CONNECT study 5

10-2024 to 09-2028

Background: There is growing recognition of the need to prioritize equity and social justice within serious illness, dying and bereavement, driven by empirical evidence showing significant social gradients in access to palliative care services and end-of-life outcomes. Anecdotal evidence and concerns raised by civil society organisations, healthcare services, and policymakers further emphasize the inadequacy in reaching those who clearly require support. Structural and social determinants influence how people die, grieve and access support. If social determinants are understood and addressed, there is substantial potential for improvement. 

Research gaps: Past research with a focus on equity and end of life has almost exclusively studied inequalities in access to care and formal support, resulting in important research gaps: 
1) For many relevant end-of-life experiences, such as social connection, no findings are available, 
2) The mechanisms for social gradients in dying, caring, and grieving continue to be poorly understood. Situations of life-threatening serious illness constitute a specific context in which social gradients might manifest themselves differently than in other health domains, e.g. power, knowledge, communication, cultural aspects may play a more substantial role. This warrants a specific focus on equity in serious illness. A specific focus on understanding social connection is thus warranted as it can offer a better and deeper understanding of the intermediate outcomes and underlying mechanisms of social inequalities in serious illness, dying and bereavement. Insight into social connection can offer new knowledge that will be helpful to interpret and complement most ongoing research on differences in access. Studying equity in relation to social connection and end of life can best be done through an intersectionality lens. This puts focus on the various structural drivers that produce vulnerabilities among affected populations. In previous studies, inequalities have been approached by looking at single characteristics (e.g. sex, age, or ethnicity) of individuals or groups that were assumed to be most responsible for inequalities. Intersectionality theory posits that human lives cannot be reduced to such single characteristics and that human experiences (including those at the end of life) cannot be accurately understood if we focus on discrete factors; a person’s social position is shaped by access to cultural, social and economic resources and power, which are influenced by social processes and structures. End-of-life outcomes and experiences are thus linked to interactions between various factors. 

Study aim: to understand patterns of inequity in social connection in contexts of serious illness, dying, and bereavement and provide an evidence base for how programs, practices, and policies can increase equity.

Research Foundation Flanders number: 001525N – 56955