An adult hand holding a child's hand

Planning for the end of a child's life

When a family is faced with the prospect of the death of a child, it is important that they are offered the best possible support and advice to enable them to plan how they will deal with this traumatic period, and that their wishes are respected and acted upon. A researcher at the University of the West of England (UWE Bristol) has investigated the extent to which this has been achieved by a number of local care providers.

Dr Antonia Beringer, of the Faculty of Health and Applied Sciences, consulted a range of care professionals to prepare guidance on this sensitive issue, and then wanted to examine how effectively it was being followed. The aim of the guidance was to enable children to be cared for in a location chosen by their family, so that when they reached the end of their lives more of them would be able to do so at home or in a hospice, for example, rather than in hospital. Her research was supported by the University’s Early Career Researcher Award scheme.

Working toward improvements

Working with a research collaborator, an NHS doctor specialising in children palliative care, she examined the case notes from a variety of care providers relating to 48 children who had died within a defined local area over a specific period of time. She compared the notes with a set of eight standards set out in nationally agreed policy guidelines.

The review revealed many cases where families had received sensitive and responsive end-of-life care planning. For the majority of cases, she found direct evidence that plans had been discussed, although there were variations in the way these had been documented. The plans were often buried within the narrative of the notes, making them hard to find. It was also noted that 19 of the children had died in hospital, despite this being the place of choice for only one family. In addition, little evidence of the child's own wishes for their care could be found. These were all indications that planning could be improved in a number of ways.

Impact and further development

Since Dr Beringer's work, there have been important initiatives to address the concerns raised by her findings, including the provision of funds for better training of health professionals and the development of further guidance documents for families and professionals.

As well as identifying ways to improve the care that is given under these very difficult circumstances, the financial support from the University has enabled Dr Beringer to build continuing collaborative research relationships with clinicians and practitioners in children's palliative care.

"It was a great advantage to be able to go to these partners with funding already secured," says Dr Beringer. "It has led to further project work and more grants with the people whose services were involved in the original audit."

These further grants include projects with Children's Hospice South West, the Children's Palliative Care Fund, Jessie May Trust and Rainbow Trust Children's Charity. "These are directly attributable to my initial funding from the University," says Dr Beringer.

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