• David A Kube, Elizabeth A Bishop, Jenness M Roth, and Frederick B Palmer.
• Division of Neurodevelopmental Disabilities, Department of Pediatrics, College of Medicine, Boling Center for Developmental Disabilities, The University of Tennessee Health Science Center, 711 Jefferson Ave., Memphis, TN 38105, USA. dkube@uthsc.edu
• Matern Child Health J. 2013 Sep 1;17(7):1304-8.

AbstractFamilies of children with special health care needs (CSHCN) want to partner with their physicians to provide family-centered care and a medical home for their children. A parent group independently developed a parent-led curriculum to assist in the training of residents for this purpose. The objective of this study was to evaluate pediatric residents' satisfaction with and perceived relevance of this parent-led curriculum demonstrating the effects a disability has on the child and family. From 2002 to 2009, 188 residents participated in a parent interview and a home visit with families of CSHCN through Project DOCC(SM) (Delivery of Chronic Care), as part of their required developmental disabilities rotation. Residents voluntarily completed anonymous quantitative surveys regarding the parent interview and home visit, rating the Parent Presenters, Information Provided, Depth of Coverage, Relevance to Future Practice, and Overall Satisfaction. Scores were reported on a Likert scale: 1 = Poor, 2 = Fair, 3 = Satisfactory, 4 = Very Good, and 5 = Excellent. Qualitative comments regarding the residents' experience on the quality and relevance of the curriculum were also received. 112 (60 %) residents completed the survey for the parent interview and 96 (51 %) for the home visit. Average scores and standard deviations were calculated for each variable. Results for the parent interview: Presenters = 4.76 ± 0.52, Information = 4.40 ± 0.73, Depth = 4.59 ± 0.67, Relevance = 4.47 ± 0.73, and Satisfaction = 4.64 ± 0.60. Results for the home visit: Presenters = 4.68 ± 0.62, Information = 4.25 ± 0.89, Depth = 4.46 ± 0.82, Relevance = 4.40 ± 0.75, and Satisfaction = 4.49 ± 0.74. The overall experience was favorable with qualitative comments such as: excellent, eye opening, humbling, informative, valuable, and relevant. Pediatric residents rated this parent-led curriculum "very good" to "excellent" overall. Residents were highly satisfied with all areas assessed and felt that it was relevant to their future practices. Parent-led curricula regarding care of children with disabilities can be incorporated into and enhance pediatric resident training programs.

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