Mutual support groups for family caregivers of people with amyotrophic lateral sclerosis in Italy: A pilot study

Abstract

Family caregivers of people with amyotrophic lateral sclerosis (ALS) live stressful lives in which they spend most of their time caring for their loved ones and managing difficult situations, thereby reducing the time spent in taking care of themselves. This situation may last several years. Previous literature has widely highlighted that this situation reduces caregivers' quality of life and increases their psychological distress and risk of health problems, but there is a lack of studies that focus on psychological interventions for these situations. This qualitative study examined a pilot experience of two mutual support groups for family caregivers of people with ALS. The aim was to identify caregivers' needs, the prominent aspects of their experience, and to understand whether and how this intervention strategy might help them. Six partners (four men and two women) and six adult children (five women and one man) participated in the groups, which were conducted in northern Italy. After the support groups finished, participants underwent semi-structured interviews. The authors conducted a content analysis of the transcripts of the interviews and the 20 group sessions. The thematic areas identified were "caregiving," "being the son/daughter of a person with ALS," "being the partner of a person with ALS," "group experience" and "group evaluation." The caregiving experience was profoundly different depending on whether the caregiver was a son/daughter or a partner of a patient with ALS. Moreover, comparison with peers and mutual support helped participants to better cope with ALS and its consequences, to improve their care for their relatives and to overcome typical caregiver isolation. These results suggest the usefulness of involving communities in caregiver support in order to create new networks and activate personal and social resources for well-being.

The Effectiveness of Psychoeducational Support Groups for Women With Breast Cancer and Their Caregivers: A Mixed Methods Study

“…Following the literature, it is possible to identify several aspects of psychoeducational support intervention that are functional in terms of improving the quality of life. First, the intervention promotes a psychological sense of belonging to the group, given that a cancer diagnosis can lead to a lack of relationships, both from a purely numerical point of view and in terms of reliability, and to feelings of loneliness; inside the group the presence of people that are going through the same experience and sharing the same problems, alleviates the loneliness, such that the subject feel that they are part of a new community, thanks to such a close network of social relationships (Cipolletta et al, 2018). The opportunity is offered to express difficulties and to experience a sense of catharsis, since expressing, sharing and knowing problems and feelings, but also hopes, generates a sense of liberation and provides a concrete psychological support.…”

Caregiver experience, health‐related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross‐sectional study

“…Interestingly, recent studies show that mindfulness/meditation training for patients with ALS and their caregivers are beneficial and promote psychological well‐being in both parties (Marconi et al., ; Pagnini et al., ). Other psychological interventions that seem promising are cognitive behavioural therapy (van Groenestijn et al., ) and therapeutic group interventions (Cipolletta, Gammino, Francescon, & Palmieri, ; Ugalde et al., ).…”

“…These factors might be related to informal caregivers, for example anxiety and depression (Burke et al., ; Vignola et al., ), problem‐solving skills (Murphy, Felgoise, Walsh, & Simmons, ) and lack of social support (Peters et al., ); or to patients with ALS, for example cognitive and behavioural impairments (Chio et al., ). Further, the quality of the relationship between caregivers and patients might be another important aspect (Cipolletta et al., ; Galvin et al., ). These factors were, however, not assessed in the present study.…”

“It was God’s will”: Continuing pregnancy after perinatal infection by Zika virus

“…Through various group activities, the support group meetings focused on the women’s statements about their experiences during pregnancy, birth, upbringing, and care for their children. Thus, it turned into a personal space to express and share fears and worries with other women who were facing similar experiences; and to build a group identity which was structured around a “communion” instead of around simple understanding ( 13 ) . Not to mention establishing a strong bond between the researches and the women.…”

“…Thus, it turned into a personal space to express and share fears and worries with other women who were facing similar experiences; and to build a group identity which was structured around a "communion" instead of around simple understanding (13) . Not to mention establishing a strong bond between the researches and the women.…”