The Impact of the Covid-19 Pandemic on the Mental Health of Palliative Care Providers in Uganda

Final Report:

For the past year I have had the privilege of working on a research project with the Palliative Care Association of Uganda (PCAU) exploring the effects of the COVID-19 pandemic on the mental health and psychosocial wellbeing of Ugandan palliative care providers. During my first two years as an international development studies minor, I became interested in how mental health fits into the global health field. Most of the global health initiatives we would learn about tended to focus on preventable disease, access to primary care, and/or inefficiencies in policy. When it came to mental health, however, it became increasingly clear that there is a growing yet critical gap in care. As I began to think about my capstone project, I hoped to integrate my Neuroscience major and IDS minor and work on a project related to mental health in a global context. In the Spring of 2021, I was extremely fortunate to be connected with Professor Lacey Ahern, an adjunct professor at the Eck Institute for Global Health. In addition to her role at Eck, Professor Ahern is also the Program Director for Global Partners in Care (GPIC), an organization housed at the Center for Hospice Care/Hospice Foundation (CHC/HF) in Mishawaka that works to enhance palliative care access across the globe. Through one of GPIC’s initiatives, CHC/HF was partnered with PCAU in 2008. PCAU is a membership-based organization that focuses on palliative care capacity building, advocacy, research, and resource mobilization. Since the partnership began, PCAU and CHC/HF have worked collaboratively to share resources, conduct research, and bring PCAU’s vision of access to palliative care for all who need it in Uganda to life.

Under Professor Ahern’s supervision, I was introduced to PCAU and learned of their growing concern for their palliative care providers' mental health during the COVID-19 pandemic. PCAU was interested in better understanding the question of “Who cares for the carer?”, especially during times of crisis and uncertainty. Together with Mark Mwesiga, PCAU’s country director, and Lisa Irumba, PCAU’s Advocacy and Research Officer, Professor Ahern and I began to build a research project centered around PCAU’s interests. It quickly became clear that it would be most useful to PCAU for us to collect both narrative data on the impact of the pandemic and data on the prevalence of common mental health disorders such as depression and generalized anxiety disorder. In light of this, PCAU invited Dr. Simon Kizito, a clinical psychologist from Makerere University, to our research team as the mental health subject matter expert. The project then grew from my initial plan to interview a few palliative care providers into a country-wide study on the prevalence of mental health disorders among palliative care providers and the psychosocial impact of the COVID-19 pandemic. Thanks to the support of Notre Dame’s Kellogg Institute for International Studies, we were able to fund the project and collect data from 123 providers via an online survey and 12 in-person interviews. Currently, we are wrapping up data analysis with the help of Notre Dame statistics professor Dr. Roya Ghiaseddin and are preparing a manuscript for publication. We also plan to present our findings at the African Palliative Care Association's annual conference this August in Kampala, Uganda. Ultimately, we hope this project will help palliative care organizations better understand the mental health needs of their providers and offer necessary interventions and resources to support their mental health and psychosocial wellbeing.

I am extremely grateful for the relationships I have made and the lessons I learned throughout this experience. Not only have I become a better researcher, but I have learned valuable lessons relating to the true meaning of partnership and cross-cultural collaboration. My project would not have been possible if it were not for the foundation of trust and partnership that exists between PCAU and the CHC/HF. I feel fortunate to have been able to observe how these two organizations work together towards a common goal and support each other through challenges such as the COVID-19 pandemic that make international work even more difficult. Additionally, my project showed me that international research that is truly collaborative takes time and requires adaptation and flexibility. In order for us to gather results and insights that were useful to PCAU, we had to be very intentional with our project design and implementation. It took nearly eight months from my first Zoom call with Professor Ahern, Mark, and Lisa to the date we launched our survey. This was not due to a lack of commitment or effort, but a desire to engage the appropriate experts, read the relevant literature, ensure cultural relevance in the questions we asked, and most importantly design study tools that best fit PCAU’s goals and interest for the project. I also gained an incredible mentor in Professor Ahern who helped ensure that our work was guided by PCAU and modeled what true collaboration looks like in every phase of the project. In international development courses, we often discuss how sustainable development projects must be guided by experts on the ground and cannot be driven by one person’s, or one company’s, or one country’s interests. Through my capstone experience, I was able to be a part of a team and build a project that echoed this core lesson of my IDS minor.