man i rullstol omgiven av anhöriga
Photo: Xavier Mouton

Family support in ALS

Research project
Active research
Project owner
Institutionen för vårdvetenskap och hälsa

Ulla-Carin Lindquists stiftelse, Neuroförbundet, Stiftelsen Wilhelm och Martina Lundgrens Vetenskapsfond, GPCC, Svensk sjuksköterskeförening

Short description

Maintaining children's health when a parent is diagnosed with ALS – developing a complex intervention to promote child-centered support.

The aim of the project is to explore the significance of being a child living with a parent diagnosed with ALS, the meaning of parenthood, existing and desired support, and to develop a complex intervention regarding support for families where one parent has ALS.

The model is intended to provide families with person-centered, close care based on interprofessional teamwork. Through collaboration between hospitals, municipalities, and other relevant entities for the family, this close care can enhance support from diagnosis to end-of-life care.


Malmström N, Jakobsson Larsson B, Nilsson S, Öhlén J, Nygren I, Andersen P, Ozanne A. Living with a parent with ALS - adolescents’ need for professional support from the adolescents’ and the parents’ perspectives. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2023 Jul 24; 1–9. doi: 10.1080/21678421.2023.2228348.