Development of a Kenyan stakeholder-informed palliative care research agenda

Over 20 million people worldwide require palliative care each year, yet it is estimated that only 10 percent receive these services. This is a growing concern, especially in low- and middle-income countries (LMIC) which account for 80 percent of the patients requiring palliative care services to reduce unnecessary pain and suffering.

Developing countries are disproportionately burdened with chronic diseases such as cancer, HIV/AIDS, and cardiovascular disease - major causes of mortality – which place huge demands on already strained health care systems. Many patients in LMIC suffering from these conditions are diagnosed when the disease is far too advanced and curative treatment is no longer possible, leaving palliative care services a critical component to improve their quality of life.

Despite the demand for palliative care services, there is limited evidence to inform policymakers and health care providers in an African setting. Palliative care research has almost entirely been conducted in high-resource countries. To tackle this issue, the government of Kenya identified palliative care as a priority and set a national policy requiring provincial hospitals to provide palliative care services.

Kathleen Cartmell, Ph.D., an assistant professor in the College of Nursing, will conduct a pilot study to help develop a national palliative research agenda in Kenya. Cartmell, an advocate for palliative care, recently completed a study that implemented and evaluated an intervention utilizing community health care workers to deliver home-based palliative care in India. That research led collaborators in Africa to seek her participation in developing a framework in Kenya to determine a country-wide prioritized palliative care research agenda that is evidence-based and contextually appropriate.

This pilot study, a collaboration between MUSC, Kenya Hospices and Palliative Care Association (KHPCA), and MWAPO Health Development Group, is designed to enable the creation of a palliative care research agenda for Kenya, which will be directly informed by diverse input from palliative care senior administrators, care providers, caregivers, and patients.

The team will create an inventory of palliative care organizations and providers in Kenya, which will be used to select senior administrators to participate in interviews to obtain their perspectives on the needs, preferences, and research priorities for Kenya. This input will be used to develop research questions that inform a survey that will target a broad range of palliative care providers. Focus groups will be conducted with caregivers to gain their perspective on the barriers and facilitators encountered while caring for their loved ones.

Through this research, Cartmell and the project team hope to gain a better understanding of the gaps in palliative care clinical services, current resources available, and patient needs. This mixed-methods study was designed to ensure the vast majority of opinions –administrators, providers, caregivers, and patients - are represented. Data from this project will generate a stakeholder-driven research agenda that can help to expand Kenya’ momentum for building evidence-based palliative care models that will be specifically designed to fit the needs, priorities and available resources within Kenya.

“The need for palliative care is increasing, yet millions of people around the world cannot access this type of care,” said Cartmell. “I’m excited to work with partners in Kenya on a study that has the potential to address a major barrier to palliative care development in low resources settings and provide a model of collaborative stakeholder-informed research for other sub-Saharan countries.”