End-of-life care experiences, challenges and needs of people with a migration background: a qualitative citizen science study

Abstract Background Palliative care initiatives often fail to align with the norms, values, and preferences of people with a migration background and their relatives, leading to a mismatch and underutilization of available services. Multiple factors contribute to this challenge. While previous research highlights disparities in access to and quality of palliative care, little is known about the lived experiences with palliative care of people with a migration background in superdiverse urban settings. This study explores the experiences, challenges, and needs of people with a migration background in organizing formal and informal end-of-life care and support in a Dutch urban neighborhood. Methods A qualitative participatory approach was co-developed by two professional scientists and eight citizen scientists. They co-designed the research framework, including training for citizen scientists. A total of 43 interviews were conducted, of which 26 persons with a migration background facing incurable illness and/or age-related health conditions, and 17 informal caregivers. Data were analyzed using a critical hermeneutic creative method. Results Some citizen scientists who performed the interviews found that death and dying were difficult and emotionally charged topics to discuss. Yet, they also felt a strong sense of responsibility to support interviewees, to listen deeply, and to understand their perspectives. Interviewees’ perspectives on death were shaped by cultural, religious, and migration experiences and were often framed as a transition rather than an endpoint. Family played a central role in care, providing continuity, a sense of safety, and deep relational care. However, both care recipients and informal caregivers reported feelings of loneliness and guilt, particularly when struggling to organize high-quality (formal) care in contexts where access to culturally aligned formal care was limited. They expressed a need for relationship-based care, and opportunities were identified in community-focused collaboration. Conclusions This study shows that end-of-life care for people with a migration background is primarily experienced as a shared, relational, and morally grounded practice embedded in family and community networks with a need for collaboration with formal and informal initiatives in the community. These findings highlight the need for culturally sensitive, relational, and collaborative palliative care approaches that move beyond individualized and medicalized models.