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. 2023 Mar;45(5):772-783.
doi: 10.1080/09638288.2022.2046187. Epub 2022 Mar 7.

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

Gogem Topcu  1 , Jacqueline R Mhizha-Murira  1 , Holly Griffiths  1 , Clare Bale  2 , Avril Drummond  3 , Deborah Fitzsimmons  4 , Kristy-Jane Potter  1 , Nikos Evangelou  1   5 , Roshan das Nair  1   6
Affiliations

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

Gogem Topcu et al. Disabil Rehabil. 2023 Mar.

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 RehabilitationThe 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.

Keywords: Diagnosis; emotional adjustment; emotions; multiple sclerosis; psychological adaptation; qualitative research; systematic review.

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Conflict of interest statement

RdN is an author in one study that was included in this meta-synthesis. All other authors declare that they have no conflicts of interest.

Figures

Four-phase flow diagram showing numbers of identified records through searching, records screened and full-text articles assessed for eligibility, excluded studies with reasons for exclusion, and included studies. Thirty-seven articles included in the meta-synthesis in total.
Figure 1.
PRISMA flow diagram describing the literature search and screening process (Adapted from Moher et al. [34]).
‘Emotional reactions’ and ‘external challenges’ at MS diagnosis were grouped together as factors playing a role in ‘sense making’. Emotional and informational support, and coping skills were grouped as mediators because of their mediating role between adjustment, sense making and internal and external factors.
Figure 2.
A conceptual map of adjustment following MS diagnosis, representing the dynamic relationships between the themes identified from the synthesis.
See this image and copyright information in PMC

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