ArticlePalliative care and social practice2022
Supportive needs of informal caregivers of people with amyotrophic lateral sclerosis in Switzerland: a qualitative study.
Article in Palliative care and social practice, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed, 13 citations in OpenAlex.
- Caregivers in amyotrophic lateral sclerosis (ALS): preliminary results between paid care and family care.Health psychology and behavioral medicine · 2026Article
- How can we reduce psychological burden for patients of amyotrophic lateral sclerosis and their family caregivers? - Insights from the participatory multi-method study "potentiALS".BMC neurology · 2025Observational
- Transitional Care for Patients with Amyotrophic Lateral Sclerosis to the Home: A Scoping Review.Revista brasileira de enfermagem · 2025Article
- Effects of a self-care educational program via telerehabilitation on quality of life and caregiver burden in amyotrophic lateral sclerosis: a single-blinded randomized clinical trial protocol.Frontiers in psychology · 2023Article
- Experiences of an Online Palliative Rehabilitation Programme for Spousal Caregivers of People With Amyotrophic Lateral Sclerosis and Cognitive and/or Behavioural Impairments: A Qualitative Interpretive Study.Advances in rehabilitation science and practiceArticle
Corrections and comments
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Authors and funding
4 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThis study explores the supportive needs of informal caregivers of people with amyotrophic lateral sclerosis (ALS) in Switzerland.
methodWe conducted semi-structured interviews with nine informal caregivers currently providing care to a person with ALS, 14 bereaved informal caregivers, and 13 healthcare professionals. Interviews were recorded on digital audio and analysed using an inductive thematic analysis within a realist framework.
resultInformal caregivers discussed five themes of support needs relating to being overburdened by administrative demand, in contact with healthcare providers, home support, especially during the terminal phase, and having or lacking social support. Healthcare professionals discussed three themes of support needs of informal caregivers which related to the general institutional support for informal caregivers, their own work as caring for informal caregivers, and the challenges in healthcare for families with ALS they encountered. SIGNIFICANCE OF
resultsInformal caregiving for people with ALS can be demanding. This study provides evidence for improvements in supporting informal caregivers. It shows administrative needs of informal caregivers, stresses their needs regarding advance care planning early in the context of ALS, and underlines the importance of social support, be it in peer-groups or community care.
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