Bereavement and Support Experiences of Informal Caregivers of Persons with Amyotrophic Lateral Sclerosis: A Qualitative Study.
JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift)
 
ID 4637015
Author(s) Poppe, Christopher; Iseli, Luzia M; Verwey, Martine; Wangmo, Tenzin
Author(s) at UniBasel Wangmo, Tenzin
Poppe, Christopher
Iseli, Luzia Margarete
Year 2021
Title Bereavement and Support Experiences of Informal Caregivers of Persons with Amyotrophic Lateral Sclerosis: A Qualitative Study.
Journal Journal of social work in end-of-life & palliative care
Pages / Article-Number 1-17
Keywords Amyotrophic lateral sclerosis; bereavement; family; informal caregiving; needs; qualitative study
Abstract

Informal caregivers provide the major part of care for persons with amyotrophic lateral sclerosis (ALS), a terminal neurodegenerative disease. Apart from providing care, informal caregivers are themselves in need of support to fulfill the task of daily caregiving and to reduce their burden of caregiving. This need for support does not end with the death of the person cared for. In this study, we explore the themes of bereavement and support experience of informal caregivers of persons with ALS from interviews conducted with bereaved informal caregivers (; n;  = 14) in Switzerland. Three key themes were salient in our data:; Reacting to bereavement, finding support; , and; adjusting to life without the person with ALS.; These themes are contrasted with themes from interviews (; n;  = 11) with healthcare professionals (nurses, therapists, physicians) who care for patients and families with ALS. The themes described were; offering support; and; identifying gaps in the support; . We discuss support after bereavement for informal caregivers of persons with ALS in the established public health model of bereavement support. Bereavement support needs to be proactive from healthcare professionals; however, it requires the goodness of fit to address those in need and not those who are adequately supported by informal sources of support.

ISSN/ISBN 1552-4264
Full Text on edoc
Digital Object Identifier DOI 10.1080/15524256.2021.1976352
PubMed ID http://www.ncbi.nlm.nih.gov/pubmed/34605373
   

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