INTRODUCTION

According to the Kenya Palliative Care Policy 2021-2030, less than 5% of children living with palliative care needs access the service. In this regard, KEHPCA, funded by Foundation S, engaged Busara Center for Behavioral Economics to develop materials that will create a new public conversation addressing the barriers and myths surrounding Children’s palliative care for CLWPCNs, thus increasing the demand for children’s palliative care (CPC).

PROJECT OVERVIEW

Under KEHPCA’s pillar 2; Information, Education and Awareness, this project known as WAna WAtunzwe (WAWA), seeks to increase demand for palliative care and early diagnosis through behavior change programming. Busara Consultants were to;

 1. Identify community understanding of palliative care for children

2. Document communities’ misconceptions about palliative care for children

 3. Develop two communication materials that address some of the community’s concerns around accessing CPC.

 4.Provide recommendations for addressing gaps identified with the aim to increase demand for children’s palliative care.

The consultancy work begun on 13 Mar 2024 and is set to be complete by the end of July 2024.

CURRENT STATUS

The progress made so far has included;1: Desk reviews on pediatric palliative care in Kenya: These were done and the research gaps explored through key informant interviews that were conducted with stakeholders in Nairobi. 2: Co-Design Workshop:  A digital co-design workshop was held with KEHPCA and experts in the palliative care field with an aim of gaining insights around relevant interventions.3: Identification of Concepts Addressing Specific Barriers and Levers: Key concepts that could be turned into interventions to address barriers were identified.

To date, behavior change communication prototypes have been developed and are undergoing testing and improvement before the final materials are approved.

KEY FINDINGS AND INSIGHTS

For caregivers whose children received palliative care, they termed it beneficial. However, it was established that there are negative perceptions towards CPC as well as widespread stigma. The community feels that palliative care is for children with poor prognosis in preparation for death. Some also view it as a failure by one’s family to take care of their own as traditionally done.  Moreover, other barriers hindering the access to CPC were found to be perceived cost, cultural beliefs & misconceptions, as well as systemic challenges e.g. poor referral networks.

CONCLUSION AND NEXT STEPS

According to the research and the key informant interviews conducted so far, there are several misconceptions around paediatric palliative care amongst Kenyans hence hindering uptake of services. In the next phase, Busara consultancy will develop 2 behavior change communication interventions to address the barriers identified. There is need to join efforts and scale up access to children’s palliative care in Kenya through efforts of various stakeholders like policy makers, civil society and the community.