Family caregivers of people with ALS: a qualitative study on two groups of mutual support

Abstract

Background: Literature widely pointed out that being a family caregiver of a person with Amyotrophic Lateral Sclerosis (ALS) reduces the quality of life and increases the risk of experiencing health problems, but studies concerning psychological interventions are still sporadic. Departing from this premise, this study explored a pilot experience of two mutual support groups for family caregivers of people with ALS, one for partners and one for children. The aim was to identify some prominent aspects of these caregivers’ experiences and to understand whether and how this intervention strategy might help them. Methods: The two groups were facilitated by two psychologists. Sessions were once every three weeks for a total of ten sessions. Six partners (four men and two women) and six children (five women and one man) participated in the project. At the end of the groups, the first author interviewed participants and a content analysis of the transcripts was conducted. Findings: The analysis showed five thematic areas: “Caregiving,†“Being son/daughter of a person with ALS,†“Being partner of a person with ALS,†“Group evolution,†and “Personal perception of the groups.†Discussion: Results pointed out that caregiver’s experience is profoundly different in the case of the child or the partner of a person with ALS. Moreover, the comparison with peers and the mutual support with them helped participants to better cope with ALS and its consequences, to improve their care for patients and to overcome the typical caregiver’s isolation.