“If I accept it is all a symptom, I won't be able to do my job”: Personal assistants' views on irritability in amyotrophic lateral sclerosis

Medical knowledge is not the exclusive domain of doctors. Instead, it is interpreted and negotiated by patients and those who support them. Previous research has focused primarily on how patients, parents and teachers interpret medical knowledge, and few studies have examined the interpretive practices of those supporting adult patients. Now that increasing numbers of adults live with disabilities and chronic conditions, it is essential not to exclude individuals supporting these adults from discussions about the social practices of medical interpretation. This study fills this gap by exploring how personal assistants (professional caregivers for disabled persons) apply medical knowledge to the psychological difficulty of amyotrophic lateral sclerosis in home care settings. Through 16 in-depth interviews and two focus groups, we identified that some personal assistants identify irritability as a symptom. However, most struggle to connect hostility to the medical explanation because of the environment and ethos of personal assistance. Personal assistants work within patients’ private spaces and adopt a holistic approach to understanding their needs. They are therefore reluctant to attribute behaviors solely to medical causes. This reluctance stems from a perception that medical explanations overlook the broader context of patients’ needs. These findings suggest that medical knowledge may at times conflict with professional ethics, and its acquisition does not automatically lead to better care. • Psychological difficulties in ALS are a clinical concern but rarely examined in social science. • This study examines how personal assistants interpret mental difficulties in ALS. • PAs often hesitate to fully accept medical explanations due to their professional ethos. • Medical knowledge of mental difficulties does not necessarily translate into better care.