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. 2023 Jul;13(7):e3104.
doi: 10.1002/brb3.3104. Epub 2023 May 29.

Lived experience of persons with multiple sclerosis: A qualitative interview study

Sofia Persson  1   2 , Ann-Christine Andersson  1   3 , Boel Andersson Gäre  1   2 , Bertil Lindenfalk  1 , Jonas Lind  4   5
Affiliations

Lived experience of persons with multiple sclerosis: A qualitative interview study

Sofia Persson et al. Brain Behav. 2023 Jul.

Abstract

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.

Keywords: coproduction; multiple sclerosis care; patient experience; quality improvement.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

FIGURE 1
FIGURE 1
Schematic of the different phases of the sampling process for the interview study, based on a former quantitative study that identified four segments of utilization of healthcare services (Lind et al., 2022).
See this image and copyright information in PMC

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