Association between participation at home and functional skills in children and adolescents with Down syndrome: A cross‐sectional study

Abstract

BackgroundAccording to a biopsychosocial approach to health and disability, participation at home and functional skills are important components of the functioning. Therefore, knowledge about interactions between these components allows for targeting specific interventions.ObjectiveThis study investigated whether participation opportunities (frequency and involvement) for children/adolescents with Down syndrome (DS) in a realistic environment at their own home are associated with the functional skills related to the domains of Daily Activities, Mobility, Social/Cognitive and Responsibility.MethodsThis was an observational study. Forty‐eight children/adolescents with DS participated (mean age: 10.73 ± 3.43; n = 27 females). Participants were evaluated using the Participation and Environment Measure for Children and Youth (PEM‐CY) home environment setting (raw frequency and engagement scores) and Pediatric Evaluation of Disability Inventory speedy version (PEDI‐CAT‐SV) (continuous score).ResultsSignificant and positive correlations were found between the frequency of participation at home with Daily Activities (ro = 0.320), Social/Cognitive (ro = 0.423) and Responsibility (ro = 0.455). For involvement, significant and positive correlations were found with Daily Activities (ro = 0.297), Social/Cognitive (ro = 0.380) and Responsibility (ro = 0.380). For the PEDI‐CAT‐SV Mobility, no significant correlation was found.ConclusionsHigher frequency and involvement of participation at home are associated with greater functional skills assessed, except for Mobility. This study provided pioneering insights about the relationships between the level of home participation and functional skills in DS, generating evidence that could guide approaches to participation‐focused intervention.

Home participation and personal and environmental factors in children and adolescents with Down syndrome

“…This may suggest that the opportunities children are given to participate may be out of their interests or desires, resulting in limited involvement. 26 This finding reinforces the independence of frequency and involvement as participation constructs, and the need to assess and address both components using specific creative approaches. Clearly, personal care management represents an important area for caregivers, who probably would appreciate support in enabling their children to be more involved in these important life skills.…”

“…For our first aim, participants notably reached the maximum possible frequency score for personal care management. A previous study, 26 good performance in daily activities in the population with Down syndrome. Together these results illustrate that children with Down syndrome can participate in several activities, such as personal care activities, at home.…”

Participação em casa e fatores pessoais e ambientais em crianças e adolescentes com síndrome de Down

“…Para o nosso primeiro objetivo, os participantes atingiram notavelmente a pontuação de frequência máxima possível para cuidados pessoais. Um estudo anterior, 26 utilizando o Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT), mostrou bom desempenho nas atividades diárias na população com síndrome de Down. Juntos, esses resultados ilustram que as crianças com síndrome de Down podem participar de diversas atividades, como as atividades de cuidados pessoais em casa.…”

“…Isto pode sugerir que as oportunidades que as crianças recebem para participar podem estar fora dos seus interesses ou desejos, resultando num envolvimento limitado. 26 Esta conclusão reforça a independência da frequência e do envolvimento como constructos de participação, e a necessidade de avaliar e abordar ambos os componentes usando métodos específicos e abordagens criativas. Claramente, os cuidados pessoais representam uma área importante para os cuidadores, que provavelmente apreciariam apoio para permitir que os seus filhos se envolvessem mais nestas importantes competências para a vida.…”

Participation of young people with Down syndrome: Moving beyond educating families

“…The scoping review by Souto et al 1 . and the cross‐sectional study by Brugnaro et al 2 . examined factors associated with the participation of young people with Down syndrome in home and community activities.…”