Background UK children’s hospices offer parents the opportunity to extend the period with their child after their death by using cooling facilities to slow deterioration. The emergence of portable cooling facilities means that parents have the choice over whether they use these at the hospice or at home. Evidence is needed to support parents to make informed decisions about where to use a cooling facility.
Aim As part of a wider study of bereaved parents’ experiences of using cooling facilities, to describe what is supportive, positive and challenging about using cooling facilities in different settings.
Methods Multi-site study involving in-depth interviews with parents bereaved in the previous three years. Data analysis employed narrative and thematic approaches. Eight hospices supported recruitment.
Results Twenty-two mothers and eight fathers were recruited. Twenty families used cooling facilities at a hospice and three in their home. Aspects of the setting offered practical and emotional support or created challenges. Where parents used cooling facilities at a hospice, being in a setting where death was normalised and they could retreat from the public gaze was valued. Staff were empathetic, experienced, spontaneously responded to needs, and provided support to siblings. In contrast approaches to supporting families at home were much lighter touch. For these parents, being together in the family home felt right, and they could provide some normality for siblings. Parents attached symbolic meaning to the setting, some believed their child belonged at home, in a place that their child knew. Others did not want memories of their dead child in their home.
Conclusions Differences in what each setting can offer bereaved parents were evident, however, more evidence is needed to support parental decision-making and enable staff to support parents’ choices.
|Period||3 Nov 2021 → 5 Nov 2021|
|Event title||2021 Hospice UK National Conference: A New World – Changing the landscape in end of life care|
|Location||Liverpool, United Kingdom|