“…I feel like I am just staying here waiting for death”: A qualitative study of the lived experiences of people with advanced illness in refugee settlements in Uganda
Le résumé fourni par la source
Refugees and migrants with advanced illness frequently face fragmented and inconsistent access to health services. Structural barriers delay symptom management, undermine continuity of care, and limit access to palliative support. A clearer understanding of their lived experiences is essential to inform equitable health system responses and inclusive models of care. This study explored the lived experiences of individuals with advanced illness in three refugee settlements in Uganda to identify contextually grounded strategies for improving access to and delivery of palliative care. In-depth semi-structured interviews were conducted with 44 purposively sampled refugees living with advanced illnesses, reflecting varied conditions, ages, and care experiences. A descriptive phenomenological approach combined with reflexive thematic analysis was used to identify key patterns and meanings related to illness experiences and care access. Participants’ pre-displacement contexts—often characterised by traumatic events—intensified current physical and psychological symptoms. A recurring theme was the loss of ability to care for their families due to declining health and limited functional capacity within the settlement. Unmet basic needs and restricted access to health services further hindered effective illness management. Displacement, trauma, and scarce resources collectively undermined health and wellbeing. Displaced individuals with advanced illness in Uganda face severe and interconnected challenges, including inconsistent access to healthcare, unmet psychosocial and spiritual needs, and limited support from non-governmental organisations (NGOs) and palliative care services. Culturally responsive, community-engaged strategies coordinated across humanitarian and national systems are urgently needed to address the multifaceted needs of this population in a coordinated and sustainable way.
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