title: The family experience of living with a person with amyotrophic lateral sclerosis: a qualitative study.
abstract: 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.
authors.affiliation: Department of General Psychology, University of Padua, Italy.
authors.forename: Sabrina
authors.initials: S
authors.lastname: Cipolletta
authors.affiliation: Department of General Psychology, University of Padua, Italy.
authors.forename: Linda
authors.initials: L
authors.lastname: Amicucci
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology; D017028:Caregivers / Q000523:psychology; D003643:Death; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D007558:Italy; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D055815:Young Adult
keywords: Amyotrophic lateral sclerosis; Caregiver; End-of-life; Family; Qualitative methods