Disadvantaged and disenfranchised in bereavement: A scoping review of social and structural inequity following expected death

An emphasis on individual intervention and psychological complexity has characterised research on bereavement following an experience of life-limiting illness. Exploration of “structural vulnerability” as a positionality produced by social and structural inequity could provide insights into areas of practice and policy in need of development. This scoping review sought to summarise published research on experiences of social and structural inequities in the context of bereavement due to life-limiting illness. Underpinned by recognised methodological frameworks, systematic searches were conducted of four electronic databases. Eligible studies attended to bereavement experience following the death of an adult due to life-limiting illness, included consideration of social and structural inequities, and were undertaken in high income countries between 1990 and 2018. Following thematic analysis, a conceptual framework was developed. Of 322 records, 62 full text articles were retrieved and 15 papers met inclusion criteria. Studies highlighted unequal social status in bereavement related to gender, class, sexuality, ethnicity and age, with structural inequity experienced in interactions with institutions and social networks. Studies also identified that the experience of bereavement itself may be accompanied by exposure to disenfranchising systems and processes. Structural vulnerability appeared to be associated with outcomes including psychological distress, social disenfranchisement and practical concerns such as financial strain, housing insecurity and employment issues. Social and structural inequities potentially contribute to layered and patterned experiences of disadvantage and disenfranchisement following expected death, with implications for individual agency. Findings point to the need for consideration of socio-ecological approaches within and beyond specialist palliative care, involving development of more responsive social policy, coordinated advocacy, and systemic capacity building regarding experiences of grief, to better support populations positioned as structurally vulnerable in bereavement.