Developing best practices for engaging and involving palliative care patients in research in sub-Saharan Africa

Patient and public involvement and engagement (PPIE) are pivotal to maximising the impact of research on clinical care. Despite growing recognition of its importance, there remains limited evidence on best practices for implementing meaningful and contextually appropriate PPIE particularly in sub-Saharan Africa.

This study aimed to explore patients and caregivers perspectives on meaningful engagement and involvement in palliative care research in Africa and identify contextually appropriate recommendations for establishing, supporting and sustaining PPIE structures and networks.

This multi-national, qualitative cross-sectional study was conducted across four sub-Saharan African countries. We conducted qualitative studies across four African countries. In Ghana, Malawi, and Zimbabwe, in-depth interviews were conducted with older adults receiving primary or palliative care for chronic conditions. In Uganda, two focus group discussions (FGDs) were conducted with adult cancer patients. Topic guides explored: (1) the perceived added value of PPIE in research; (2) how patients and caregivers wished to engage in research; (3) potential roles within the research process; (4) preferred structures for PPIE activities; (5) capacity-building and training needs; and (6) support and resources required for effective participation. All interviews and FGDs were audio-recorded, transcribed verbatim, and analysed using framework analysis.

A total of 94 participants were recruited, comprising 57 patients and 37 caregivers (no caregivers were recruited in Uganda). Participants viewed PPIE as a platform for patient empowerment and meaningful engagement in research. Key areas in which participants wished to be involved included identifying research priorities, participating in ethical review processes, supporting patient identification and recruitment, contributing to data collection, engaging in research dissemination, and prioritising recommendations for patient care and health policy. Preferred PPIE formats included workshops and panel discussions, with quarterly meetings suggested. Training needs focused on capacity building, empowerment for PPIE roles, and preparing materials for dissemination.

This study provides evidence-based recommendations for developing and sustaining meaningful PPIE in palliative care research in sub-Saharan Africa. Our findings contribute to the formalisation of PPIE in African palliative care research. Further work is needed to implement, refine and evaluate these approaches across different settings.

Not applicable.