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Family support in ALS

Research project
Active research
Project owner
Institutionen för vårdvetenskap och hälsa
Research partners
Docent Ingela Nygren, Akademiska sjukhuset Uppsala Dr Birgitta Jakobsson Larsson, Akademiska sjukhuset Uppsala Professor Peter Andersen
Financier
Ulla-Carin Lindquists stiftelse, Neuroförbundet, Stiftelsen Wilhelm och Martina Lundgrens Vetenskapsfond, GPCC, Svensk sjuksköterskeförening
Area
Health and medicine
Topic
Nursing

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.

Publications 

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.

Research project/group
Care for people with long-term conditions: paediatric care, neurological care,…
Institute of Health and Care Sciences
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