June 29, 2011 — Palliative care, focused on relieving and preventing suffering and other complications associated with dire illness, is an "urgent humanitarian responsibility," according to the World Health Organization.
In South Africa, the need for such care is great. It has the highest number of HIV/AIDS infections in the world and the disease and associated complications account for an estimated 42.5 percent of maternal deaths and for 35 percent of deaths in children under 5.
To help meet the need for palliative care in South Africa, University of Virginia nursing professors Marianne Baernholdt and Cathy Campbell and two students will spend three weeks there building partnerships, researching palliative care needs, developing care assessment tools and training health care providers and community workers in Mpumalanga and Limpopo provinces, rural areas where there is limited access to basic services like health care, clean water and transportation.
The project, "Palliative Care Partnerships in South Africa: Research and Education," is funded by a $20,000 Deepening Global Education grant from U.Va.'s Center for International Studies.
One goal is to involve South African partners at every level of the project to learn what ideas and programs they have in place, and not merely to implement a set of preconceived plans and procedures, Baernholdt said.
The team developed an expert panel to advise them and help develop a palliative care needs assessment tool that incorporates culturally appropriate instructional material. It includes the use of narratives about challenging situations for health care providers and community health workers. The panel also helped develop a tool for evaluation of palliative care processes and outcomes.
Campbell's research and clinical work are focused on hospice and palliative care decision-making and outcomes, with an emphasis on making end-of-life decisions -and educating nurses in rural communities about pain management.
Baernholdt's research centers on how to measure quality of care in global rural areas and the factors that impact quality of care.
The U.Va. team and its South Africa partners have been communicating via Skype every two weeks since January.
"Our South African partners are part of the planning and organization of the project," Baernholdt said. "They have identified participants and helped with logistics down to the very last detail." That collaboration has included where they will find the nearest place to buy drinks and snacks in such a rural area, whether they need to bring markers, pens and other materials for the education sessions, and helping identify meeting locations that are easily accessed by health care providers and community workers.
The hope is that by building partnerships and involving organizations in the community, the project will help local organizations, caregivers and community workers to continue palliative care assessments, learning sessions and evaluations of palliative care processes and outcomes after the research team departs. The team will meet with 70 to 80 health care providers and community workers.
"They are able to tell us what is important to them and what their needs are," Campbell said. "Often research available in journals is not current and working with community partners we can get current information. It makes for a better project.
"If we do what we do the right way, the community will champion the project."
They will also spend four days interacting with faculty and developing interdisciplinary partnerships related to palliative care at the University of Venda in Thohoyandou, Limpopo province, with which U.Va. has established an ongoing relationship.
A second goal is to identify Mpumalanga as a future site for U.Va. student outreach projects and clinical practicums for nursing students, Baernholdt said.
The two students who will travel to South Africa with Baernholdt and Campbell will assist with all aspects of the project and help analyze research data. They also each will work on an independent research project.
Caitlin Carr is a May graduate of U.Va.'s Frank Batten School of Leadership and Public Policy who is returning in the fall for the fifth-year master's program. She is the first recipient of the school's Stephanie Jean-Charles Fellowship, named for the Batten student who died in the 2009 Haiti earthquake. The fellowship will fund her independent research while she is in South Africa, including talking with administrators and creating an analysis for HIV/AIDS palliative care policy.
"We thought the interdisciplinary aspect of the project was very important," Baernholdt said.
Fourth-year nursing student Sarah Borchelt received two grants from the School of Nursing to fund her independent research: a Rodriguez Nursing Student Research and Leadership Fund award and Susan McDonald Nursing Student Research Award. She will assess palliative care needs and resources for children whose lives are affected by HIV/AIDS, either because they are sick or have lost friends and family. She will work with The Hospice and Palliative Care Association of South Africa and partner organizations.
"The AIDS rate is so high there and the parents are dying so young," Borchelt said.
Borchelt's goal is to assess existing palliative care services in the Nkomazi region of Mpumalanga to find out how many children are seeking and receiving palliative care; identify specialists who work specifically with children; assess training needs of health care workers who work with children; seek out facilities that are child-friendly; and identify hospice care. She will also talk with workers to ascertain their views on palliative care for children and ascertain whether there are national or provincial policies that address children.
Palliative care is taken in a broader context in South Africa than in the U.S., where it is focused on hospice and pain relief and has a medical framework, Campbell said. "In South Africa, health care workers may have to make sure that patients have food, which they need to take with the HIV/AIDS medications, or that the children have shelter or are going to school."