The need for research in Children’s Palliative Care

Categories: Research.

Wernher von Baun once quipped, “Research is what I’m doing when I don’t know what I’m doing.” This quote illustrates a fundamental paradox in research; one must be an expert to conduct research, yet the point of conducting research is to discover what is unknown. This paradox is more relevant than ever in paediatric palliative care, and the time to face it is now.

Eight years ago I faced this paradox head on. I had a Doctor of Philosophy degree, funding, one staff member, and was asked to conduct research on our state’s paediatric palliative care programme. What could be easier? I began to look through the literature, and I noticed that paediatric palliative care was quite understudied. How lucky could I be? Yet, I quickly came to realise that there were several key reasons for this lack of research 1) it is expensive, 2) it is hard, and 3) there is a lack of trained researchers. Yes, I probably should have known this but I was an excited, young researcher and, admittedly a bit naïve.

Shortage of researchers
The shortage of trained researchers in paediatric palliative care must be addressed. Researchers are needed to conduct clinical, behavioural, and outcomes research. Training should be rigorous and accessible to people around the globe. And while many of us can point to established researchers in this area that we know, there must be a concerted effort to attract new, junior researchers and mentor them. Mentorship is time intensive, oftentimes uncompensated, but so important. In academic centres and large health care organisations, there are venues for mentors and mentees to come together. Yet, much of the paediatric palliative care community does not work in these settings. How can individuals in these settings become researchers or participate in research? What are we, the paediatric palliative care community, missing because of these lost opportunities? What role should organisations like the International Children’s Palliative Care Network (ICPCN) take in facilitating mentorship and development of researchers? These questions are critical and must be on our national and international agendas.

While one can envision a research training programme in paediatric palliative care, there still remains the hurdle that research is expensive. Unfortunately, that will not change. So, we must be smarter about the funds that are available. Collaborating with each other means that we do not have to be an expert in every type of research method, we do not need to have access to thousands of patients on our own, and we do not need to have all the answers. By pooling our ideas, skills, and resources we can create a research infrastructure and be more efficient in securing the necessary funding.

The ICPCN Delphi Study
The fact that paediatric palliative care is understudied, however, is encouraging. There is so much to learn, corroborate, and document. Many of us have been members of work groups, committees, and collaborations that come up with so many valuable areas where little to no evidence exists. In these cases the struggle is not to come up with ideas, but to prioritise. Prof Julia Downing, on behalf of the ICPCN, is currently tackling that issue. ICPCN is sponsoring a Delphi study to rank research priorities. But, Delphi is a famous site in Greece? Yes, but it is also the name of a research technique. Essentially, a large number of reviewers are sent a long list of topic areas and they choose the ones that are most important. The list gets shorter and shorter each time it is sent to the reviewers, until it is narrowed down to a reasonable number. ICPCN will then disseminate the list of priorities to its membership which will help to guide researchers, policy makers, and funding agencies in their decisions. Look for Prof Downing’s results in April of 2013.

Remembering why research is needed
Finally, we cannot forget that research takes place in our field because there are children with life-limiting illnesses. These children, their families, and their caregivers deserve our utmost respect. We must always ensure that we conduct research with respect for persons, justice, and beneficence. Ultimately, we should involve children and their families not just in the collection of data, but in the design of research, interpretation of results, and dissemination of results.