ArticleDevelopmental medicine and child neurology2023
Factors influencing participation in home, school, and community settings by children and adolescents with neuromuscular disorders: A qualitative descriptive study.
Article in Developmental medicine and child neurology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed, 9 citations in OpenAlex.
- Developing an Inclusive Dance Guide for Children With Cerebral Palsy: A Co-Design Process and Initial Feasibility Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Predictors of overload in parents of children with neuromuscular diseases.Frontiers in neurology · 2024Article
- Factors influencing participation in home, school, and community settings by children and adolescents with neuromuscular disorders: A qualitative descriptive study.Developmental medicine and child neurology · 2023Article
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Authors and funding
6 authors at 1 institution in 1 country.
Funding
Abstract
aimThis study explored how children and adolescents with a neuromuscular disorder (NMD) and their parents experienced barriers and enablers to the child's participation.
methodThis was a qualitative descriptive design. Fourteen semi-structured interviews were conducted (n = 13 mothers, n = 4 fathers, n = 8 children and adolescents) including one to three family members for each interview according to their preference. Data were analysed by content analysis, using the family of Participation-Related Constructs (fPRC), to characterize the components of participation.
resultsMeaningful participation was illustrated in the personal categories of the fPRC including the child's sense of self, preferences, and competence to perform activities. Enablers and barriers related to adaptive equipment and activity modification, social relationships, inclusion, accessibility to venues, social attitudes, and policies.
interpretationPersonal motivators are critical to understanding what participation is meaningful to children and adolescents with NMDs. Social and physical supports within the child's immediate environment as well as accessibility and advocacy more widely in the community enable participation. The fPRC is a useful tool for understanding participation in these children; it informs how to support participation and suggests domains for evaluation in future intervention studies. Advocacy for participation should consider targets in the immediate and broader environments. WHAT THIS PAPER ADDS: The family of Participation-Related Constructs classified the components of participation for children and adolescents with neuromuscular disorders. Meaningful participation involved a complex interaction between personal and environmental factors. Barriers to participation included poor accessibility, lack of equipment, and social exclusion.
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