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Helping parents process the death of their child is crucial

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How parents are supported immediately following the death of a child can have a profound impact on how they respond and adjust to their new reality. In this blog to mark Dying Matters week, Dr Julia Hackett from the Martin House Research Centre explores how providing cooling facilities to extend the time before a child’s body is transferred to a funeral director/funeral can have a beneficial effect on how parents start to accept the reality of their child’s death.

The death of a baby or child is a profound and distressing experience faced by thousands of parents every year. The relationship between parents and their children is among the most intense in life. Therefore, it is no surprise that when compared to other types of bereavement, parental bereavement carries the greatest risk for long-term impacts on mental and physical health. When a child dies, parents lose a part of themselves and the ability to carry out their parenting role as they imagined it would be. This can result in a destroyed sense of self, invalidation of world views, affect parents’ ability to work, and relationships can become strained. How parents respond and adjust to their child’s death also affects siblings’ outcomes. Consequently, the potential impacts are wide-ranging. There is growing evidence that the ways in which parents are supported immediately after their child’s death, and into longer-term, impacts outcomes.

In the last two decades there has been significant shifts in understandings of grief. Previously it was believed that parents should not see, or should be quickly separated from their child’s body, to prevent attachment and enable ‘recovery’. However, notions of stages of grief, with ‘recovery’ and ‘closure’ as the end point, are no longer adhered to. Spending time with the body is now thought of as having the potential to support acceptance of the reality of death. Evidence on the value and potential benefits to parents of seeing and holding their dead child in the period immediately following death has meant that providing this opportunity is now widely accepted as good practice in many countries.

Critically, parents also report that they want to spend time with their dead child. However, whilst many newly bereaved parents are now given the opportunity to do this, it is typically limited to a few hours, at most. This is because of the need to cool the body to prevent deterioration. In the UK, all children’s hospices offer parents the use of cooling facilities to extend this period of time to a number of days, before the child’s body is transferred to the funeral director/funeral. Cooling facilities can be used in the hospice or the home, regardless of place of death, with many hospices accepting referrals from NHS services of bereaved families not previously known to them. However, this relies on referring services being aware of this type of provision, what it can offer families, and being confident in introducing this concept to families at a time when they are at their most vulnerable. If awareness is raised about the benefits of this provision, where a child’s death is anticipated, decisions regarding their use can also be incorporated into Advance Care Planning.

Despite longstanding use by UK children’s hospices, there is limited evidence on provision or parental experiences and anecdotally differences are reported in practice between hospices. In response to this, myself and colleagues from the Martin House Research Centre, carried out a study across the UK to generate the evidence needed to support parents during this time. We surveyed children’s hospices about their provision and practices regarding cooling facilities and spoke to bereaved parents who had used cooling facilities provided by a UK children’s hospices. The results were written up for a paper in Palliative Medicine earlier this year.

We found that provision and usage of, and access to these facilities is varied. In particular, there were large variations in the duration of time families were able, and wanted, to use cooling facilities. This questions the appropriateness of imposing a limit on duration of use of cooling facilities where that is being done in parents’ ‘best interests’, as opposed to managing demands for these facilities. There were also variations in the models of care for families who decide to use cooling facilities at home as opposed to in a hospice. Both hospices and parents believed that the hospice setting, as a private and separate space, supported parents in adjusting to a different life without their child. Being in a setting where death was normalised and staff were empathetic and highly experienced, supported engagement in grief work. Hospice staff are able to guide parents and their families, throughout this time, offering guidance and suggestions on how to do this from a position of expertise where death is the norm. However, this has implications for parents when making decisions about whether to use cooling facilities in the hospice or at home in terms of what their expectations and wishes are for support during this time.

There was clear evidence that using a cooling facility supported parents to begin to engage with grief tasks, something which is required if people are to successfully adapt to the experience of bereavement. This suggests that as well as easing the immediate experience – which in itself may position parents to be better able to cope with their grief – use of cooling facilities may influence bereavement outcomes in the longer term. This highlights that cooling facilities should not simply be regarded as allowing parents more time with their child following their death.

Importantly, of the parents we spoke to, all held the view that the opportunity to use a cooling facility should be routinely offered to bereaved parents, regardless of the nature of the child’s death. While more evidence is needed to fully understand these families’ experiences, it seems clear that the current research suggests a strong case for extending the availability of these facilities. Whilst statutory services are beginning to offer this provision, the models of care for families are very different. There is possibly an argument that statutory services should expand their own role and contribution to support bereaved parents so that the financial burden is not exclusively placed on the charitable sector. However, how this might happen in practice needs careful thought and debate, but evidence of the lasting impacts of bereavement on parents, and, as a consequence, siblings, and society, strengthens the case for this crucial debate to happen with some urgency.

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