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Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies

Topcu, Gogem; Mhizha-Murira, Jacqueline R.; Griffiths, Holly; Bale, Clare; Drummond, Avril; Fitzsimmons, Deborah; Potter, Kristy Jane; Evangelou, Nikos; das Nair, Roshan

Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies Thumbnail


Authors

GOGEM TOPCU GOGEM.TOPCU@NOTTINGHAM.AC.UK
Programme Manager (Neuroms)

Clare Bale

AVRIL DRUMMOND avril.drummond@nottingham.ac.uk
Professor of Healthcare Research

Deborah Fitzsimmons

Kristy Jane Potter

ROSHAN NAIR Roshan.dasnair@nottingham.ac.uk
Professor of Clinical Psychology and Neuropsychology



Abstract

Purpose: This meta-synthesis aimed to synthesise qualitative evidence on experiences of people with Multiple Sclerosis (MS) in receiving a diagnosis, to derive a conceptual understanding of adjustment to MS diagnosis. Methods: Five electronic databases were systematically searched to identify qualitative studies that explored views and experiences around MS diagnosis. Papers were quality-appraised using a standardised checklist. Data synthesis was guided by principles of meta-ethnography, a well-established interpretive method for synthesising qualitative evidence. Results: Thirty-seven papers were selected (with 874 people with MS). Synthesis demonstrated that around the point of MS diagnosis people experienced considerable emotional upheaval (e.g., shock, denial, anger, fear) and difficulties (e.g., lengthy diagnosis process) that limited their ability to make sense of their diagnosis, leading to adjustment difficulties. However, support resources (e.g., support from clinicians) and adaptive coping strategies (e.g., acceptance) facilitated the adjustment process. Additionally, several unmet emotional and informational support needs (e.g., need for personalised information and tailored emotional support) were identified that, if addressed, could improve adjustment to diagnosis. Conclusions: Our synthesis highlights the need for providing person-centred support and advice at the time of diagnosis and presents a conceptual map of adjustment for designing interventions to improve adjustment following MS diagnosis.Implications for Rehabilitation The period surrounding Multiple Sclerosis diagnosis can be stressful and psychologically demanding. Challenges and disruptions at diagnosis can threaten sense of self, resulting in negative emotions. Adaptive coping skills and support resources could contribute to better adjustment following diagnosis. Support interventions should be tailored to the needs of newly diagnosed people.

Citation

Topcu, G., Mhizha-Murira, J. R., Griffiths, H., Bale, C., Drummond, A., Fitzsimmons, D., …das Nair, R. (2023). Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies. Disability and Rehabilitation, 45(5), 772-783. https://doi.org/10.1080/09638288.2022.2046187

Journal Article Type Review
Acceptance Date Feb 19, 2022
Online Publication Date Mar 7, 2022
Publication Date 2023
Deposit Date Feb 23, 2022
Publicly Available Date Mar 28, 2024
Journal Disability and Rehabilitation
Print ISSN 0963-8288
Electronic ISSN 1464-5165
Publisher Informa UK Limited
Peer Reviewed Peer Reviewed
Volume 45
Issue 5
Pages 772-783
DOI https://doi.org/10.1080/09638288.2022.2046187
Keywords Rehabilitation
Public URL https://nottingham-repository.worktribe.com/output/7504377
Publisher URL https://www.tandfonline.com/doi/full/10.1080/09638288.2022.2046187

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