Bereaved parents of babies in clinical trials want ongoing involvement in research says NIHR funded study

There is a lot of research that we hear about in the media which enthrals and amazes with big numbers, amazing finds and clever ideas isn’t there?

And then there is research that I find genuinely affecting for one reason or another. More often than not, because it tells us something about the human condition.  Sorry if that sounds a bit over-sentimental.

But it’s how I felt when I read this study about bereaved parents wanting ongoing involvement in research after the death of their child.  The Bereavement and Randomised Controlled Trials Study (BRACELET) study – the first to look at death and bereavement in the context of clinical trials involving babies and children – was led by the London School of Hygiene & Tropical Medicine with researchers from UCL, Oxford, Newcastle, Cambridge. 

During the seven year study, the researchers conducted over 100 interviews with clinicians, trial team members and bereaved parents from five neonatal clinical trials to find out about their experiences and you can read the full paper on the NIHR Journals Library.  I should add that the study was funded by the NIHR Health Technology Assessment Programme.

The study found that for many parents, the fact that their child was on a trial receded into the background during the time they were alive and being treated.  However, after the death of their baby, they were positive about wanting contact and almost all wanted to see the trial results.  To quote the news release:

‘These parents attached a high level of importance to being sent the trial results as an acknowledgement of their baby’s contribution to research for a complex array of reasons, including as a basic courtesy from the researchers, and as an opportunity for further remembrance and commemoration.’

The paper notes that there was great variety between the trials on whether bereaved parents were contacted afterwards. The study team calls on clinicians and researchers to develop a co-ordinated strategy to ensure that parents have are given the option of remaining in contact and accessing trials results afterwards. 

Dr Claire Snowdon, lead author on the paper is quoted as saying: “The BRACELET Study has also shown that bereaved parents of babies in clinical trials are important stakeholders in research, and the practice of routinely excluding them from studies of how trials should be conducted should be changed.”

 

Hear, hear.

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