Barreiras e facilitadores para a participação de crianças e jovens adultos com Síndrome de Down: revisão sistemática

Abstract

Introduction: Down syndrome (DS) is a genetic condition determined by the presence of one more chromosome in pair 21, being considered the most common cause of intellectual disability in the Brazilian population. According to the family of constructs related to participation, the concept of participation involves two essential components: frequency and involvement. Participation enables people to explore the environment, enhance skills and improve well-being. However, children with DS generally find restrictions in their participation in their daily lives. Objective: To identify barriers and facilitators for the participation of children, adolescents and young adults with DS. Methods: A systematic literature review was performed. Searches in the PubMed, Embase, Web of Science, PsyINFO and Scielo databases were carried out during the month of January 2022, without language or date restrictions. Original qualitative and quantitative studies, published in peer-reviewed journals, were included if they examined perceived barriers and/or facilitators to DS participation. The methodological quality of the articles was assessed by two independent reviewers using McMaster Critical Review Forms for qualitative and quantitative studies. Results: Ten studies, eight qualitative and two quantitative, involving 206 participants met the inclusion criteria. Of these, seven studies scored above 70% on the McMaster Scale. The physical characteristics and health attributes of individuals with DS (eg hypotonia and heart problems) were the personal barriers identified for participation. Social barriers frequently addressed in studies were associated with family attitudes, social interaction and financial resources. The lack of professionals and specialized activities were the most commonly reported political barriers, while the lack of accessibility and transportation were identified as environmental barriers. The personal facilitators for SD participation were pleasure, individual skills, motivation and fun. Factors such as the attitude of families, friends and social interaction appeared as social facilitators for participation, while the availability of specialized professionals to conduct activities, as well as specific activities for people with DS, were considered important political facilitators. Environmental facilitators were not reported in any of the studies. Conclusion: There are personal, social, political and environmental barriers and facilitators that determine participation in DS. These results increase the understanding of potential factors that hinder and help the participation of individuals with DS and provide essential information for planning interventions that promote participation.