Globally about 21.6 million children could benefit from palliative care, or services for young patients and families facing life-threatening illnesses. The majority of them (98%) live in LMICs. However, nearly two-thirds of these countries lack paediatric palliative care (PPC) services, particularly in Africa. Strengthening PPC is a cornerstone of effective healthcare provision by reducing health expenditures due to hospital admissions, smaller out-of-pocket payments by households, and less suffering through more timely care. It can also support LMICs’ progress towards attaining Sstainable Development Goal (SDG) 3 (“good health and well-being for all”), SDG 10 (“reduce inequality”) through more equitable access to timely care and services, and SDG 5 (“gender equality”) by helping women and girls who have to divert their economic and educational pursuits to care for the sick and dying without support. Unfortunately, PPC is developing very slowly. Reasons include the need to consider not only the disease in question, but also the child’s developmental stage, cultural context, family values and locally available resources. There is also a lack of published evidence to support the development of PPC programs and create effective policies. Research capacity is low in low-income regions such as sub-Saharan Africa. Our project can help address this gap.
The aim of this mixed-methods project is to document steps taken by successful hospital-, community- and home-based PPC programs in southern Africa and test them in other LMICs. We will collect data from relevant documents, surveys, site visits and interviews with a wide range of stakeholders (program beneficiaries, service providers including biomedical and traditional practitioners, religious and community leaders, policy makers).
We will carry out this work with an interdisciplinary team of experts from South Africa, Malawi, Uganda and Tanzania. They will help develop a set of how-to guidelines to test in other parts of Africa. This work could potentially help millions of families in Africa and serve as a model for LMICs in other parts of the world. We will build research capacity to help pave the way for a new generation of African researchers and their affiliated institutions. This project will also help strengthen healthcare systems meet the needs of low-income households and communities.
Start Date: October 2022
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