Journal of Child and Family Studies

, Volume 26, Issue 5, pp 1445–1459 | Cite as

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

  • Michaela L. Zajicek-Farber
  • Toby M. Long
  • Gaetano R. Lotrecchiano
  • Jon Matthew Farber
  • Erika Rodkey
Original Paper
First Online:
  • 380 Downloads

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.

Keywords

Children Family centered care (FCC) Medical home Disabilities Race 
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Notes

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no competing interests.

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Copyright information

© Springer Science+Business Media New York 2017

Authors and Affiliations

  • Michaela L. Zajicek-Farber
    • 1
  • Toby M. Long
    • 2
  • Gaetano R. Lotrecchiano
    • 3
  • Jon Matthew Farber
    • 4
  • Erika Rodkey
    • 5
  1. 1.National Catholic School of Social Service (NCSSS)The Catholic University of America (CUA)WashingtonUSA
  2. 2.Center for Child and Human DevelopmentGeorgetown University (GU)WashingtonUSA
  3. 3.Department of Clinical Research and Leadership and of Pediatrics, School of Medicine and Health SciencesGeorge Washington University (GWU)WashingtonUSA
  4. 4.ALL PediatricsAlexandriaUSA
  5. 5.National Catholic School of Social Service (NCSSS)The Catholic University of America (CUA)WashingtonUSA

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