Experiences and reflections on living with a personal assistance service: a qualitative study of people with neuromuscular disease or spinal cord injury

To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service. Qualitative study using the Interpretive Description methodology with Aaron Antonovsky's theory of sense of coherence as a theoretical framework. The method was semi-...

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Bibliographic Details
Published in:Disability and rehabilitation 2024-06, Vol.47 (5), p.1146-10
Main Authors: Andersen, Karoline Yde, Ravn, Sophie Lykkegaard, Krogh, Marlene, Handberg, Charlotte
Format: Article
Language:English
Subjects:
Activities of Daily Living
Adult
Aged
Female
Focus Groups
Humans
Interviews as Topic
Male
Middle Aged
Neuromuscular Diseases - psychology
Neuromuscular Diseases - rehabilitation
Persons with Disabilities - psychology
Persons with Disabilities - rehabilitation
Qualitative Research
Quality of Life
Sense of Coherence
Spinal Cord Injuries - psychology
Spinal Cord Injuries - rehabilitation
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Summary:To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service. Qualitative study using the Interpretive Description methodology with Aaron Antonovsky's theory of sense of coherence as a theoretical framework. The method was semi-structured individual interviews ( and focus group interviews ( . In all, 19 adults with neuromuscular disease ( ) or spinal cord injury ( ) participated. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Three themes were identified to understand living with personal assistance and how this affected everyday life: 1) 2) and 3) . Our findings provide an understanding of living with assistance and how it, among other things, is influenced by the legislation and the local authorities' administration of the service. Participants explained this by an experience of a sense of coherence. For people with NMD and SCI, there are complex nuances associated with living with a personal assistance service. The findings illustrate that despite personal challenges of managing assistance services, it can meaningfully contribute to one's life by enhancing one's sense of coherence.
ISSN:0963-8288
1464-5165
DOI:10.1080/09638288.2024.2364828