Being broken: A qualitative study exploring unexpected death in the Paediatric Intensive Care Unit and the family experience of care

BACKGROUND: The death of a child is a catastrophic event, and to experience this loss within the complex environment of a paediatric intensive care unit (PICU) can be highly traumatic for parents. With current bereavement literature heavily focused on children with known life-limiting conditions, the unique grief experience of unexpected child death is poorly understood. AIM: The aim of this study was to increase understanding of bereaved family members' experience of care in a PICU after the unexpected death of their child. METHODS: Two focus groups and two interviews were conducted with adult family members of children who had died unexpectedly in a tertiary PICU 6 months to 5 years prior. A qualitative, constructivist approach was adopted, utilising semistructured discussions following a facilitation guide underpinned by meaning reconstruction framework as the guiding grief theory. Data were analysed thematically. RESULTS: There were 15 participants, including four fathers, 10 mothers, and one family friend. Participants shared vivid and emotional recollections of the death of their child, with a central concept of being broken. Five key themes captured participants' experience of care in the PICU including respectful communication, meaningful time, memories we can live with, face(s) ofsupport, and involving the whole family. Participants described well-delivered elements of care that supported their bereavement needs, as well as poorly delivered care that contributed to their feelings of being broken. CONCLUSION: Family members valued care that was respectfully communicated by a trusted clinician, provided choice over significant time periods and meaning-making opportunities at the end of life, and was inclusive of all family members. These insights offer guidance to improve PICU bereavement practices for unexpected deaths.