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

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.

Keywords:

• Diagnosis
• emotional adjustment
• emotions
• multiple sclerosis
• psychological adaptation
• qualitative research
• systematic review

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Acknowledgements

The authors thank Anita Rose, Karen Vernon, Jeanette Eldridge, Farhad Shokraneh, Abigail Methley, Olga Klein and the Multiple Sclerosis Patient and Public Group members for their contributions.

Disclosure 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.

Additional information

Funding

This work was supported by the MS Society UK under a Commissioned Grant [No. 63].