Education of Health Care Workers While we continue to honor our original mission to support a team of palliative care nurses and nursing assistants to travel to rural villages in Uganda to provide palliative care and social support to those in need, we have more recently directed our efforts towards palliative care education for local practitioners, community health workers, and patients in effort to raise awareness of palliative care and improve access to alleviation of suffering, whether alongside treatment of the underlying illness or too often, when no treatment of the causative disease is possible.
This past year our organization (PCFU) has gone through what we can only describe as a gratifying explosion of work. As a result of all that we have learned over ten years about the overwhelming palliative care needs of people in rural Uganda, and through the partnerships we have nurtured over the years, we have been able to broaden our reach not only through Uganda, but also to other countries across the continent of Africa. Palliative Care for Uganda (PCFU) recognizes that continued education of local healthcare providers is paramount to its mission of providing palliative care to the people of Uganda. While initially this involved giving lectures and one-on-one demonstrations to local physicians and nurses on principles of palliative care, as time went on, we realized the need for farther reaching techniques to train healthcare workers to be able to provide self-sufficient and self-sustaining palliative care to the local population, both rural and urban.
In the past few years, PCFU has been developing a multi-media educational curriculum using video clips from actual palliative care encounters between our Ugandan team of experts and Ugandan patients in order to educate local healthcare workers in several principles of palliative care. Working closely with the documentary filmmaker Lucy Bruell, PCFU created several video-based modules that can be used in educational settings such as medical schools, nursing schools, and hospitals. Work is ongoing to include more topics to be covered by the curriculum. In order to disseminate this educational program, we have partnered with Pan African and Ugandan palliative care organizations such as The African Palliative Care Association and Hospice Africa Uganda that have the infrastructure to reach as many nurses and doctors on as broad a scale as possible. The first pilot study of the modules was carried out in 2018 and was a huge success. With further collaborations with academic medical centers within and outside of Uganda being strengthened, we hope to distribute this program to other countries in Africa in the coming years.
Webinars for Lower and Middle Income Countries on Palliative Care Topics A series of webinars on grief and bereavement has been developed by Randi and her palliative care social work colleagues on understanding and managing grief and bereavement. Collaborating with the African Palliative Care Association, each of these webinars have been attended by as many as 150 on-line participants from 16 countries, bringing new ideas and approaches to areas with limited resources where such information is not readily available. More sessions are planned for the coming year.
Educational Programs for Village Health Workers on Palliative Care Statistics show that close to 90% of palliative care needs are not met in many lower- and middle-income countries (LMICs) in Africa. PCFU conducted in-person educational programs at rural hospitals and with village health workers to raise awareness of what palliative care is, what it can do for their communities, and how it can be accessed. Presenting to over 200 people this past year, the Palliative Care Outreach Team has seen a 300% increase in referrals. Consequently, PCFU is now paying to educate and support additional nurses in specialty palliative care training to cover the increased needs in the villages.
Patient Education Videos Another initiative that is in development is patient education through videos distributed to local communities covering health topics that touch many people. Last year we visited a young man with advanced cancer who was suffering in pain. We treated his pain, but when we explored how much he and his father understood about his cancer and its treatment, they presented a booklet they received from the Uganda Cancer Institute at their first visit called, “Coping with Cancer, A Booklet for Cancer Patients.” When the boy was diagnosed, no explanation of his disease was given except handing the father the book. “But we can’t read '', he explained to us. Because of this visit, and many similar encounters by our team in the rural villages, this year PCFU engaged with US- and African-based filmmakers to begin developing a series of short videos in local languages explaining cancer, its treatment, the side effects of treatments and how these symptoms can be managed. We presented the first completed video to the heads of the Uganda Cancer Institute and the African Palliative Care Association. They loved it and we are now conducting a study with the Uganda Cancer Institute to study the impact these videos have on patients' experiences. The African Palliative Care Association has plans to distribute it to many countries, but this will require dubbing in several languages. More topics are planned for future videos.
With the support of its donors, PCFU is able to provide all of this free of charge in these LMIC settings.
Palliative Care for Patients
We originally started Palliative Care for Uganda, Inc (PCFU) to build self-sustainable programs to reduce suffering in people with chronic or life-limiting illnesses. The Palliative Care Outreach Team at Naggalama Hospital has become known throughout Uganda and has been recognized at international conferences and by global medicine organizations as a model for palliative care delivery in under-resourced rural areas. Doctors and nurses have come from many countries to spend time with the team to learn their methods for providing palliative care in remote areas. Donations, medications and medical supplies are obtained in the U.S. and through reliable medical suppliers in Africa and hand delivered to our center of operations in Uganda at the St. Frances Naggalama Hospital. These medications and supplies are used solely for the patients served by Palliative Care For Uganda. Developing and maintaining partnerships with other organizations advances the care of patients in this part of Uganda by keeping a steady supply of necessary medicines and equipment.