Influence of Family Diversity on Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities

Background: Research on health disparities has shown links between non-white race/ethnicity status and service inequities and family centeredness (FCC) for families rearing children with neurodevelopmental developmental disabilities (CNDD) (Nicholas, Hendson, & Reis, 2014). CNDD have medical diagnoses that include autism, attention deficit hyperactivity disorder, Down syndrome, cerebral palsy, intellectual delay, and other biologically based disorders of brain development. Examining and addressing cultural issues tied to family race/ethnicity are important aspects to be considered in quality delivery of medical home services to CNDD and their families. To better understand family satisfaction with family centered care (FCC) in medical homes of CNDD, this field study investigated whether family race/ethnicity, in addition to parent and child characteristics, significantly influenced family perceptions of FCC in three areas of primary health care: family-provider partnership (FPP), care practices and policies (CPP), and community coordination and follow-up (CCF). Based on the life course theory for optimizing children's developmental trajectories (Halfon et al., 2014), examining connections between family race/ethnicity and satisfaction with primary health care allows for identification of strengths and weaknesses in medical home services delivery, and offers opportunities to social workers and other healthcare professionals for family support and improvement in outcomes for CNDD.

Methodology: The study developed an original empirical survey in 2010-2012, using a structured questionnaire on Family-Centered-Care-Self-Assessment that cover three areas of health care delivery (FPP, CPP, CCF), along with a question on family satisfaction with medical homes services for child, and family-related demographics.  Medical home services were defined based on the National Center for Medical Home Implementation (2014). Family Voices, a national advocacy organization promoting the well-being of CNDD and their families, developed Family-Centered-Care-Self-Assessment. Using key-informant recruiters, 122 families met study-criteria, provided Informed Consent, approved by IRB, and provided their answers anonymously in around 40 minutes in a large urban city area. Multivariate analyses were used to investigate the contribution of family race/ethnicity to family centeredness in FPP, CPP, and CFF, and to parental satisfaction in the receipt of medical home services for child, while also controlling for selected demographics. Race/ethnicity was based on self-identification of 34% African American, 33% White-Caucasian, and 33% Other Non-White families.

Results: Adjusted multivariate analyses revealed that family race/ethnicity significantly contributed to families' perceptions of family centeredness in CPP and CCF areas in primary health care delivery and also to parental satisfaction with medical homes of CNDD. When compared to White families, all study Non-White families reported more difficulties in CPP and CFF and had considerably lower satisfaction. On the other hand, family race/ethnicity did not significantly contribute to family views on FPP, suggesting that some progress in provider sensitivity to family needs of CNDD is being made. Authors address study strengths and limitations, and make recommendation for future research. 

Implications: Health care providers need to continue being vigilant in providing culturally sensitive care. To support FCC practices and policies, the study advances a checklist of ten essential areas that promote culturally sensitive interactions between families of CNDD and their health care providers.