Family support in ALS
The project aims to improve the supportive care for families in which a person has ALS through the development of a complex intervention
Details
- Funder: Neuroförbundet
Description
The research project conducts research aiming to improve knowledge about family members need for support following a family member being diagnosed with ALS (amyotrophic lateral sclerosis). A support intervention is further being developed to provide more structured care from diagnosis to end-of-life care. The aim is to reduce risks of psychological distress among children of individuals diagnosed with ALS, as well as of parents.
Research about personal assistance is being conducted to increase knowledge about support and education for individuals working with personal assistance, both to improve the work conditions, as well as to increase the sense of security among patients and their close relatives.
Collaboration
The project is conducted in a collaboration between Uppsala University, Gothenburg University and Umeå University.
Publications
Part of Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, p. 727-735, 2023
- DOI for Living with a parent with ALS: adolescents' need for professional support from the adolescents' and the parents' perspectives
- Download full text (pdf) of Living with a parent with ALS: adolescents' need for professional support from the adolescents' and the parents' perspectives
Support intervention
The project is developing a complex support intervention regarding patient-centered and integrated care from point of diagnosis to end-of-life care for families with children in which a parent has ALS.
The intervention aims to offer more structured support to aid children of individuals diagnosed with ALS, as well as to the parents.
The intervention is being developed using participatory design in which patients, relatives, healthcare professionals and researchers will collaborate throughout the research process and in the development of the intervention.
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Personal assistance
ALS is a progressive disease, and the need for support and help is constantly changing over time. This further means that personal assistants working with individuals with ALS continuously need to develop their knowledge to be able to care for the patients in the best way possible.
As such, the project aims to investigate the work environment of personal assistants working with patients with ALS, as well as their need for education and support. This is being investigated both from the perspectives of the personal assistant, but also from the perspectives of individuals with ALS and their families. Reasons for premature determination of employment is also being investigated.
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