ArticleBrain and behavior2023
Lived experience of persons with multiple sclerosis: A qualitative interview study.
Article in Brain and behavior, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
5 citing papers in PubMed.
- Patient Preferences Towards Plain Language Resources During their Multiple Sclerosis Journey: A Qualitative Interview Study.The patient · 2026Article
- Exploration of suicidal thinking in people with multiple sclerosis: an interpretative phenomenological analysis.Health psychology and behavioral medicine · 2026Article
- Experiences of disease-modifying treatments in patients with multiple sclerosis - a qualitative study.BMC neurology · 2025Article
- Exploring Different Levels of Contact Frequency in Multiple Sclerosis Care.Brain and behavior · 2025Article
- Lived experience of persons with multiple sclerosis: A qualitative interview study.Brain and behavior · 2023Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionMultiple 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
methodsA qualitative interview study was conducted with both purposeful and random sampling strategies, resulting in 10 interviews. Data were analyzed using inductive thematic content analysis.
resultsThe 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.
conclusionThe 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.
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