What are the barriers and facilitators to participation of people with Down syndrome? A scoping review

Abstract

AimTo determine the barriers and facilitators of active community participation of children, adolescents, and adults with Down syndrome.MethodSearches were completed in five electronic databases to identify original studies about participation of children, adolescents (ages < 18 years), and adults (ages 18–59 years) with Down syndrome. Barriers and facilitators to participation were categorized into four factors: personal, social, environmental, and policy and programme. Findings were analysed and validated by a young adult with Down syndrome and a family member, using the public and patient involvement strategy.ResultsFourteen studies were included: eight with children and adolescents and six with adults. Of the 14 studies, 10 were qualitative and four quantitative. Most studies (n = 9) investigated participation in physical activities, while only a few examined participation in community/social activities (n = 3), daily activities (n = 2), and leisure activities (n = 1). The most commonly cited barriers and facilitators were the availability of programmes and specialized professionals, transportation, as well as attitudes and behaviours. Physical and psychological characteristics of people with Down syndrome and facilities were also frequently mentioned as barriers. On the other hand, the desire to stay active and personal interest in the activity were among the most frequently reported facilitators.InterpretationThe participation of people with Down syndrome is mainly influenced by physical or psychological factors, the support and attitudes of parents/caregivers, and the availability of specialized programmes. Given the scarcity of research investigating the participation of people with Down syndrome in community activities, daily activities, and leisure, especially in adults, more studies are still needed.

Organised and non‐organised activities contribute to overall physical activity levels in adolescents and young adults with Down syndrome: a cross‐sectional study

“…Participation is defined as 'involvement in life situations' (World Health Organization 2001), and encompasses both attendance ('being there') and involvement ('the experience of participation') (World Health Organization 2001;Hoogsteen & Woodgate 2010;Coster et al 2011b;Kang et al 2014;Imms et al 2017). Research about physical activity participation in people with Down syndrome has focused on physical activity measurement and barriers and facilitators to physical activity participation (Sutherland et al 2021;Yu et al 2022;Souto et al 2024). Less is known about their physical activity participation (i.e.…”