Down Syndrome Caregivers’ Support Needs: A Caregiver Perspective
Abstract
The purpose of the study was to gain an understanding of the support needs caregivers of children with Down syndrome (DS) experience and to provide recommendations to services and advocacy agencies in the community. Caregiver perspectives were gained from individual interviews addressing the research question “Are parents of individuals with DS supported, why or why not?” Caregivers were involved in the analysis of the data through Concept Mapping procedures. Participants generated eight thematic clusters representing the support needs of caregivers of children with DS. The themes included online social support, community support gaps, areas where support is lacking, Down Syndrome community support, financial support, advocacy needs, educational support and concerns for community programming. The study highlights the need for more local organizations to offer support that is affordable and accessible for families. Results will support future program planning for services for individuals caring for those with DS.