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

Abstract

Purpose To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service. Materials and methods 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 (n = 3) and focus group interviews (n = 5). In all, 19 adults with neuromuscular disease (n = 13) or spinal cord injury (n = 6) participated. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Results Three themes were identified to understand living with personal assistance and how this affected everyday life: 1) Making meaning of a personal assistance service, 2) Managing a personal assistance service, and 3) Living with a personal shadow. 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. Conclusion 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.