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Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities

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Abstract

Life course theory sets the framework for strong inclusion of family centered care (FCC) in quality medical homes of children with neurodevelopmental disabilities (CNDD). The purpose of this study was to explore the perceptions of families with their experiences of FCC in medical homes for CNDD. Using a structured questionnaire, the Family-Centered Care Self-Assessment Tool developed by Family Voices, this study surveyed 122 parents of CNDD in a large urban area during 2010–2012. Data collected information on FCC in the provision of primary health care services for CNDD and focused on family-provider partnerships, care setting practices and policies, and community services. Frequency analysis classified participants’ responses as strengths in the “most of the time” range, and weaknesses in the “never” range. Only 31 % of parents were satisfied with the primary health care their CNDD received. Based on an accepted definition of medical home services, 16 % of parents reported their CNDD had most aspects of a medical home, 64 % had some, and 20 % had none. Strengths in FCC were primarily evident in the family-provider partnership and care settings when focused on meeting the medical care needs of the child. Weaknesses in FCC were noted in meeting the needs of families, coordination, follow-up, and support with community resources. Improvements in key pediatric health care strategies for CNDD are recommended. CNDD and their families have multifaceted needs that require strong partnerships among parents, providers, and communities. Quality medical homes must include FCC and valued partnerships with diverse families and community-based providers.

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Acknowledgments

We thank Dr. Mark Batshaw at Children’s National Medical Center for spearheading the development of the LEND program, which created the impetus for the study. We thank the families in LEND at Children’s National, who provided input for the study. We thank LEND interns, Ajita Robinson, MA, a doctoral student at GWU and Janelle Nanavati, MSW, a doctoral student at CUA and a LEND trainee, and Sarah Peterson, MSW, a Ford scholar at CUA – NCSSS, who provided project assistance.

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Authors and Affiliations

  1. National Catholic School of Social Service (NCSSS), The Catholic University of America (CUA), Shahan Hall #112, 620 Michigan Ave., NE, Washington, DC, 20064, USA

    Michaela L. Zajicek-Farber

  2. 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

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

    Toby M. Long

  4. ALL Pediatrics, Alexandria, VA, USA

    Jon Matthew Farber

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  1. Michaela L. Zajicek-Farber
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Correspondence to Michaela L. Zajicek-Farber.

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Zajicek-Farber, M.L., Lotrecchiano, G.R., Long, T.M. et al. Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities. Matern Child Health J 19, 1744–1755 (2015). https://doi.org/10.1007/s10995-015-1688-z

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