Related Experiment Video
Updated: Jun 25, 2026

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Parent and community participation in program design
Nancy Uding1, Gail M Kieckhefer, Cristine M Trahms
1Children's Hospital and Regional Medical Center, Seattle, Washington, USA.
Abstract:
Parents of children with chronic illnesses face many challenges not faced by other parents. A family-centered parent support and education program, Building on Family Strengths (BFS), was designed to help parents meet these challenges by gaining new skills and learning new ways to support their children. BFS researchers involved potential participant families in the refinement of the BFS curriculum to make it truly family centered. The article reports major feedback received from parent focus groups, leaders in several cultural communities, and participants in a pilot class as BFS underwent final refinement. This feedback greatly influences the development of the BFS curriculum, as without it the final product going into a randomized clinical trial would be less attuned to the needs of parents of children with chronic illnesses. Other researchers and family educators may find this feedback useful as they improve their own research and program offerings.
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