Abstract
Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but important element of hospice care. The aims of the study were to identify the practices of staff providing care after death in UK children's hospices, notably their moving and handling practices and their management of physiological deterioration, and to produce recommendations that promote safe and consistent practice in moving and handling and in managing physiological deterioration after death in UK children's hospices. An electronic survey was sent to all 54 UK children's hospices. Free-text responses were analysed using deductive content analysis and used to add depth to the quantitative findings. Out of 54 children's hospices, 33 responded to the survey. There were great variations in the way hospices delivered care after death, notably in length of stay, interventions and equipment. The lack of consistent practice grounded in evidence-based policy and training may mean that some staff experience higher levels of stress and anxiety than others and that some staff take risks when providing care after death, particularly to express empathy towards bereaved families. Recommendations are made about moving and handling a child's body after death and managing its physiological deterioration. Hospices can use these recommendations to develop policy and training, standardise what is expected of staff and support practitioners in adequately caring for children after death.
Highlights
Children’s hospices in the UK provide a range of services for babies, children and young people – in this article grouped as ‘children’ – who have a life-limiting or life-threatening condition
The lack of consistent practice grounded in evidence-based policy and training may mean that some staff experience higher levels of stress and anxiety than others and that some staff take risks when providing care after death, to express empathy towards bereaved families
Recommendations are made about moving and handling a child’s body after death and managing its physiological deterioration. Hospices can use these recommendations to develop policy and training, standardise what is expected of staff and support practitioners in adequately caring for children after death
Summary
Children’s hospices in the UK provide a range of services for babies, children and young people – in this article grouped as ‘children’ – who have a life-limiting or life-threatening condition. In 2019, Martin House Children’s Hospice, a regional hospice in the north of England, undertook a review of the moving and handling practices of its staff when caring for deceased children to inform the development of an internal policy on care after death. This was followed by a survey of UK children’s hospices to explore hospice practitioners’ perspectives on caring for a child’s body after death and on supporting bereaved families. Children’s hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist ‘cool bedrooms’. Care after death is a challenging but important element of hospice care
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