A family-derived framework of therapy services for children with down syndrome




Early, Diana

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The purpose of this qualitative study was to develop a family-derived framework of therapy services for children with Down syndrome. The researcher used semi-structured interviews to obtain parental perceptions of therapy services for their children with Down syndrome. Seventeen parents and eight therapists took part in individual and focus group interviews. Interviews allowed for exploration of elements that affected parent satisfaction and roles that parents perceived they played in their children's therapy services. Parents discussed the advantages and disadvantages of the settings, models, and service delivery methods; furthermore, they described emotions and factors that affected their perceptions of their children's therapy services.

Parents perceived the experience of having a child with Down syndrome as a journey in which they faced many unknowns. They valued service provider behaviors that are characteristic of family-centered care. Parents valued communication and their relationships with their children's therapists. Perceiving themselves as advocates for their children, parents also recognized the roles they had as learners because they expected therapists to teach them what to do with their children with Down syndrome. In general, parents valued a higher frequency of therapy services and choices in therapy providers. Although parents wanted therapists to practice principles of family-centered care, they did not necessarily see themselves as the experts on their children. Therefore, service providers, researchers, and professional organizations may need to re-examine the definition of expert in the practice of family-centered care.

Because families' needs and preferences varied according to their unique situations, a single, accurate framework of therapy services could not be developed from this study. Nevertheless, this qualitative study addressed a gap in the literature related to parental perceptions of therapy services for children with Down syndrome. After analyzing the parents' and therapists' interviews, the researcher was able to offer recommendations and clinical applications for service providers. Information gained from parents in this study will serve to improve the quality of therapy services that children with Down syndrome receive. The perspectives obtained from parent and therapist interviews establish a basis for development of a framework of family-centered therapy services in the future.



Health and environmental sciences, Communication, Family-centered care, Parent perceptions, Qualitative research, Relationships, Therapists