How family-centered care and being a good parent impacts parent experiences in the pediatric intensive care unit

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  • March 19, 2019
Creator
  • Hill, Carrie
    • Affiliation: School of Nursing
Abstract
  • Being a parent to a critically ill child requiring care in the pediatric intensive care unit (PICU) can be a stressful experience for parents. Family-centered care (FCC) has been shown to improve outcomes for pediatric patients and families, however there has been little research examining FCC in the PICU from the parent perspective. This dissertation consists of three distinct studies that examined the delivery of family-centered care and the parenting of a critically ill child in the PICU. The first study synthesized the research literature regarding FCC in the PICU from the parent perspective based on the Institute for Patient and Family Centered Care (IPFCC) identified core concepts (e.g., respect and dignity, information sharing, participation, and collaboration). This literature synthesis revealed that parents described both met and unmet needs regarding the implementation of FCC and led to development of a conceptual model of FCC in the PICU that included respect and dignity, information sharing, and participation as interacting with one another within the physical and cultural environment of the PICU. Based on the findings of the first study, the second study aimed to further develop the PICU FCC conceptual model and examined parental perspectives of the impact of the physical and cultural environment of the PICU in the delivery of FCC. The physical and cultural environment was found to exert both positive and negative contextual influence in the delivery of FCC per parent report. The third study examined and expanded on parental perception of the good parent construct as applied to parenting a child in the PICU over the first year of life. Previously identified good parent themes including being an advocate, focusing on my child’s quality of life, and being there for my child were present in parent interviews. Newly identified themes included knowing my child, developing relationships with other PICU infants and families, and developing a trusting relationship with members of the health care team. The findings of this dissertation add information to the PICU FCC body of literature by examining the delivery of FCC in the PICU from the parental perspective, acknowledging how the physical and cultural environments of the PICU impact parents of critically ill children, and informing how the good parent construct in the PICU evolves over time. Future studies are needed to explore facilitators and barriers to implementation of FCC in the PICU as conceptualized by the IPFCC and other professional organizations
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Advisor
  • Roscigno, Cecelia
  • Knafl, Kathleen
  • Santacroce, Sheila
  • Van Riper, Marcia
  • Docherty, Sharron
Degree
  • Doctor of Philosophy
Degree granting institution
  • University of North Carolina at Chapel Hill Graduate School
Graduation year
  • 2018
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