First generation migrants' experiences of terminal illness: a systematic review of diasporic dying

Abstract

Background Migration is an established global phenomenon. While many newly arrived migrants have better health than the general population of the country they have moved to, migrants also have their own healthcare needs and face particular issues when diagnosed with a terminal illness. First generation migrants are less likely to have social, financial, and medical supports when faced with a terminal illness. These factors make first generation migrants an important group to understand in order to inform service commissioning and delivery. Methods The systematic review was an international qualitative evidence synthesis of English language papers from 2000 to 2023. The primary research question underpinning this novel review was: What are the experiences of first-generation migrants who live with or who are supporting a relative with a terminal illness in the country to which they have moved? Databases (MEDLINE; CINAHL; PsycINFO; SocIndex; Web of Science) were searched in August 2023. Records of 1593 publications were screened, resulting in 39 included papers. CASP was used to inform quality appraisal. Results First generation migrants struggled with accessing suitable health services and treatments. Structural barriers, such as lack of support for translation/interpreting and for navigating care was visible alongside limited social support networks. Financial precarity ran as a thread through the data, with participants needing to work while unwell, and being unable to return to their country of origin for their own death or to bear witness to the deaths of relatives. First generation migrants experienced caregiving through the lens of difference; maintaining autonomy in the country they would die in, intersected with cultural practices and expectations such as not sharing the prognosis, and mis-matched ideas regarding quality of care provided. The identity of ‘migrant’ is heterogenous, poorly defined, and may have resulted in identifying studies conducted in the global north. Conclusions Diasporic dying is not a new phenomenon, yet services and policies fail to meet people’s needs. Services urgently need to identify and dismantle structures which uphold and perpetuate inequality, including this population who suffer multiple disadvantages and risks.