights the following: Limited knowledge of patient participation at the service level among leadership and professionals can reduce the focus on and resources for participation – and the degree of involvement. The collaboration between professionals and representatives is complex, which indicates a need for competent facilitators. However, there are few of them, and they have limited support from leadership. The municipality generally seems ill-equipped for participation in health service development. This thesis thus highlights the need for a national and local political discussion about prioritization and implementation of patient participation in a primary healthcare context.
Paper I: Sandvin Olsson, A. B., Strom, A., Haaland-Overby, M., Fredriksen, K., & Stenberg, U. (2020). How can we describe impact of adult patient participation in health-service development? A scoping review. Patient Education and Counseling, 103(8), 1453-1466. https://doi.org/10.1016/j.pec.2020.02.028
Paper II: Sandvin Olsson, A. B., Haaland-Øverby, M., Stenberg, U., Slettebø, T., & Strøm, A. (2022). Primary healthcare professionals' experience with patient participation in healthcare service development: A qualitative study. PEC Innovation, 1, 100068. https://doi.org/10.1016/j.pecinn.2022.100068
Paper III: Sandvin Olsson, A. B., Stenberg, U., Haaland-Øverby, M., Slettebø, T., & Strøm, A. (2023). Enabling Primary Healthcare Service Development with Patient Participation: A Qualitative Study of the Internal Facilitator Role in Norway. Primary Health Care Research and Delivery, 24, e57. https://doi.org//10.1017/S1463423623000488
Paper IV: Sandvin Olsson, A. B., Haaland-Øverby, M., Stenberg, U., Slettebø, T., & Strøm, A. Contextual Factors that Matter for Patient Representatives when Involved with Developing Primary Healthcare Services. Under review.
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