Factors influencing participation in home, school, and community settings by children and adolescents with neuromuscular disorders: A qualitative descriptive study.
Aysha Stroobach, Andrew C Wilson, Jenny Lam and 3 others
PMID 36303274WHAT IT FOUND
Children with neuromuscular disorders valued decision-making and planning as participation, even when they could not perform tasks.
They relied on adapted equipment and peer inclusion to maintain confidence, while inaccessible community spaces caused withdrawal.
Key findings
01Children perceived planning and decision-making as valid forms of participation, often valuing control over physical execution of tasks.
02Confidence and self-esteem were maintained through successful participation with adaptations, but were damaged by exclusion or inaccessible environments.
03Equipment and technology were critical enablers for independence, but cost and acquisition time were significant barriers.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was small and mostly male, limiting how well findings apply to girls or diverse neuromuscular conditions. Children were rarely interviewed alone, so their voices may have been influenced by parents present. Participants were from urban areas in one Australian state, which may not reflect rural experiences. The study describes experiences and does not test whether any intervention improves participation.
Declared interests
The authors declared no conflicts of interest. The work was funded by Curtin University and the National Health and Medical Research Council.
The easy way to misread this
Do not treat this as evidence that specific interventions improve participation. The study describes what families experienced and valued, but it did not test any treatment or measure outcomes.