Down syndrome caregivers' support needs: a mixed-method participatory approach

Abstract

Background: The purpose of the study was to explore the support needs of caregivers of children with Down syndrome from their perspective using a mixed-method participatory research approach.

Methods: Concept mapping methodology was used to obtain caregiver perspectives. Twenty-one caregivers answered the question 'Are parents of individuals with Down syndrome supported, why or why not?' Caregivers were involved in the analysis of the data through concept mapping procedures.

Results: Sorted data were analysed with multidimensional scaling and cluster analysis. Participants generated eight thematic clusters representing the support needs of caregivers of children with Down syndrome. The themes included online and social support, support system gaps, areas where support is lacking, Down syndrome community support, financial support, advocacy needs, educational support and concerns for community programming.

Conclusions: Themes align with previous research on support needs of parents of children with developmental disabilities. The study highlights the need for more local organisations to offer support that is affordable and accessible for families. Results will support future programme planning for services for individuals caring for those with Down syndrome.

Keywords: Down syndrome; caregivers; concept mapping; mixed methods; support needs.