Participation amongst people ageing with neuromuscular disease: a qualitative study of lived experiences.
Louise Abildgaard Møller, Bente Martinsen, Ulla Werlauff and 1 others
PMID 34165266WHAT IT FOUND
Adults ageing with neuromuscular disease described endless adaptations to keep participation, such as staying dressed in outdoor clothes for several daytime hours before an afternoon outing.
Hobbies and assistant relationships supported belonging, while professionals' lack of disease knowledge made care feel disempowering.
Key findings
01People maintained participation by endlessly adapting everyday routines, including spending several daytime hours in outdoor clothes before an afternoon outing.
02Hobbies and relationships with assistants were described as ways to maintain belonging and participation.
03Participants said professionals' lack of neuromuscular disease knowledge made them feel powerless and could prevent needed support.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
Only 15 adults aged 42-72 years were interviewed, all living at home in Denmark, so the themes may not apply to institutionalised people or other countries. The study reports lived experience and themes, not measured outcomes or effects of any treatment, service, or adaptation. Participants were purposively sampled from two Danish services, so they are not a random sample and cannot show how common these experiences are. The first author was an experienced neurological nurse, and the authors' preunderstandings may have shaped the interviews and interpretation.
Declared interests
The authors reported no potential conflict of interest. One author received grants during the study from The Danish Regions, the Danish Health Confederation, Jaschafonden, the Vanføre Foundation, Muskelsvindsfonden, and the Danish neuromuscular patients' association.
The easy way to misread this
Do not read these themes as evidence that hobbies, assistants, or service coordination improve participation or clinical outcomes. This was a qualitative interview study of 15 people, so it reports lived experience rather than measured effects.