%0 Journal Article
%A Heyne, Svenja
%A Kuzmanova, Adelina
%A Esser, Peter
%A Linse, Katharina
%A Günther, René
%A Mehnert-Theuerkauf, Anja
%A Metelmann, Moritz
%T How can we reduce psychological burden for patients of amyotrophic lateral sclerosis and their family caregivers? - Insights from the participatory multi-method study 'potentiALS'.
%J BMC neurology
%V 25
%N 1
%@ 1471-2377
%C London
%I BioMed Central
%M DZNE-2025-01158
%P 414
%D 2025
%X 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.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 questionnaires assessing quality of life (e.g., MQoL, SEIQoL-Q), depression and anxiety (ADI-12, HADS), and caregiver burden (BSFC-s). Feedback was obtained through structured group sessions that combined brief introductions, practical exercises, and subsequent evaluations of four therapy approaches - cognitive behavioral therapy (CBT), psychodynamic therapy (PT), acceptance and commitment therapy (ACT), and meaning-centered therapy (MCT).14 patients, 17 caregivers and nine HCPs participated in the study. Among patients, ACT was the most frequently selected (37.5
%K Humans
%K Amyotrophic Lateral Sclerosis: psychology
%K Amyotrophic Lateral Sclerosis: therapy
%K Male
%K Caregivers: psychology
%K Female
%K Middle Aged
%K Aged
%K Quality of Life: psychology
%K Adult
%K Cost of Illness
%K Surveys and Questionnaires
%K Cognitive Behavioral Therapy: methods
%K Amyotrophic lateral sclerosis (Other)
%K Family caregivers (Other)
%K Participatory approach (Other)
%K Psychotherapy (Other)
%K Supportive care (Other)
%F PUB:(DE-HGF)16
%9 Journal Article
%$ pmid:41057832
%R 10.1186/s12883-025-04440-w
%U https://pub.dzne.de/record/281635