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Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities
Michaela L Zajicek-Farber1, Gaetano R Lotrecchiano, Toby M Long
1National Catholic School of Social Service (NCSSS), The Catholic University of America (CUA), Shahan Hall #112, 620 Michigan Ave., NE, Washington, DC, 20064, USA, farber@cua.edu.
Insights
Family-centered care (FCC) in medical homes for children with neurodevelopmental disabilities (CNDD) shows strengths in partnerships but weaknesses in family needs and coordination. Improvements are needed for comprehensive CNDD care.
Area of Science:
- Pediatric Healthcare
- Family-Centered Care
- Neurodevelopmental Disabilities
Background:
- Life course theory emphasizes family-centered care (FCC) in medical homes for children with neurodevelopmental disabilities (CNDD).
- Understanding family perceptions of FCC is crucial for improving healthcare quality for CNDD.
- Existing medical homes for CNDD often lack comprehensive FCC elements.
Purpose of the Study:
- To explore parents' experiences and perceptions of family-centered care (FCC) within medical homes for children with neurodevelopmental disabilities (CNDD).
- To identify strengths and weaknesses of FCC in primary healthcare services for CNDD.
- To inform improvements in pediatric healthcare strategies for CNDD.
Main Methods:
- A structured questionnaire, the Family-Centered Care Self-Assessment Tool, was used.
- 122 parents of CNDD in a large urban area were surveyed between 2010-2012.
- Data focused on family-provider partnerships, care setting practices, and community services.
Main Results:
- Only 31% of parents were satisfied with the primary healthcare received by their CNDD.
- 16% of CNDD had most aspects of a medical home; 64% had some; 20% had none.
- Strengths were found in family-provider partnerships and meeting children's medical needs, but weaknesses existed in meeting family needs, coordination, and community resource support.
Conclusions:
- Quality medical homes for CNDD require robust FCC and strong partnerships among families, providers, and communities.
- Improvements are recommended in pediatric healthcare strategies to address the multifaceted needs of CNDD and their families.
- Valued partnerships with diverse families and community providers are essential for effective CNDD care.
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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