To continue to expand the evidence-base for palliative care by promoting the prevailing research culture and increasing research collaborations within and outside palliative care service provision

In the first half of 2023, we  piloted the use of the photovoice methodology, a community based participatory method. This was related to our Transform Project, in exploring the lived experiences of patients living with life limiting illnesses in humanitarian setting of Obongi and Adjumani districts, and done in partnership with Cairdeas IPCT and Peace Hospice Adjumani.  


Photovoice involved training 22 Village Health Team (VHT) Mentors in this research method, and we then worked with 8 of the VHT Mentors for the pilot. Researchers visited the VHTs four times for recorded critial dialogue and a thematic anaylsis was done. Themes found were discussed in a workshop with VHTs, health leaders, and the researchers.

The Transform research project in northern Uganda was made possible through our partners Cairdeas IPCT, Peace Hospice Adjumani, University of Edinburgh, the International Children’s Palliative care network, the Ministry of Health, and is funded through UKAID. Our research protocol was titled, “Exploring palliative care needs among refugee and host communities with chronic illness and VHT’s experiences of providing Palliative care in Obongi and Adjumani districts in Uganda.” 


Research activities included a situational analysis, systems review, needs assessment, and impact evaluation, which increased awareness and access to PC among patients with chronic disease and increased the capacity of health professionals, Village Health Teams (VHTs) and family caregivers.

In 2021, we investigated the prevalence of holistic care needs in patients with chronic and life-limiting illnesses in the Kiruddu Hospital Emergency department. The research project was done collaboratively with Yale University and led by Yale student Dao Ho and funded through Yale University, while the PcERC team assisted in data collection and analysis by surveying 100 patients with palliative care needs and conducted interviews with 11 healthcare workers.


The data was analysed by Dao Ho and presented in her Master’s Thesis of “Understanding Palliative Care Delivery in a Ugandan Emergency Department and United States Emergency Department.” Key observations include reports of inadequate PC training and challenges in delivering palliative care from the emergency department healthcare workers. In the surveyed patients, we noted a high presentation of need for palliative care.