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133rd Annual Meeting & Exposition
December 10-14, 2005
Nancy L. Winterbauer, PhD1, Susan L. Collini, MPH1, Barbara S. Barry, MPH1, Kristi L. Stowers, BSH1, Suzanne P. Murphy, PhD, RN2, and David L. Wood, MD, MPH3. (1) Institute for Health, Policy and Evaluation Research, Duval County Health Department, 900 University Blvd, North, Suite 604, Jacksonville, FL 32211, 904.630.3269, firstname.lastname@example.org, (2) Duval County Health Department, Center for Child and Family Health Services Research, 515 W. 6th Street, Jacksonville, FL 32206, (3) University of Florida & Duval County Health Department, Division of Community Pediatrics, 515 W. 6th Street, Jacksonville, FL 32206
Background: Family-centered care is essential to the medical home concept, which envisions “parents as partners” with health providers in decision-making. Yet, providers and their patients' families, particularly families of children with special health care needs (CSHCN), often inhabit dissimilar cultural worlds. This may be especially true for low income families who do not have the means to be selective in their choice of provider.
Objective: To describe family and provider perceptions that affect family-centered care of CSHCN.
Methods: Through a medical home evaluation study, we surveyed 262 families of CSHCN, all clients of the State Title V - CSHCN program, in six pediatric practices. Survey elements included demographics, care coordination and planning, and the family-physician relationship. Results were contextualized through focus group interviews with families (n=30) and in-depth interviews with pediatricians and clinic staff (n=11).
Results: Forty-five percent of families were headed by single-parents and 32% of all families had more than one CSHCN present in the household. Survey data revealed strengths and weaknesses in the family-physician relationship. Qualitative data suggest that providers often, and in a variety of ways, described parents as being either “good” (i.e. compliant) or “bad” (i.e. non-compliant), while parents described the demands of caring for a CSHCN.
Conclusion: Provider perceptions of “bad” mothers challenge the formation of trusting and respectful relationships between families and physicians that are necessary to provide children with optimal health care. Creating a family-centered medical home will require significant investment in training and relationship-building with families and their providers.
Keywords: Children With Special Needs, Family Violence
Presenting author's disclosure statement:
I wish to disclose that I have NO financial interests or other relationship with the manufactures of commercial products, suppliers of commercial services or commercial supporters.
The 133rd Annual Meeting & Exposition (December 10-14, 2005) of APHA