Caregiver Concerns for Children and Adolescents With Down Syndrome: A Cross-Sectional Study in Brazil

The aim of this study is to describe and compare areas of concern for caregivers of children and adolescents with Down syndrome across ages and explore how these areas impact their ability to participate in daily activities.

One hundred and seventeen caregivers of children and adolescents with Down syndrome, aged 0-18, participated and completed the About My Child questionnaire. Descriptive analyses of data from the caregivers were carried out. Individual item scores and the mean scores, standard deviations, median and confidence interval of the total Concern and Impact scores were calculated. Item analyses were carried out across age groups (Kruskal-Wallis test) and between children and adolescent groups (Mann-Whitney Test), aiming to explore concerns and impacts at different ages.

The lowest mean concern score for an age group was 9.27, and the highest was 12.67, with possible scores from 0 to 19. The lowest mean impact score for an age group was 2.80, and the highest was 3.25, with possible scores from 0 to 4. The items with the highest frequency of concern for most age groups were communication, participation in school and community and behaviour. The biggest impacts on participation were reported for the items concerning the use of arms and hands, sleep and hearing. No differences were found across age groups.

This study found that caregivers of children and adolescents with Down syndrome have concerns about their child that, in total, do not change throughout life.