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developmental services and support (p. vii). The core of this definition of FCC is the relationship between families and health professionals. In this relationship, families are considered full partners in the provision of health care to children. In order to provide this type of care, professionals must have an attitude and practice of respect, collaboration, and support, and health care systems must provide support for staff, adequate facilities, innovative and accessible services, and opportunities for family participation on policy and facility decision-making boards. ACCH has continued its work in advocating for improved care for children and their families. FCC is currently funded as a National Center by the Bureau of Maternal and Child Health (http://www.familycenteredcare.org). FCC, as defined by these elements, was mandated legislatively as an expectation of service delivery for children with special health care needs in the Maternal and Child Health Block Grant Amendments in the Omnibus Budget Reconciliation Act of 1989 (P.L. 101–239), the Individuals with Disabilities Education Act (P.L. 101–476), the Developmental Disabilities Assistance and Bill of Rights Act (P.L. 101– 496) and the Mental Health Amendments of 1990 (P.L. 101–639) (Johnson, Jeppson, & Redburn, 1992). Furthermore, it has been suggested as the standard for all children and families who enter the health care system (Ahmann & Johnson, 2000). The concept of FCC as practiced by pediatric nurses has been analyzed based on published literature. In one analysis, pediatric nursing support for FCC consistent with the ACCH was found to have evolved over time beginning with an emphasis on parental involvement in care, moving to describing partnership between parents and nurses, and finally promoting provision of care to the family as a unit (Coyne, 1996). In another analysis of the literature, two approaches of pediatric nurses toward FCC were identified (Hutchfield, 1999). The first was based on respect and cooperation with the family with the nurse working in partnership with them. The second was less collaborative with the nurse determining the extent of the family’s involvement and caregiving. In a more recent concept analysis, FCC as practiced in neonatal intensive care units (NICU) was described using five defining characteristics: (1) “a respectful coalition between the health care team and the family with the goal of including the family in the decision-making and care of their infant,” (2) open communication between health care provider and family with a particular focus of the health care provider “actively seeking to understand the perceptions and concerns of families,” (3) being aware of and supporting family strengths, (4) “accepting individuality and diversity,” and (5) “recognizing the family as experts in the care of their child.” (Malusky, 2005, p. 27). In summary, the philosophy of care that was first described in the 1950s has gradually been introduced into practice and a formal description has been developed by a multidisciplinary group that promotes application in all settings in which children receive care. Professional nursing associations have adopted FCC as the basis of pediatric nursing practice, and there is evidence that the meaning of FCC within the nursing profession is consistent with FCC as defined by ACCH. Knowledge of the focus and findings of pediatric nursing research in FCC Harrison Page 3 J Pediatr Nurs. Author manuscript; available in PMC 2011 October 1. NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript will be helpful in evaluating the level of success in providing this type of care to children and families in various health care settings as well as identifying critical areas for future research. Methods To examine the current state of pediatric nursing research in FCC, a literature search was conducted entering the terms “family centered” or “family centred” in the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed. The CINAHL database indexes journals from the fields of nursing and allied health and includes all English language nursing journals. PubMed is a comprehensive database developed at the National Library of Medicine within the National Institutes of Health, and indexes thousands of national and international biomedical journals. The search terms were further limited to studies of children 18 years of age or younger and published between 1995 and 2006 to reflect the most recent research in pediatric populations. Abstracts from the articles retrieved in the initial search were reviewed. The final sample was limited to articles meeting the following criteria: (a) a nurse must have been first author, (b) the article must have been a research report, not a case study, instrument development project, or quality improvement project, (c) and the research must have been conducted in a developed country, to reduce confounding of results from the more recent adoption of FCC in developing countries. The resulting 30 articles were read and organized by the description of the sample being studied: nurses, families, or both. Each article was then reviewed using the framework of the elements of FCC as defined by ACCH (Shelton & Stepanek, 1994). State of the science related to FCC The sample of 30 papers will be reviewed in three sections: researcher observations of parentnurse interactions,
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