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Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study.
- Source :
-
Health Expectations . Jun2019, Vol. 22 Issue 3, p373-384. 12p. 5 Charts. - Publication Year :
- 2019
-
Abstract
- Background: The Clinical Understanding and Research Excellence in ME/CFS group (CureME) at the London School of Hygiene & Tropical Medicine has supported and undertaken studies in immunology, genetics, virology, clinical medicine, epidemiology and disability. It established the UK ME/CFS Biobank (UKMEB), which stores data and samples from three groups: participants with ME/CFS, Multiple Sclerosis (MS) and healthy controls. Patient and public involvement have played a central role from its inception. Aim: To explore the views of participants with ME/CFS and MS on CureME research findings, dissemination and future biomedical research priorities. Method: Five ME/CFS and MS focus groups were conducted at two UK sites. Discussions were transcribed and analysed thematically. Results: A total of 28 UKMEB participants took part: 16 with ME/CFS and 12 with MS. Five themes emerged: (a) Seeking coherence: participants' reactions to initial research findings; (b) Seeking acceptance: participants explore issues of stigma and validation; (c) Seeking a diagnosis: participants explore issues around diagnosis in their lives; (d) Seeking a better future: participants' ideas on future research; and (e) Seeking to share understanding: participants' views on dissemination. Focus groups perceived progress in ME/CFS and MS research in terms of "putting together a jigsaw" of evidence through perseverance and collaboration. Conclusion: This study provides insight into the emotional, social and practical importance of research to people with MS and ME/CFS, suggesting a range of research topics for the future. Findings should inform biomedical research directions in ME/CFS and MS, adding patients' voices to a call for a more collaborative research culture. [ABSTRACT FROM AUTHOR]
- Subjects :
- *CHRONIC fatigue syndrome
*DIFFUSION of innovations
*FOCUS groups
*HOPE
*INTERPROFESSIONAL relations
*INTERVIEWING
*MEDICAL research
*MULTIPLE sclerosis
*PRIORITY (Philosophy)
*RESEARCH funding
*PSYCHOLOGICAL resilience
*SOCIAL stigma
*PATIENT participation
*QUALITATIVE research
*JUDGMENT sampling
*THEMATIC analysis
*PSYCHOLOGY of human research subjects
*DATA analysis software
RESEARCH evaluation
Subjects
Details
- Language :
- English
- ISSN :
- 13696513
- Volume :
- 22
- Issue :
- 3
- Database :
- Academic Search Index
- Journal :
- Health Expectations
- Publication Type :
- Academic Journal
- Accession number :
- 136749614
- Full Text :
- https://doi.org/10.1111/hex.12857