[Psychosocial support needs and requirements for psychosocial care programs for caregivers of patients with ALS - A qualitative analysis from the "potentiALS" project].

Abstract

ALS is a terminal illness that places significant burden on caregivers due to the intensive care demands. Little research exists on the specific design of psychological support programs for caregivers of ALS patients. This study aims to identify psychosocial needs of caregivers, specific therapeutic topics and structural requirements for tailored support programs.The study is based on a subset of qualitative data from a participatory mixed-methods observational study. Semi-structured, one-hour interviews were conducted with caregivers of ALS patients, either online or in person. The transcripts were analyzed using Mayring's qualitative content analysis.Four caregivers participated in the study. They reported a high need for psychological support, especially immediately following the diagnosis. Key themes included emotional relief through dialogue with psychologists, strategies for emotion regulation, and fostering self-care. Practical needs highlighted the importance of clear guidelines for caregiving organization, assistance with medical devices, and the development of supportive programs to help manage life and plan for the future during challenging circumstances. Participants emphasized that support programs should be flexible, easily accessible, and personalized. Individual sessions with the option of in-person or online formats were preferred. Caregivers highlighted the necessity of continuous support throughout the disease trajectory, particularly during critical phases.The results of our study highlight the psychosocial challenges faced by caregivers of ALS patients. The findings emphasize the need for comprehensive support systems that address both the emotional and practical needs of caregivers.