The family experience of living with a person with amyotrophic lateral sclerosis: A qualitative study

Living with a person with amyotrophic lateral sclerosis (ALS) is a complex and difficult experience. Most research involves only the primary caregiver and uses a quantitative approach. The aim of this study was to explore the experience of family members who live with ALS patients until their death. In-depth, semi-structured interviews were conducted with 13 family members of ALS patients now deceased. Transcripts were analysed using interpretative phenomenological analysis. Three main themes were identified: "Meaning of ALS," including the peculiarity of ALS and its comparison with other illnesses, the explanation of ALS, emotions, coping strategies, personal change and difficult choices; "Family relationships," including centripetal vs. centrifugal forces, role changes, ALS as a family disease, ALS as a family solution, openness towards the outside world; and "Healthcare context," including access to services, information and humanization. One finding was that families of a person with ALS need more supportive interaction and information during the patients' illness and their end-of-life. This study is an invitation to understand families' experience and subsequently help them to find new ways to cope with the situation.