The changing nature of relationships between parents and healthcare providers when a child dies in the paediatric intensive care unit

摘要

Abstract Aim To explore bereaved parents’ interactions with healthcare providers when a child dies in a paediatric intensive care unit. Background Although most children admitted to a paediatric intensive care unit will survive, 2–5% will die during their stay. The parents of these children interact and form relationships with numerous healthcare staff during their child's illness and death. Although previous studies have explored the parental experience of child death in intensive care generally, the nature of their relationships with healthcare providers during this time remains unknown. Design This study used a constructivist grounded theory approach. Methods Data were collected via semi‐structured, audio‐recorded interviews with 26 bereaved parents from four paediatric intensive care units over 18?months in 2015–2016. Constant comparative analysis and theoretical memos were used to analyse the data. Findings The theory “Transitional togetherness” demonstrates the changing nature of the parent–healthcare provider relationship across three key phases of the parents’ journey. Phase one, “Welcoming expertise,” focuses on the child's medical needs, with the healthcare provider dominant in the relationship. Phase two, “Becoming a team,” centres around the parents’ need to recreate a parental role and work collaboratively with healthcare providers. Finally, “Gradually disengaging” describes the parents’ desire for the relationship to continue after the child's death as a source of support until no longer needed. Conclusions Findings from this study offer valuable insights into the changing nature of the parent–healthcare provider relationship and highlight the key foci of the relationship at each stage of the parental journey.