‶You look really good, I don’t know why you came here″: persons with multiple sclerosis´ perspectives on social support

Abstract

ABSTRACT The aim of this qualitative study is to gain insight into the perspectives of persons with multiple sclerosis on social support. Semi-structured interviews were conducted with eleven persons with multiple sclerosis. The results on informal support for persons with multiple sclerosis reveal perceived support and the lack of support from different persons. The results on formal support for persons with multiple sclerosis show perceived support from healthcare professionals, professionals working outside healthcare and social care systems, and associations of persons with MS, but also inadequate support from healthcare professionals and social workers. Close emotional relationship, empathy, knowledge and understanding are the basis for provision of all types of support from informal support system, while perceived support from formal support system is based on professionals´ empathy, their professionalism and knowledge. Persons with multiple sclerosis need accurate and timely emotional, informational, practical and financial support.