Dana Petersen, Lisa Schottenfeld, Caroline Massad Francis, Henry Ireys and Joseph Zickafoose
Mathematica Policy Research
January 2014
Parents are important stakeholders in the process of implementing medical homes for children, especially for children with special health care needs (CSHCN). Some medical home initiatives, however, may not adequately take parent and family perspectives into account (Zickafoose et al., 2013; Bechtel & Ness, 2010; Berenson et al., 2008). As patient-centered medical homes (PCMHs) become a more prevalent pathway for health care delivery system reform, information about parents' experiences with and expectations for their children's care in these settings can help ensure that PCMH initiatives are designed and implemented to meet consumers' needs (Detsky, 2011; Bechtel & Ness, 2010).
The purpose of this study, sponsored by the Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services as part of the Center on Excellence in Disabilities Research, is to describe parents' perspectives on the care received at medical homes and offer suggestions for ensuring that PCMH models benefit CSHCN and their families. The study is based on key informant discussions with a convenience sample of nine parents of CSHCN receiving primary care at practices recognized as medical homes and six parents who have become leaders in consumer organizations. The findings include the following:
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Parents were generally unfamiliar with the concept of medical homes and were not aware that the practices were so designated.
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Parents cited having a primary care provider who knew and cared about their family, had both expertise in and a willingness to learn more about their child's special needs, respected their own knowledge and opinions, and engaged them in shared decision-making as characteristics that mattered to them.
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Parents, when discussing practices as a whole, stressed the importance of continuity in care, welcoming and well-informed care teams, care coordination support, easy access, and linkages between the practice and other community supports.
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Parent-leaders emphasized the value of PCMH models because they place children and their families at the center of care and highlighted care coordination as a key feature.
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Parent-leaders suggested expanding the reach of PCMH models into behavioral and mental health, social services, and education and expanding the roles for specialists.
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Parent-leaders recommended building parents' awareness of the PCMH concept, engaging parents in the PCMH-recognition process, and using parent input to guide quality improvement.
These findings must be interpreted in the context of our methods. We interviewed a very small sample of parents whose children were receiving care from an even smaller number of practices formally recognized as a PCMH for at least two years. As a result, our findings highlight key consumer perspectives but they cannot be viewed as generally representative of parents of CSHCN.
Our findings suggest that policymakers and program administrators who lead transformation efforts may consider three areas of action: (1) educating parents about the features of medical homes to help them make informed health care choices; (2) providing practices with information about the value of including parents as partners both in the care their children receive and as contributors to quality improvement activities; and (3) developing strategies to incentivize practices to include parent feedback as an integral part of continuous quality improvement.