The many roles of family members in "family-centered care"--part I.

Abstract

This article is the first in a series highlighting parental roles in family-centered care. A brief history of family-centered care from the 1960s to the present provides the context for the development of numerous roles parents have begun to play in the health care system. This background is followed by a mother's description of the steps in her own evolution as a "parent advocate." Deborah Dokken first developed her voice in the health care system as a parent to three premature infants, one of whom survived. Dokken used the skills she developed as a NICU parent to help other families through a peer-support program. She was subsequently invited to serve on a hospital's Ethics Committee; later to participate as a co-investigator and consultant on a palliative care education project; and most recently to be a member of several federal level health care advisory committees. Several themes in her development as a parent advocate included: readiness and commitment to assume new roles; the open support of at least one care professional in each setting; the identification of roles that matched her interest, background, and skills; and a growing conviction of her ability to contribute in a holistic way. Subsequent articles in this series will introduce other parents as they describe a variety of parental roles in family-centered care. We hope that illustration of these roles will inspire further involvement of parents in the pediatric health care system, at all levels.