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

In this study, we described home participation in everyday situations of children with Down syndrome, and their caregiver's desire for change. We investigated frequency (how many times they participate) and involvement (how involved they are during participation). We also explored associations of personal and environmental factors that surround children and their families.

In total, 82 caregivers (mean age = 45 years 10 months) of children and adolescents with Down syndrome (mean age = 10 years 7 months) participated. They were surveyed about the child's home participation and environmental factors using the Participation and Environment Measure-Children and Youth (PEM-CY). Furthermore, information about the children's personal and environmental factors were collected.

Children's participation was highest with regard to personal care management and lowest with regard to school-related activities. Most caregivers desired change in homework and household chores.

There was more home participation for male children, when the caregiver was less rigorous about social distancing due to the COVID-19 pandemic, and when the children were receiving therapies. Increased involvement was associated with younger age in children and higher environmental support. Older age in children was associated with the caregiver's greater desire for change.

We found that children with Down syndrome have strengths and weaknesses to be encouraged in participation at home. Personal and environmental factors were correlated in specifics ways. It is important that caregivers and health care providers consider home participation and the factors that may be associated with it in order to promote it.