REPORT: Care relations under pressure

Executive summary

Adapting Humanitarian Response to Refugees’ Endeavours: Managing Food and Health Insecurity (ADAPT) is a peer-driven anthropological research project implemented by Danish Refugee Council (DRC) in partnership with the University of Copenhagen (UCPH) and funded by Novo Nordisk Foundation (NNF) 2025 – 2026. The project is carried out by DRC’s longitudinal research initiative, the Participatory Research Team on Community-Led Action (PARTOCA).

The project explores the coping practices and care of South Sudanese refugees living with chronic disabling conditions (loss of functioning that requires everyday care¹) in  refugee settlements and urban areas in Kenya and Uganda, and some who have returned from these areas to South Sudan. Simultaneously, the study follows community-based institutions and care providers, humanitarian actors, and formal health providers. ADAPT aims to contribute to advancing and improving care for refugees with chronic disabling conditions by investigating which community support structures persist and work to support people with these conditions, and by exploring how these community structures can be better supported, prioritised, and scaled up by humanitarian actors to adapt to current circumstances.

ADAPT works with peer researchers, refugees trained in ethnographic methods, who follow households affected by chronic disabling conditions in their own communities.

In this report, we present preliminary insights from the first year of the project, documenting refugee efforts to care for chronic disabling conditions as humanitarian aid rapidly shrinks. With the understanding that care is always a social relationship, we examine three general – and overlapping – kinds of care relationships and their interconnections: familial, sociable, and institutional care relations.

The study focuses on chronic disabling conditions that require daily care from others. The daily responsibilities for bodily, social, and emotional care are often taken on by relatives or, in some cases, by household members or neighbours who are available to assist regularly. Familial care relations are thus often kinship-like and imply close familiarity, intimacy, and proximity. Sociable care relations are based on the sociality of the community, and sociable care is provided by fellow community members who recognise a need and respond – often ad hoc. Finally, institutional care relations are professional, supported by some resources, and formal in that they are recognised by political authorities as relations whose primary purpose is to provide a service of care.

The cutbacks to resources for institutional care, particularly food assistance, and the shrinking of resources for healthcare, affect households with chronic disabling conditions disproportionately. In this situation, people are becoming more dependent on familial and sociable care relations. While familial relations are adjusting as best they can to current conditions, there are limits to the livelihood activities these vulnerable households can undertake. Sometimes, the best option is to relocate – to look for livelihood, support from relatives, or better medical care – despite the challenges increased mobility can present for these households with chronic disabling conditions. Although sociable relations of care are less regular than familial care, they continue to be important, and ad hoc interventions of support offered for households and individuals affected by chronic disabling conditions in a dire situation can compensate for their vulnerability and help them survive.

Through a deeper understanding of how care relations unfold and are practised in this extended hardship, perspectives for improving conditions for care are brought forward. This report lays the groundwork for the next paper, which will focus more on concrete recommendations and opportunities, based on the full study period.

¹ We define chronic disabling conditions in line with WHO’s International Classification of Functioning, Disability and Health (ICF).