Welcoming expertise: Bereaved parents’ perceptions of the parent–healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit

Abstract

BackgroundEntering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child’s well-being, parents must navigate both a challenging environment and numerous new relationships with healthcare staff. How parents form relationships with staff and how they perceive both their own and the healthcare providers’ roles in this early stage of their paediatric intensive care journey is currently unknown. PurposeThis paper explores bereaved parents’ perceptions of their role and their relationships with healthcare providers when their child is admitted to the intensive care unit, as part of a larger study exploring their experiences when their child dies in intensive care. MethodsA constructivist grounded theory approach was utilised to recruit 26 bereaved parents from 4 Australian intensive care units. Parents participated in audio-recorded, semi-structured interviews lasting 90–150min. All data were analysed using the constant comparative analysis processes, supported by theoretical memos. ResultsUpon admission, parents viewed healthcare providers as experts, both of their child’s medical care and of the hospital system. This expertise was welcomed, with the parent–healthcare provider relationship developing around the child’s need for medical care. Parents engaged in 2 key behaviours in their relationships with staff: prioritising survival, and learning ‘the system’. Within each of these behaviours are several subcategories, including ‘Stepping back’, ‘Accepting restrictions’ and ‘Deferring to medical advice’. ConclusionsThe relationships between parents and staff shift and change across the child’s admission and subsequent death in the paediatric intensive care unit. However, upon admission, this relationship centres around the child’s potential survival and their need for medical care, and the parent’s recognition of the healthcare staff as experts of both the child’s care and the hospital system.