Hearing the voice of children and young people – strengthening children’s palliative care research.

There are just 17 days to go to #EAPC2022! The 12th World Research Congress Online of the European Association for Palliative Care (EAPC) has live sessions on 18 to 20 May 2022, and lots of on-demand content.  Today, we are pleased to welcome Professor Julia Downing to give us a sneak peek into her plenary lecture and to tell us more about children’s palliative care research and how it can make a real difference to those who need these services.  Julia is Chief Executive of the International Children’s Palliative Care Network (ICPCN).


Professor Julia Downing

I have often been asked whether I think it is ethical to do research in the field of children’s and young people’s palliative care. How would you respond to that? For me, the response is whether it is ethical not to do research (1). If we are to reduce suffering and improve quality of life, then we must continually seek the best way of doing this.

It has been encouraging to see how the evidence in the field of children and young people’s palliative care is growing, yet how do we make sure we continue to see developments in the field? How can we hear from children and their families about what matters to them? I don’t have all the answers, but for the #EAPC2022 lecture, I will discuss some of the goals, challenges and lessons learnt from my experience in a range of countries and in working with colleagues from around the world, learning from them, gaining their insights, and most importantly learning from the children and young people who we care for.

I had a teacher early in my career. SY was a 13-year-old Turkish girl with cancer who I cared for over thirty years ago. At that time children such as SY were not involved in shared decision making, she was just told what treatment she would be getting. She was receiving care in the UK, and was separated from her friends, brothers and sisters. SY knew she had cancer and whilst at first, we spoke through a translator, SY was quick to pick up English and soon we were able to have long conversations about life in Turkey, her family, her hopes and fears for the future. Her tumour was aggressive and when it was clear that no more treatment was going to help, she went back to Turkey, where she died at home surrounded by her family. I was keen to learn more how I could care for children such as SY – how could I make sure that they were more informed about their treatment and prognosis, and could they be more involved in decision making? I remember being struck by how little research there was, how little evidence there was for us to follow, and how keen SY was to tell us what was important to her. She taught me so much, and even now, I often think about what was important to her and her family.

The future of children’s palliative care research is exciting – multi-country, multi-disciplinary collaborative research studies are being developed and undertaken, with children and young people at the centre of the research. Recent experiencing of working with young adults with palliative care needs as co-researchers during the covid pandemic has been enriching, not only to the study, but to all of us as researchers, and it is an important development as we move forward in the field.  This was such a change from thirty years ago when I cared for SY. She had no say in what was happening to her and her voice was not heard. The culture change since then has been exciting to see, with children and young people, and their parents/carers being involved not only in shared decision making but also in designing and implementing research. However, this is not always the case. We need to continue to influence the culture, to ensure ethics committees and researchers understand the importance of involving children and young people in research, and make sure that this becomes standard practice. The generation and utilisation of evidence is an integral part of all that we do within children’s and young people’s palliative care so that we can improve access, reduce suffering, improve patient and family experience and increase quality of life.  

Join Professor Julia Downing at #EAPC2022. On Friday 20th May 2022, Julia will give the Paediatric Palliative Care Plenary ‘Children’s Palliative Care Research – Goals, Challenges, Lessons Learnt and the Future’ at the EAPC 12th World Research Congress Online. Find out more about the Congress here.

Reference

  1. Downing J. (2016) Editorial: ‘To research or not to research – An important question in paediatric palliative care’. Palliative Medicine 30(10) 902-903.

Links and resources

About the author

Professor Downing is an experienced palliative care nurse, educationalist and researcher. She is the Chief Executive of the International Children’s Palliative Care Network (ICPCN) and Professor at universities in Uganda, Serbia and the United Kingdom. She has worked within palliative care for over thirty years, with more than twenty of those working internationally in Uganda, Africa, Eastern Europe and globally. Professor Downing serves on the Boards of several non-governmental organisations and she is an Advisor to the International Association of Hospice and Palliative Care. She is also part of the steering group for the EAPC Children’s Palliative Care task force. Twitter: @julia_downing


WELCOME TO EAPC 12TH WORLD RESEARCH CONGRESS ONLINE –18 – 20 MAY 2022. REGISTER NOW!

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