Understanding Models of Palliative Care Delivery in Sub-Saharan Africa: Learning From Programs in Kenya and Malawi

Abstract

The need for palliative care has never been greater. From being significantly present in only five African countries in 2004, palliative care is now delivered in nearly 50% of African countries; however, less than 5% of people in need receive it. To scale-up palliative care, we need greater knowledge about how different models of palliative care work within different health systems. A case study evaluation was undertaken in Kenya and Malawi to define the models used, contextualize them, and identify challenges, best practices, and transferable lessons for scale-up. Visits were made to seven sites and, using an audit tool, data were collected from program staff, hospital staff, and local stakeholders, and care observed as appropriate. Three models of palliative care service delivery were identified, which supports the existing literature, that is, specialist, district hospital level, and community level. However, in looking further, findings show that the major determinants for each model were a set of philosophical questions and assumptions underpinning each and influencing staff and patient decision-making, planning, and allocation of resources. The health system structure and the beliefs about palliative care determined, and were determined most by, referrals, the patient journey, the centeredness of the model, and role definition and training. The models are also closely associated with the physical setting of services. Understanding how the services have developed because of, and indeed despite the geographical setting and the system level, provides us with a different set of indicators of program structure incorporated into the three models. The analysis of models provides pointers to future planning for palliative care.

The state of mHealth development and use by palliative care services in sub-Saharan Africa: a systematic review of the literature

“…This is an opportune time to consider the potential for mHealth to support palliative care services in SSA; a time of developing greater understanding about how different models of palliative care work within different health systems 1. While mHealth development is at an early stage, exploration of ways to enhance current service provision can take place, supported by documentation on the framework.…”

“…The initial framework was developed for reproductive, maternal, newborn and child health and was adapted for palliative care. Content of the WHO mHealth and ICT framework was modified to include a care pathway tailored for palliative care provision in SSA 1. A draft version of the adapted framework was shared with seven palliative care organisations from Rwanda, Kenya and Uganda for comment.…”

“…Palliative care is emerging across sub-Saharan Africa (SSA) and is now present in 24 of the 51 countries in the region, up from only five in 2004, but <5% of people with palliative care needs have access to supportive care 1. In 2013, there were an estimated 24.7 million people living with HIV in SSA,2 with 1.1 million deaths due to AIDS 3.…”

“…Additionally, in 2012 there were 847 000 new cancer cases (6% of the world total) and 591 000 deaths (7.2% of the world total) across the continent 4. The demand for palliative care is high and rapid development of palliative care services is urgently needed 1. Particular attention needs to be given to how palliative care can be provided to patients with cancer in the region.…”

“…Differing methods of service delivery exist, such as roadside care delivered by Hospice Africa Uganda,9 alongside palliative care services delivered at the specialist, district hospital level and community level. Recent efforts have focused on mapping such models of palliative care delivery and questioning how to develop and extend their reach 1. An emphasis on initiatives around education and training continue, with these seen as essential components of the WHO public health model for palliative care 10…”