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Connections between Family Centered Care and Medical Homes of Children with Neurodevelopmental Disabilities: Experiences of Diverse Families

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Abstract

Cultural issues tied to race/ethnicity are important aspects in delivering medical home services to children with neurodevelopmental disabilities and their families. To better understand family satisfaction with family centered care (FCC) in medical homes of children with disabilities, this study investigated whether family race/ethnicity, in addition to parent and child characteristics, significantly influenced family perceptions of FCC in three areas: family-provider partnership, care setting practices and policies, and community coordination and follow-up. Based on the life course theory for optimizing children's developmental trajectories, examining connections between family race/ethnicity and satisfaction with health care allows for identification of strengths and weaknesses in medical home services delivery, and offers opportunities for family support and improvement in outcomes for children with disabilities. This study developed an original empirical survey using a structured questionnaire developed by Family Voices, a national advocacy organization dedicated to promoting the well-being of children with disabilities and their families. The study collected data for 122 families in a large urban area in the northeastern United States. Multivariate analyses revealed that family race/ethnicity significantly contributed to the prediction of parental satisfaction with medical homes of children with disabilities, and to families' perceptions of FCC in care setting practices and policies, and community coordination and followup, but not to family provider partnership. Non-White families reported significantly lower satisfaction. Discussion emphasizes that health care providers need to become more vigilant in providing culturally sensitive care. To enhance FCC practices and policies, the study advances a checklist of ten essential areas that promote culturally sensitive interactions between families of children with disabilities and their medical and non-medical health care providers.

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Authors and Affiliations

  1. National Catholic School of Social Service (NCSSS), The Catholic University of America (CUA), Washington, DC, USA

    Michaela L. Zajicek-Farber

  2. Center for Child and Human Development, Georgetown University (GU), Washington, DC, USA

    Toby M. Long

  3. Department of Clinical Research and Leadership and of Pediatrics, School of Medicine and Health Sciences, George Washington University (GWU), Washington, DC, USA

    Gaetano R. Lotrecchiano

  4. ALL Pediatrics, Alexandria, VA, USA

    Jon Matthew Farber

  5. National Catholic School of Social Service (NCSSS), The Catholic University of America (CUA), Washington, DC, USA

    Erika Rodkey

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Zajicek-Farber, M.L., Long, T.M., Lotrecchiano, G.R. et al. Connections between Family Centered Care and Medical Homes of Children with Neurodevelopmental Disabilities: Experiences of Diverse Families. J Child Fam Stud 26, 1445–1459 (2017). https://doi.org/10.1007/s10826-017-0662-3

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