Loss and change: Experiences of people severely affected by multiple sclerosis

Abstract

This study aimed to explore important issues for people severely affected by MS. Individual interviews were conducted with 23 people with MS and 17 informal carers, the data relating to 32 people with MS. Information was obtained about 19 women and 13 men, with a mean age of 55, median time from diagnosis 14.5 years, and physical disabilities which ranged from mild to severe, although most patients (15) had severe disabilities. Twenty six of the 32 individuals were unable to walk, 24 were catheterised and 18 had considerably impaired or no upper limb function. Personal issues in relation to loss and change, particularly in terms of losses of or changes in physical abilities, including maintaining mobility, independence, relationships and social role were raised commonly in response to an open ended question about what issues were important in living with MS. Coping with MS requires individuals to deal with the losses and changes brought about by their illness. Our study suggests that even patients who have had MS for many years and are now severely affected continue to experience loss and change. We recommend that attention be given to emotional support which specifically addresses three main areas of dealing with loss and change for people that are severely affected; physical issues, independence and relationships. Palliative care providers may have expertise in managing loss that could be useful for these patients in partnership with neurological services.