"Walking a tightrope": A grounded theory approach to informal caregiving for amyotrophic lateral sclerosis.

ABSTRACT: Informal caregivers, mainly family members and friends, provide supportive and palliative care for people with amyotrophic lateral sclerosis (ALS) during their terminal disease course. Informal caregiving for people with ALS continues towards palliative care and end-of-life care with the progression of the disease. In this study, we provide a theoretical understanding of informal caregiving in ALS utilising 23 semi-structured interviews conducted with informal caregivers of people with ALS (pwALS) in Switzerland. Due to the expected death of the care recipient, our grounded theory approach outlines informal caregivers' caregiving work as an effort to secure a balance amongst different caregiving activities, which feed into the final stage of providing palliative care. Overall, our theoreti

SUBMITTER: Poppe C 

PROVIDER: S-EPMC9545073 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature