Elsevier

Journal of Pediatric Nursing

Volume 41, July–August 2018, Pages 22-33
Journal of Pediatric Nursing

Family-Centered Care From the Perspective of Parents of Children Cared for in a Pediatric Intensive Care Unit: An Integrative Review

https://doi.org/10.1016/j.pedn.2017.11.007Get rights and content

Highlights

  • A revised conceptualization of FCC in the PICU is proposed.

  • Parents indicate that the environment of care greatly impacts the delivery of FCC.

  • Parents report positive and negative encounters with FCC in the PICU.

Abstract

Problem

The Institute for Patient- and Family-Centered Care's (IPFCC) definition of family-centered care (FCC) includes the following four core concepts: respect and dignity, information sharing, participation, and collaboration. To date, research has focused on the provider experience of FCC in the PICU; little is known about how parents of children hospitalized in the pediatric intensive care unit (PICU) experience FCC.

Eligibility Criteria

Articles were included if they were published between 2006 and 2016, included qualitative, quantitative, or mixed methods results, related to care received in a PICU, and included results that were from a parent perspective.

Sample

49 articles from 44 studies were included in this review; 32 used qualitative/mixed methods and 17 used quantitative designs.

Results

The concepts of respect and dignity, information sharing, and participation were well represented in the literature, as parents reported having both met and unmet needs in relation to FCC. While not explicitly defined in the IPFCC core concepts, parents frequently reported on the environment of care and its impact on their FCC experience.

Conclusions

As evidenced by this synthesis, parents of critically ill children report both positive and negative FCC experiences relating to the core concepts outlined by the IPFCC.

Implications

There is a need for better understanding of how parents perceive their involvement in the care of their critically ill child, additionally; the IPFCC core concepts should be refined to explicitly include the importance of the environment of care.

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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