RESUMO
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.
Assuntos
Síndrome de Down , Criança , Humanos , Motivação , PaisRESUMO
This scoping review explores parents' experiences with implementing therapy home programs to determine the factors that influence compliance with incorporating therapy activities into their daily routines. Articles that described the experience of parents of children with Down syndrome with implementing an occupational therapy home program were included in this study. Peer-reviewed articles published within the past fifteen years (January 2003 - January 2018) were also included. Six articles met inclusion criteria. Three themes emerged: (1) emphasis on contextualization, (2) the parent-therapist relationship, and (3) emotional burden of parents. The findings suggest that practitioners develop interventions that are enfolded into the family's daily routine as well as considering the parents' emotional resources and learning style when designing therapy activities.
