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Research project: Men as carers in multiple sclerosis: identifying their support needs and preferences

Currently Active: 

Multiple sclerosis (MS) affects about 85,000 people in the UK. While life expectancy of people with MS is only slightly lower than that of the rest of the population and disease modifying treatments may reduce the risk of significant disabilities, people with progressive forms of MS may become increasingly disabled. Recent evidence suggests that concerns over losses of independence, physical functioning and personal relationships evolve and continue for the duration of the disease.

Multiple sclerosis affects twice as many women as men but little is known about the experiences and needs of men who care for women at the end of life. Research exploring carers’ needs has predominantly focused on female carers. It tells us that caring can be challenging and at times rewarding but demonstrates how social and health support is beneficial to caregivers in maintaining their caring role and quality of life.

The aim of this research is to identify the support needs and preferences for support of male carers caring for women with multiple sclerosis with palliative and end of life care needs. The project is being conducted in three stages: first, 30 men caring for women with severe MS have been invited to tell their stories about how they are living and coping with caring to learn from them what support would be useful and how they would prefer to receive such support. We are also inviting up to 10 bereaved men with experience of caring for a person with MS to tell their stories.

To broaden the range of experiences, we are also explore men’s stories of caring posted on UK internet sites. Collecting all these stories will allow us to identify the perceived support needs of men and their preferred way of receiving such support. Second, we will develop a questionnaire based on the findings of the men’s stories to test with up to 150 men to establish the validity of the findings. Finally, we will invite 8 MS patients, 8 male caregivers and 8 health professionals to meetings to consider the findings, to make practical recommendations for improving support for men caring for people with MS, and to discuss future research priorities.

Project team

Addington-Hall J , Sibley A,  Payne S

Project funder

MS Society


Associated research themes

Palliative Care
Understanding experiences and concerns

Related research groups

Complex Healthcare Processes
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