Parent Perspectives on Care Received at Patient-Centered Medical Homes for Their Children with Special Health Care Needs
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Parent Perspectives on Care Received at Patient-Centered Medical Homes for Their Children with Special Health Care Needs

Published: Jan 01, 2014
Publisher: U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, Office of Disability, Aging and Long-Term Care Policy
Human Services Disability
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Authors

Dana Petersen

Lisa Schottenfeld

Caroline Massad Francis

Henry Ireys

Joseph Zickafoose

Key Findings

Key Findings:

  • Parents were generally unfamiliar with the concept of medical homes and were not aware that the practices were so designated.
  • 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.
  • 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.
  • 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.
  • Parent-leaders suggested expanding the reach of PCMH models into behavioral and mental health, social services, and education and expanding the roles for specialists.
  • 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.

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.

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