The Journey: Parental Expectations and Perceptions of Therapy Services for Children With Down Syndrome.

PURPOSE: The researchers sought to identify and describe parents' expectations and perceptions of therapy services received by their children with Down syndrome.

METHODS

This study used a qualitative descriptive approach conducted in 2 phases: individual semi-structured parent interviews followed by focus groups. Analysis of interview transcripts served as the basis for development of codes, categories, and themes describing parents' beliefs, values, and opinions of their children's therapy.

RESULTS

Within the metaphor of The Journey, 3 major themes emerged: Where are we going? Who's driving the car? What I really need for this trip.

CONCLUSIONS

Parents value the principles of family-centered care and want a partnership with therapists in caring for their children. Therapists can help parents of children with Down syndrome navigate their children's therapy services by establishing a relationship of trust and by communicating with respect, understanding, and compassion.