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

Sabrina Cipolletta, Linda Amicucci
Published Online:
16 Jul 2014
Volume/Issue No:
Volume 50 Issue 4

Additional Options

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.

© 2014 International Union of Psychological Science