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2023 (English)In: Brain and Behavior, E-ISSN 2162-3279, Vol. 13, no 7, article id e3104Article in journal (Refereed) Published
Abstract [en]
INTRODUCTION: Multiple sclerosis (MS) is a chronic autoimmune disease with a substantial impact on quality of life and functional capability. The prognosis of MS has changed over time due to the development of increasingly effective therapies. As the knowledge and perceptions of persons living with chronic conditions increasingly have been acknowledged, it has become important to understand lived experiences with a focus on everyday events and experiences as a way of knowing and interpreting the world. Exploring context-specific lived experiences as a source of knowledge about the disease and care may contribute to more precision in designing care services. The aim of this study was to explore the lived experience of persons living with MS in a Swedish context.
MATERIALS AND METHODS: A qualitative interview study was conducted with both purposeful and random sampling strategies, resulting in 10 interviews. Data were analyzed using inductive thematic content analysis.
RESULTS: The analysis generated 4 overarching themes with 12 subthemes, the 4 themes were: perspectives on life and health, influence on everyday life, relations with healthcare, and shared healthcare processes. The themes are concerned with the patients' own perspectives and context as well as medical and healthcare-related perspectives. Patterns of shared experiences were found, for example, in the diagnosis confirmation, future perspectives, and planning and coordination. More diverse experiences appeared concerning relations with others, one's individual requirements, symptoms and consequences, and knowledge building.
CONCLUSION: The findings suggest a need for a more diverse and coproduced development of healthcare services to meet diverse needs in the population with greater acknowledgement of the person's lived experience, including consideration of the complexity of the disease, personal integrity, and different ways of knowing. Findings from this study will be further explored together with other quantitative and qualitative data.
Place, publisher, year, edition, pages
John Wiley & Sons, 2023
Keywords
coproduction, multiple sclerosis care, patient experience, quality improvement
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:hj:diva-60518 (URN)10.1002/brb3.3104 (DOI)000995986100001 ()37246453 (PubMedID)2-s2.0-85160921603 (Scopus ID)GOA;;882813 (Local ID)GOA;;882813 (Archive number)GOA;;882813 (OAI)
Funder
Futurum - Academy for Health and Care, Jönköping County Council, Sweden
2023-05-302023-05-302024-09-04Bibliographically approved