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
Carers
Palliative Care
MS
Understanding experiences and concerns
Related research groups
Complex Healthcare Processes