Posted on 25 January 2022
The Early Days study - conducted by researchers at the University of York’s Martin House Research Centre - is the first to explore in-depth parents’ experiences of hospice bereavement care in the hours and days immediately after the loss of their baby or child.
Crucially, as part of this care, the child stays at a hospice, or at home, rather than being taken to a funeral director. This is made possible through the use of ‘cooling facilities’ (e.g. cooled ‘bedrooms’, portable ‘cooling’ cots, or blankets). All UK children’s hospices offer these facilities to bereaved parents.
The study interviewed thirty bereaved mothers and fathers from around the UK.
It found that, whilst parents varied in how much time they spent with their child, all drew great comfort in the fact that they could visit their baby or child at any time and that they remained in a home-like environment, or could be with them at home.
One parent said: "It helped me considerably because I was able to go in and just be…to hold him, to be near to him, to speak to him, to caress him, to look at him. Because it just allowed us to let go, to say goodbye."
Parents believed that having unrushed time to say ‘goodbye’ and prepare themselves for their child’s transfer to a funeral directors had softened their anguish: "It was like an airbag: it cushioned the blow".
Another reflected: "It gave us time, knowing he’s gone but you’ve still got longer, which was everything."
All those taking part in the study believed all bereaved parents should have the opportunity to use cooling facilities provided by children’s hospices.
Importantly, the findings also indicate that using cooling facilities may have longer-term, positive impacts because it helps parents in the initial grieving process, including accepting the reality of their loss, processing their pain, and mentally preparing for the changes their loss would bring to their lives. The skills and expertise of hospice staff often enabled and supported this.
Mementos and memories made during the time also brought enduring comfort and benefit. As one parent put it: "We have something positive to reflect upon following something so harsh."
The study lead, Professor Bryony Beresford, said: "We know that the loss of a baby or child has significant and lasting impacts on parents. This study shows that what happens in the hours and days immediately afterwards can make a real difference to parents, both at the time and into the longer term."
Dr Julia Hackett, from the Department of Health Sciences, who also worked on the study, said: "Whilst children’s hospices typically offer their cooling facilities to any bereaved family – regardless of where the child died, or the circumstance – we know that parents not already known to a hospice may not always be offered this opportunity.
"However, increasing access to children’s hospices’ cooling facilities has its challenges, including the increased resources this would require. This, in turn, raises questions about whether the costs of these facilities should continue to fall exclusively on the charitable sector."