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Down Syndrome Caregivers’ Support Needs: A Mixed-Method Participatory Approach, Katie M. Hart, Nicole Neil Jan 2021

Down Syndrome Caregivers’ Support Needs: A Mixed-Method Participatory Approach, Katie M. Hart, Nicole Neil

Education Publications

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 …