Family-Centered Care From the Perspective of Parents of Children Cared for in a Pediatric Intensive Care Unit: An Integrative Review
Introduction
The Institute for Patient- and Family-Centered Care (IPFCC) defines family-centered care (FCC) as encompassing four core concepts: respect and dignity, information sharing, participation in care and decision-making, and collaboration between patients, families, and the healthcare team (www.ipfcc.org). In pediatrics, respect and dignity encompass how the child and the child's family are treated; information sharing involves communicating with and making information available to patients and families in formats they understand. Participation entails including the family in decision making and the child's care at the level the family chooses, and collaboration comprises partnering with families to improve policy, programs, and infrastructure. As an approach to care, the goal of FCC is to improve patient and family satisfaction and care outcomes; FCC has the potential to influence health care delivery at levels ranging from social and institutional policies to daily interpersonal interactions with staff and family (www.ipfcc.org).
Partnerships between families and the health care team are essential in pediatrics where children are often unable to self-report symptoms or treatment preferences due to their developmental stage or health status. Thus, parents are charged with communicating on the child's behalf, necessitating that parents be included in their child's care. Additionally, parents are most often responsible for the child's care after discharge, making critical that they are involved in care and decisions during the child's hospitalization to aid in the transition to home. Multiple professional organizations have released statements stressing the importance of adopting FCC as a policy in the pediatric hospital environment (e.g., The Institute of Medicine, 2001, American Academy of Pediatrics, 2003, American Academy of Pediatrics, 2012, American Nurses Association and Society of Pediatric Nurses, 2008, American Nurses Association, National Association of Pediatric Nurse Practitioners, and Society of Pediatric Nurses, 2015); however, the extent to which FCC as defined by the IPFCC is enacted in pediatric critical care units (PICU) is largely unknown. To inform understanding of FCC in pediatric intensive care, an integrative literature review was performed; this paper reports on the findings.
Section snippets
Background
As a mode of care delivery, FCC is relatively new in the care of pediatric patients and families. As recent as the mid-20th century children were cared for in hospital wards with no or minimal visitation allowed from family members. Parents of children with chronic health conditions and key advocacy groups joined together to bring about change and prioritized FCC in the late-20th century (Johnson, 1990). Slowly the care of hospitalized children has shifted to a more family-centered model;
Aims
The primary aim of this integrative review (Whittemore & Knafl, 2005) was to examine the extent to which published research articles concerning parent perspectives on their involvement in their child's care in a PICU demonstrate implementation of the four core concepts of FCC. Secondary aims were to determine if the definitions of these four concepts require refinement or expansion to incorporate parental perspectives and experiences, and whether the evidence suggests additional core concepts
Search Method
The searches were guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA: Moher, 2009). Search strategies were developed by the first author (CH) in consultation with a research librarian. The databases searched between July and October 2016 included: Cumulative Index to Nursing and Allied Health Literature (CINAHL), Excerpta Medica Database (Embase), PubMed, and PsycINFO. To be included in this review, reports had to be available in English, published between
Results
Table 1 summarizes the articles included in this integrative review. The IPFCC core concepts respect and dignity, information sharing, and participation were evident in the reports of parent perspectives; collaboration was mentioned just once in the implications section of one article. An additional review finding was the impact of the physical and cultural environment of the PICU on the parents' perception of FCC implementation. In the following sections we discuss our findings based on each
Discussion
This integrative review provides a comprehensive description of published reports regarding parent appraisals of implementation of the four IPFCC acknowledged core concepts in the PICU. Of the four core concepts, evidence of implementation being met and unmet with regards to respect and dignity, information sharing, and participation was present in the parent report articles and provide direction for advancing the implementation of FCC in the PICU. Evidence of collaboration as defined by the
Implications for Practice, Research and Education
This integrative review reveals that despite the push for FCC in the PICU environment, parent report indicates there is still much work to be done to ensure full implementation. Parents reported both positive and negative implementation of FCC as related to three of the IPFCC core concepts. This review adds a parent perspective to the body of FCC literature and highlights areas in which FCC implementation is both met and unmet. Additional research is needed to determine the knowledge base of
Strengths and Limitations
This integrative review is the first to report solely on parent perspectives of the implementation of FCC core concepts as defined by the IPFCC. Limitations include the analysis of published literature that may not have reported all of its data; authors of the included studies may have only reported on data relevant to their research question and in turn parent report data specific to FCC concepts were not included in their results. This integrative review contained a large number of
Conclusion
Implementation of family-centered care is considered the benchmark in caring for pediatric patients and their families. Parents of children cared for in the PICU often struggle with the severity of their child's illness and how to care for their child in this environment. The findings from this integrative review reveal per parent report that they encounter positive and negative implementation of core concepts of FCC while their child is in the PICU. Nurses and other health care providers must
Funding
The first author acknowledges training support from T32NR007091, awarded to The University of North Carolina at Chapel Hill School of Nursing by the National Institute of Nursing Research.
Acknowledgments
The authors wish to thank Cecelia Roscigno, PhD, RN, CNRN for her review of this manuscript and for offering insightful and constructive feedback.
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