Becoming a Team: The Nature of the Parent-Healthcare Provider Relationship when a Child is Dying in the Pediatric Intensive Care Unit

Abstract

PurposeTo explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. Design and MethodsConstructivist grounded theory was used to undertake this study. Semi-structured interviewers were conducted with 26 bereaved parents recruited from four Australian pediatric intensive care units. The constant comparative method, coupled with open, focused, and theoretical coding were used for data analysis. ResultsBecoming a team explores the changes that occurred to the parent-healthcare provider relationship when parents realized their child was dying and attempted to become part of their child's care team. When the focus of care changed from ‘life-saving’ to ‘end-of-life’, parents' perspectives and desires of their and the healthcare providers' roles changed. Parents' attempted to reconstruct their roles to match their changing perspectives, which may or may not have been successful, depending on their ability to successfully negotiate these roles with healthcare providers. ConclusionsFindings offer insights into parental understandings of both the parental and healthcare provider roles for parents of dying children in intensive care, and the ways in which the parent-healthcare provider relationships can influence and be influenced by changes to these roles. Practice ImplicationsSuccessful parent-healthcare provider relationships require an understanding of the parental and healthcare provider role from the parents' perspective. The meanings of the parental and healthcare provider roles should be explored with parents of dying children, and supported as much as possible to enable the development of a collaborative relationship.