How can we reduce psychological burden for patients of amyotrophic lateral sclerosis and their family caregivers? - Insights from the participatory multi-method study "potentiALS".

ABSTRACT:

Background

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal motor neuron disease that severely impacts patients' physical and emotional well-being, while also imposing significant burdens on family caregivers. Despite the high psychosocial demands as part of the multidimensional burden, evidence for effective interventions remains limited. This study employed a participatory approach to assess the support needs of ALS patients and caregivers and to evaluate their preferences for psychosocial therapies to derive a therapeutic framework.

Methods

In this observational multi-method study, ALS patients, their family caregivers, and healthcare professionals (HCPs) were actively involved throughout the research process. Quantitative Data were collected through structured

SUBMITTER: Heyne S 

PROVIDER: S-EPMC12502389 | biostudies-literature | 2025 Oct

REPOSITORIES: biostudies-literature