Grantee details

Traveling Scholars Program Report

Deborah Ajulu, MS

Travel date: October 7, 2020

Name of Meeting/Event/Activity: 11th EAPC Research Congress - Online

Origin: Kampala, Uganda / Destination: Vilvoorde, Belgium

How was this meeting/activity helpful to you?

The online attendance of the 11th EAPC Research Congress was a very important experience to me that enabled me to virtually meet and listen to some of the top brains in the world of research from Europe, North America and Australia in topics related to Palliative Care. What was fascinating to learn was that there were over 1,000 presentations submitted for the event covering a variety of areas of research on top of which were numerous posters all connected to Palliative Care (PC) signifying the great weight the topic was given. On listening to the various abstracts of the presentations and posters, the main thing that stood out and was explicitly brought out is the recognition that PC is a service that is very critical in the fulfilment of the objective to provide QoL and QoEL for patients towards which all the general health services strive. This point becomes more highlighted in particular, by the rapid changes in life experiences like the onset of COVID-19 that require versatility and agility of response which research contributes. What has been clearly demonstrated at this EAPC 11th Congress, is the increasing level of both scope and quality of research in the area of PC that is producing quality evidence to validate a strong case that a great need exists for PC. This is seriously needed to inform policy makers and in particular the donor community, scale up their ranking for PC. In the early part of the first half of 2020, at a Webinar event organized by NHPCO, PC was one of the areas highlighted to be attracting the lowest level of international funding. Could the reason have been because PC was not considered to be a great need? A great volume of the research from this 11th Congress is resounding a very loud “PC is a critical need!” I would like to quote one of the presentations which highlighted how important PC is and draws a strong conclusion. She says Palliative Care is a dynamic process which is to be a continuum in the patient’s whole journey. Then she concludes “Palliative Care at home doesn’t just happen – the more it is needed the more it needs to be planned and resourced.” (Dr. Rawlinson, Fiona et. al ‘Preparing for the next pandemic - a need to work with and resource a changed community.’ LBA-COV-014. This is a big issue for me as my background is economics and therefore my major concern is the adequate resourcing of PC.

How will you new knowledge & acquired skills help in furthering your work in hospice and palliative care in your program/city/ or country?

First a brief personal story: You may not have been aware that I am not a medical or health professional. My doctorate title is a PhD in Development Economics, rather an Medical Doctor. Although I was in academics taught at Makerere University Department of Economics. But due to the widespread rural poverty I decided to quit academia and became a practitioner in 2005 for which I registered an NGO for integrated project activities to address rural poverty with communities. I have therefore been involved in PC through that work due the compassion that overtook me after seeing rural families watching their relatives dying helplessly and hopelessly in excruciating pain with other medical conditions not attended to and in squalid conditions. Back to the question: Having said that I am not a health professional doesn’t mean I learned nothing. However, I do acknowledge that PC does fall squarely in the Health professional domain. As such I admit that much of the material and language in the presentations was health-professional specific. But there was clear acknowledgement by most of the presenters, that PC is an area that commands multidisciplinary collaborative engagements and interactions. In addition research itself is an activity that cuts across all academic disciplines. Research is what enables evidence-based work for best practices. A comment from one of the presenters was “Good intentions for anything needful like PC are not enough, there’s need for evidence.” Research improves services and treatments in general, it leads to development of new and better ways of diagnosis and treatments and it helps in the development of new technologies and processes that give breakthroughs in many areas. One such new technology which was presented was by Steigleder, Tobias at the Poster Discussion – Session One with the title: “Insights into the Dying Phase provided by Radar-based Biometric Assessment.” [Poster PO2 – 333]. This means there was quite a good amount of new knowledge and a number of skills I learned all of which will not be easy to unpack in this brief report. I would like first to make some observational comments. To start with, the fact that the event was Euro-centric, the research work done was heavily focused on the situations of the resource rich developed world of Europe, North America, Australia, Japan etc. but very little elsewhere. In these countries Universities and Tertiary Institutions and teaching Hospitals are a common occurrence for their most highly developed and sophisticated educational systems where research is a normal part of the curriculum, hence research is easily financed and expertly handled. In addition, PC service delivery is institutionalized such that the research done is connected to Hospitals, Hospices, Nursing and Care Homes environment. I make these comments because they are relevant to what I will share. The reality of my involvement in PC lands me in a resource poor less developed country of Uganda. The aggravating factors include marginalization and isolation of rural settings which are not the ideal conditions for effective research. What I gained most was knowledge of the new models and methods of research and new ways of doing things better in providing PC services. This experience highlights clearly the need for a research component to become strengthened in our PC work. Yet so far in the rural context of my situation, which is true for most of the private PC service providers in the rural Uganda, is that much of the work done is not supported by research and the work is weak on evidence-base which gives great concern. The main causes include scarcity of resources; lack of institutional space and equipment due to poor environment. What I intend to do is to share this information with the leadership, management and the team with whom I work. And also with the Education coordinator at PCAU (Palliative Care Uganda) the umbrella organization in the provision of PC services in the country. The main aim will be to lobby for mobilization of a coordinated collaborative effort by all PC providers in the country in the area of research nationwide. This will be particularly in both financial and human resources. Then to urge PCAU, as the umbrella, to lobby the Health Ministry for more government resources; as well as the Academic Institutions for Research. The knowledge and skills learned as you say when properly applied in situations of need can cause desirable change to take place. But challenges have to be overcome in some situations for that to happen.

How IAHPC Traveling Scholars Program be improved in order to help other future traveling scholars?

I am glad you included this point for this report. I would like to make a few suggestions that could be implemented right from this 11th EAPC Research Congress. They include: A good understanding of the Socio-Economic and academic backgrounds of the Scholars you support, To be more practical, there may be a need to include a follow-up plan of resourcing scholars from resource scarce situations of poor nations to apply their newly learned knowledge and skills in their situations to ensure a desirable outcome of a positive change, Make plans to provide the resources presented from such conferences to the situations of the scholars (rather than to the scholar per se) to make them available for future reference. This will build up a library of resources and make them available to and benefit knowledge-depressed situations for lack of strong research bases. This would facilitate the knowledge sharing and transfer from the centers in the developed countries where such knowledge is generated. There were Tools for PC promised by some of the presenters, this comes a s a special request please could your agency access those Tools and rechanneled them to the situations from where your scholars come. For fundraising purposes, could IAHPC offer to act as a reference?

Narrative summary highlighting the needs and challanges you face

Needs and Challenges: Inadequate Resources (financial and human); Weakness on research and evidence-base; Rural Isolation and Marginalization; General population poverty. Ways to address Challenges: Fundraising; Lobbying and Advocacy; Seek collaborative efforts that involve pooling resources and knowledge sharing.