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Patients’, carers’ and providers’ experiences and requirements for support in self-management of multiple sclerosis: a qualitative study

Francesca Deibel, Michelle Edwards, Adrian Edwards


Background: Self-management is a process increasingly promoted for the management of long term conditions, both for ethical reasons of enhancing autonomy and for likely cost-effectiveness, but the nature and scope of self-management strategies are currently highly variable.

Objective: To identify patients’, carers’ and clinicians’ current experiences of self-management in multiple sclerosis (MS) and their recommendations for the development of a future MS-specific self-management intervention

Methods: Qualitative study using focus groups and semi-structured one-to-one interviews with a purposive sample. Three focus groups were held with 25 patients with moderate to advanced multiple sclerosis and 4 carers. Ten clinicians were interviewed. Data underwent thematic analysis.

Results: Participants perceived multiple aspects of MS to be amenable to self-management, but identified a current lack of service provision to support their abilities to self-manage. Participants felt that to address both the physical and psychosocial challenges posed by MS required better information provision, a strong relationship with healthcare professionals and a toolkit of self-management skills. Participants expressed concern at the lack of consideration currently given to carers, which should be addressed in future provision.

Conclusion: The diverse experiences of patients living with MS warrant a multidisciplinary, flexible and proactive approach to improve their self-management capabilities, acknowledging both patients’ and carers’ unmet needs. The findings can be used to guide the development of future self-management interventions specific to individuals with multiple sclerosis.


Long term conditions, Multiple Sclerosis, person-centered healthcare, qualitative, self-care, self-management

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