Parent Perspectives on Care Received at Patient-Centered Medical Homes for Their Children with Special Health Care Needs. IV. FINDINGS: PERSPECTIVES OF PARENT LEADERS


In addition to being able to comment on the aspects of care provided by PCMHs that would be most valuable to CSHCN and their families, parents who are leaders at advocacy and governmental organizations supporting CSHCN were also able to talk more generally about programmatic and policy issues related to medical home initiatives and models. The parent-leaders in our study spoke both on the basis of their first-hand experiences (because all were also parents of children with disabilities or special needs) and on behalf of other parents of CSHCN they routinely interact with.

All the parent-leaders we interviewed said the PCMH concept was valuable to CSHCN and their families. Some expressed the view that CSHCN, their families, and advocates have been the driving force behind the development of the PCMH models, because as one parent-leader said, "Children with special health care needs, by default, require all the things that define the medical home approach." In this section we describe parent-leaders' responses regarding important features of PCMH models for CSHCN, and ways that PCMH models and initiatives could be expanded to further benefit parents.

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