Partnerships for the goals – A peace-centred approach to designing and implementing palliative care programmes in humanitarian settings
There is an increasing number of conflicts globally, and most of them are associated with the displacement of people, increasing pressure on fragile health systems, conflict-related deaths and health emergencies. Such crises continue to threaten the ability of many resource-limited settings to achieve Sustainable Development Goal 16 – the peace pillar. This pillar focuses on promoting peaceful and inclusive societies, providing access to justice for all and building effective, accountable and inclusive institutions at all levels. According to the recent Sustainable Development Goal report, none of the goals are likely to be met by 2030, and notably, the poorest countries are struggling the most. Conflict (alongside natural disasters and economic crises) is a significant contributor, undermining initiatives to foster peace and build robust institutions. As governance weakens and justice systems struggle, maintaining the rule of law becomes challenging in conflict zones. For those involved in sustaining and advancing palliative care in these contexts, there is scope to strengthen our partnerships in planning and operations so that the limited resources we have available are used optimally whenever possible to accelerate our progress towards achieving the Sustainable Development Goals.
This article is based on the work of the African Palliative Care Association and the University of Leeds in humanitarian settings in Uganda. Uganda hosts over 1.5 million refugees, which is the highest in Africa. The refugee population continues to increase due to perennial conflicts in the region, including in the Democratic Republic of Congo, Eretria, South Sudan, Sudan and Somalia. We report on our experiences of a programme work to develop and test a digital health platform for collecting patient-level data at the household level. The platform includes a mobile phone application used by health workers to capture patient-reported data, with data then shared to an online dashboard for review by palliative care providers. The initial development work took place across three refugee settlements in Uganda.
What did we do?
Key principles driving our programme included focusing on the experiences and needs of those involved in our work, building community trust, and aiming for incremental improvements in well-being and stability.
We began by ensuring health partners in the humanitarian settings were engaged and involved in developing the programme, providing opportunities to highlight potential data needs that could strengthen the collaboration. We sought to understand the historical, cultural, and political contexts of the conflict-affected regions to develop an approach that was more resilient to disruptions and better positioned to achieve sustainable impacts. We recognise that this sensitivity will require ongoing dialogue with communities to ensure that programs remain relevant and responsive to their needs. In the Bidi Bidi Refugee Settlement in Yumbe District, we began by mapping key stakeholders to engage, completed in partnership with the local District Health Office, which represents the Ministry of Health of Uganda in the area. The African Palliative Care Association then attended the partner update meetings to introduce the programme to this community and seek input on the possible implementation approach. We found that actively involving local communities in decision-making processes was vital for fostering trust and cooperation. Such involvement aimed to not only enhance the acceptability and relevance of the resulting intervention but also ensure our approach promoted social cohesion and shared goals.
Through engagement with the humanitarian health partners in the Yumbe District (i.e., the International Rescue Committee) and the District Health Office it was proposed that, alongside common palliative care symptoms and outcome data, we should collect symptom data suggestive of prevalent diseases in the community. This included tuberculosis, hepatitis B and COVID-19, enabling the health teams to leverage real-time data for timely detection of symptom clusters in palliative care patients. This timely identification informs early detection and response, which are pivotal to effective epidemic surveillance and management, as well as early treatment to optimise care outcomes. This was incorporated into the design of our mobile phone application, aligning its content with the preferences of intended users. We were fortunate to have such flexibility built into programme delivery. We recognised the importance of this and reflected that such flexibility would also enable us to adapt to circumstances influenced by shifting conflict dynamics, emerging health needs, or local resource availability, all of which may influence the effectiveness of planned programmes. Within the constraints of research projects, being able to pivot in response to evolving needs and risks may allow for timely interventions that address immediate challenges while still focusing on long-term goals.
Another key component of the programme was training. Related to programme delivery, we worked with humanitarian health partners to train four of their staff on how to use the mobile phone application. Each partner subsequently received a tablet, which was used to access the data shared via a password-protected dashboard. Throughout the programme, we also sought to increase awareness and the integration of palliative care within existing services for equitable access for host communities and the refugee community. This included providing educational resources to build palliative care capacity across four staff from the International Rescue Committee and ten community volunteers. We also provided resources to staff from Yumbe Regional Referral Hospital, which mainly serves the host community.
Within the delivery of the programme, we aligned practice with the social cohesion framework. This included opting for equal numbers of participants across both host community and refugee populations. This was intended to create social cohesion in communities by creating opportunities for sharing resources and using health projects to support sharing social resources. Adopting equitable recruitment opportunities sought to enhance the coexistence of refugees and host communities in settings including the Bidi Bidi Refugee Settlement and Yumbe District, mirroring the wider country where refugees share most of their resources with the host communities.
Next steps
As our work continues, we are keen to incorporate peacebuilding objectives into our monitoring and evaluation frameworks. This approach can facilitate continuous learning and adaptation. By developing metrics that assess both health outcomes and contributions to peace, such as improved intergroup relations and enhanced community resilience, we hope our programme can more effectively measure its impact on both health and stability. This dual focus will enable us to reflect on how our programme operates within a holistic framework, recognising that health interventions can play a significant role in peacebuilding.
Collectively, we have found that prioritising community trust and incremental improvements in well-being and stability have guided our programme. These components are essential for ensuring the sustainability and effectiveness of digital health platforms in refugee settlements. We have much to learn in terms of delivering programmes and research within conflict settings, but we hope our experiences can be of value to guide others seeking to undertake similar work in conflict-affected settings.
The first author lived in a conflict setting for more than 25 years and is an advocate for peace.
We thank UNHCR – Uganda office, the District Health Office – Yumbe District and International Rescue Committee for their partnership and collaboration on this initiative.
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