Background The ways parents are supported at the end of their child’s life and after death can profoundly affect the grieving process. Within children’s hospices cold bedrooms, cooling blankets and cuddle cots are provided to enable families to be close and have unrestricted access to their child after death. Such facilities are thought to support parents in the initial stages of grief. However, there is wide variation in practice and almost no evidence to inform parents’ decision-making during advance care planning.
Aim We aim to map current practice and explore parents’ experiences of using cold bedrooms and/or cooling blankets and/or cuddle cots – either in the hospice or at home – and the perceived impact of this on immediate and long term bereavement.
Methods This study comprises two stages. First, a cross-sectional survey to gather data on previous and current practice, and reasons for inclusion of these facilities within the portfolio of care and support, collected via structured telephone interviews with heads of care in all UK children’s hospices (n=52). Second, qualitative interviews with parents (n=30) exploring stories of the early days of bereavement and the support received from the hospice, their needs and desires in those early days and the perceived role of these facilities on early and subsequent experiences of bereavement. Survey data will be analysed using descriptive statistics and content analysis. Interviews will be analysed using narrative and thematic approaches.
Results We will not have data to report but hope presenting this work will alert others to this research and generate connections and meaningful conversations with others with an interest in this area.
Conclusions Findings will have implications for practice within children’s hospices and also for statutory services which are beginning to offer this provision.
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