Lessons to be learned from children and adolescents approaching end of life – An interview with Dr Lorna Fraser, winner of the 2018 EAPC Post-Doctoral Award

Highlights of every EAPC Congress are the EAPC Researcher Awards, which recognise and support the work of scientists and clinicians who make an outstanding contribution to palliative care research. 

We talk to Dr Lorna Fraser, winner of the 2018 EAPC Post-Doctoral Award, about her work as a Senior Lecturer and Director of the Martin House Research Centre in the Department of Health Sciences at the University of York, UK. Lorna received the 2018 EAPC Post-Doctoral Award yesterday in Bern.

We believe you started out in clinical paediatrics. What motivated you to move on from clinical work to your current academic role?

Dr Lorna Fraser

Dr Lorna Fraser: It was all a bit of an accident really. I had a research interest in childhood obesity but took a research position funded by Martin House Children’s Hospice in 2008 whilst I completed my PhD. I quickly realised that undertaking research that could influence policy and practice would help many more children and families than direct clinical practice. Through our work we have secured funding from Martin House Children’s Hospice for a research centre to undertake and disseminate high-quality research on children and young people with life-limiting conditions, their families and staff who care for and support this population (www.york.ac.uk/mhrc). 

You are very well known for your work on prevalence in paediatric palliative care, can you tell us more about this work? How has this made a difference in the UK and beyond?

LF: Our work on the prevalence of life-limiting conditions has been used widely by charities for advocating purposes and is also quoted in many policy documents including the recent NICE (National Institute For Health And Care Excellence) Guidance for end of life care for infants, children and young people. Our recent ‘ChiSP’ study in Scotland was one of the pieces of evidence that resulted in the Scottish Government pledging an increase in funding to Children’s Hospice Association Scotland of £30 million. 

I am also aware of the methodology that we used for these studies has been replicated in several other countries including Belgium, Kuwait and South Korea.  

Dr Lorna Fraser (right) receiving the 2018 EAPC Post-Doctoral Award from Dr Cinzia Brunelli yesterday in Bern, 25 May 2018.

Could you tell us something about your research interest in equal access to services for children and young people? 

LF: I get very frustrated when I speak to parents of children with life-limiting conditions and they talk about all the difficulties that they have in getting the correct care or equipment that they require for their child.

All children and families should have access to health care, including palliative care, where and when they need it. In the UK we have a large number of children’s hospices, funded in the charity sector, but no national strategy for the development or delivery of paediatric palliative care. Therefore we still have tertiary children’s hospitals without specialist paediatric palliative care teams and areas of the country without 24/7 community nursing cover. 

Can you summarise the most important lessons you have learned from children and adolescents approaching end of life? 

LF: This is a tricky question as most of my work to date has been with data and not the children and young people themselves. We had a group of young people at our recent research prioritisation day and I was very impressed with them speaking up and telling the professionals that what was important to them was very different to what was important to the professionals! The young people prioritised pre and post bereavement support with a real emphasis on providing spiritual and religious support.

What does winning the EAPC Post-Doctoral Award mean to you? 

LF: It is a great honour to have been chosen to receive this award. Paediatric palliative care research is not often highlighted as being important, so to have the work of myself and my team recognised by the EAPC is excellent.   

And finally, if you had not followed a career in medicine, what would you be?  

LF: I would definitely have been a vet.


Breaking news …
For the first time ever at an EAPC World Congress, there will be a Children’s Palliative Care Day held in parallel at the 16thEAPC World Congress in Berlin 23 to 25 May 2019.

This entry was posted in CHILDREN'S PALLIATIVE CARE, EAPC ACTIVITIES, EAPC Researcher Awards, EAPC World Research Congresses, INTERVIEWS & TRIBUTES and tagged , . Bookmark the permalink.

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