A common recommendation to promote children’s palliative care is to train more clinicians. Whether we alter the curriculum of a medicine programme, create online courses for community health care workers, or write a textbook for nurses the goal is to impart knowledge about children’s palliative care.
Yet those strategies are aimed somewhat at students who have already expressed an interest in learning more about children’s palliative care. Another approach would be to introduce students to children’s palliative care early in their academic careers, at a time when most have never even heard of the concept.
That is what happened to Matthew Quillen in 2014.
Matthew is an undergraduate student studying Health Policy and Administration at The Pennsylvania State University in Pennsylvania, USA. Given that his father is a physician, it is not too surprising that Matthew is interested in medicine, but when he signed up to work on a research project with Dr. Caprice Knapp he was introduced to children’s palliative care. “Coming in I knew little to nothing about the concept of paediatric palliative care. It was a different, yet vital aspect of medicine that I was interested in adding to my previous study.”
First time in Uganda
For the past year Matthew, Dr. Knapp, and Prof. Julia Downing have been planning a study of paediatric pain in Uganda. Neither Dr. Knapp nor Matthew had previously been to Uganda (with Matthew never having travelled outside of the US). They relied on Prof. Downing’s extensive knowledge of the area to complete the study. The purpose of the study was to determine if three children’s palliative care programmes in Uganda were using the World Health Organization’s Two-Step Pain Ladder for children with persistent pain.
During the first week of August the study team spent time at Mildmay, Hospice Uganda, and Mulago Hospital reviewing medical charts, conducting interviews with health care workers, and identifying documentation used in pain assessment and management. “By reviewing charts and interviewing health care workers first hand, I was able to further understand how each site assessed, treated, and managed different kinds of pain. It was interesting to realise the similarities and differences between each location while recognising the alignment between interviewee’s responses and chart information,” said Matthew.
Although it will take time to analyse the data and draw conclusions, it was clear that the Two-Step Pain Ladder is being successfully used at these sites in Uganda.
Lessons learned from this project will be helpful to ICPCN as they work with international experts on issues related to pain. “The beauty of this project is that it showcases what researchers can accomplish by collaborating with ICPCN and involving students” said Dr. Knapp. “By involving students in research and introducing them to children’s palliative care we are building the next generation of advocates, clinicians, and researchers.”
An amazing experience
Matthew noted, “Traveling to Uganda was an amazing first-time abroad experience. This project not only offered me a differing perspective of the care delivered overseas, but provided me unique experiences that I will take with me on my journey in medicine. Finally, I would like to thank both Dr. Knapp and Prof. Downing for their continued support and the opportunity to join them on such a wonderful research experience.”
The study team would like to acknowledge funding received from the Africana Research Center at The Pennsylvania State University. This project was a joint effort between ICPCN and The Pennsylvania State University.