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Congenital heart disease, Intensive care unit, Parents, Pediatric, Qualitative



  1. Fisk, Anna C. PhD, RN
  2. Mott, Sandra PhD, CPN, RN-BC
  3. Meyer, Shannon MPH
  4. Connor, Jean A. PhD, RN, CPNP, FAAN


Background/Introduction: One way the goal of establishing a partnership with families is accomplished, specific to the pediatric intensive care units, is 24-hour visitation and presence/participation during medical rounds and procedures. Despite the breadth of literature on the positive effect of parent presence, as well as the nearly nationwide adoption of 24-hour pediatric intensive care unit visitation, there is little to no research about how these changes have affected parents' perception of their role in the pediatric cardiac intensive care unit (PCICU).


Objectives/Aims: The purpose of this study was to explore and better understand the experience of parents in the PCICU within a patient/family-centered care model.


Methods: Using a qualitative descriptive approach, interviews were conducted with parents of children currently admitted as inpatients in the PCICU. Participants were asked broad, open-ended questions and probes to attain qualitative descriptions of their experiences and perceptions of their parental role in the PCICU. The research design for this study was based on naturalistic inquiry and was used to describe rather than interpret parental experiences in their own words.


Results: Eleven parents from 7 families were interviewed; parents described their role in terms of 2 main categories, as one who is an advocate and decision maker and one who provides emotional and physical support. Parents valued the expertise of the PCICU team but also shared the significance of the team recognizing their role as parents. Incorporating parents as an integral member of the health care team is a fundamental component to PCICU care.


Discussion/Conclusion: The role of parents is irreplaceable, particularly in the PCICU. The medical complexity of the intensive care can be a barrier to act as parents resulting in a disruption of family-centered care. Nursing staff avert this disruption through modeling parenting to their child's present circumstances and involvement in normal parenting tasks.