IAHPC Scholars shared these reports after attending the online European Association for Palliative Care Conference in May. IAHPC Scholarships to other conferences are now available: see the News section for details.
Robai Gakunga, population health research scientist
Meetings like the EAPC Research Congress are important avenues to keep up to date with research, which is dynamic, and to build networks.
We need to engage with stakeholders (patients, their relatives, medical caregivers, policy makers, etc.) at the start of projects in order to understand the issues that are important to them. Resources, which are scarce, should be directed to research where findings will be useful.
I have felt awkward sometimes when collecting data from people who are ill, as this is a time when patients need time alone or with those close to them without being burdened with questionnaires and bedside interviews. Dr. Lucas Morin (France) and Dr. Tobias Steigleder (Germany) offered some solutions:
Dr. Steigleder emphasized that—even with these kinds of technological advancements—research must not interfere with the need for the social interaction and personal care that are core to palliative care.
Big data (routinely collected clinical practice data, administrative registry data, and health care claims data) can be used to overcome the difficulty of recruiting and retaining participants in palliative care research. However, it comes with quality issues and absence of information that really matters to patients, such as their experiences and quality of life measurements. Also, big data does not come in the usual structured formats and tables. It needs to be carefully reorganized (data wrangling) before analysis.
Dr. Morin summarized that the use of big data for research “will make a difference if we can leverage high quality information to ask questions that matter in order to provide answers that are useful.”
Antonia Kamate Tukundane, site programs manager, Mobile Hospice Mbarara
The three days away from my routine duties to be able to focus on the online plenary and abstract presentation sessions has been a priceless experience: I have been exposed to so many developments in palliative care that I did not know about.
Dr. David Currow’s opening presentation “What Can We Learn from Conducting Controlled Clinical Trials in Palliative Care?” challenged me to think about whether we are paying due attention to issues of standards in our palliative care practice. He spoke about the critical need for palliative care practitioners and administrators to continuously seek new knowledge and not stick to what we have always known.
These are our main challenges as we work to implement palliative care in Uganda:
The main thing to do to overcome these barriers is to disseminate knowledge. The second thing is to act on this knowledge by using it to advocate for what is right for the patient and family. I want to share the relevant presentations with coworkers, hoping to stir up the conversation about standards and help us begin to change the way we work.
The main regional referral hospital a few kilometers away depends on us to provide palliative care, but our small team cannot handle the need. My plan is to make a presentation to pediatric oncology nurses and doctors on pain assessment and management, to help open the team up to consider building their own capacity to assess and manage pain.
Mobashshar Hassan, MD, palliative medicine specialist, Senkatana Oncology Clinic
Providing palliative care to cancer patients and their relatives is my daily job at the cancer clinic in Lesotho. At the conference, sessions featuring champions of palliative care shared recent learning that I will be able to integrate in my practice.
It was informative and helpful: it enlarged the scope of how I think about palliative care for patients facing life-threatening illnesses and their relatives.
Dorothy Adong Olet, MD, academic program coordinator, Hospice Africa Uganda
This congress exposed me to the state-of-art research in palliative care. I gained knowledge about how clinical trials have been successfully conducted in various European countries, and learned better how research is important to improve evidence for clinical palliative care. There are no standards for palliative care; research can guide clinicians to change their practice over time.
The congress highlighted palliative care during the humanitarian crisis in Ukraine. It called for more individualized and personalized care.
I learned about the role of innovative technology, which can monitor vitals that can lead to congregate data. The technology-driven data gathered can be made available, accessible, and usable with technology that incorporates a specific biomarker, such as how breathing changes when opioids are used.
Knowledge that I have gained at the congress has inspired me to:
Koffi Amoumou Tengué, director-general, ORJEDEC (Organisation Jeunesse pour le Développmenent Communitaire)
The congress showed me the extent to which patients are suffering in humanitarian crises, and how difficult the provision of palliative care can be for caregivers and researchers. I also learned about the usage of opioids in treating cancer. I was glad to be given the opportunity to meet other providers of palliative care services in different countries.
Christine February, acting department head, Undergraduate Nursing Science, Western Cape College of Nursing
Cape Town, South Africa
This meeting was very beneficial for my research networking. COVID-19 has made social networking possible on a large and more efficient scale; the conference has made me fell less of a lonely, isolated researcher. I have also been empowered to present at such an important conference in the future.
Palliative care is my specialty, and learning new, updated information on an international level was very important: it both challenged and sharpened my palliative care skills. I will definitely implement the information in my classes at the undergraduate teaching program at the nursing college. In addition, I am working nationally to implement palliative care guidelines for all categories of staff, as well as serving on the research board.