Chair: Jed Jerwood
a. Disenfranchised and disadvantaged: Public health implications of a scoping review of social and structural inequity in bereavement following expected death
Background: An emphasis on individual intervention and psychological complexity has characterised research on bereavement in palliative care contexts. Exploration of social and structural inequities that may contribute to a position of “structural vulnerability” in bereavement has been limited.
Aims/Purpose: This scoping review sought to summarise published research on the impact of social and structural inequities, following expected death.
Design/Approach: Underpinned by frameworks articulated by Arksey and O’Malley (2005) and Levac et al (2010), systematic searches were conducted of four electronic databases. Additional studies were retrieved through hand searching. Eligible studies attended to bereavement experience following the death of an adult due to a life-limiting illness, included consideration of social and structural inequities, and were undertaken in developed countries between 1990 and 2018. A priori and emergent themes were identified through thematic analysis.
Findings: Of 322 records, 62 full text articles were retrieved and 15 papers met inclusion criteria. Studies highlighted unequal social status in bereavement related to sexuality, class, gender, age and ethnicity, 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 isolation and practical issues such as housing insecurity, financial strain, and employment concerns.
Conclusion and application to PHPC: Social and structural inequities potentially contribute to layers of disadvantage following expected death and require further exploration. Findings specifically point to the need for systemic capacity building and responsive social policy regarding death, dying and loss – beyond the domains of formal health care and specialist palliative care – to better support vulnerable, diverse and potentially hidden populations in bereavement.
b. Navigating power dynamics in engaging communities in end-of-life issues: Analysis of the process of developing a community-based intergenerational arts initiative about death and loss as part of the Swedish DoBra Research Program
Navigating power dynamics in engaging communities in end-of-life issues – analysis of the process of developing a community-based intergenerational arts initiative about death and loss as part of the Swedish DöBra Research Program
Lack of community engagement in end-of-life (EoL) issues and age-segregation in Swedish society motivated us to develop Studio DöBra, a community-based intergenerational arts initiative to support community engagement in EoL issues and develop intergenerational meeting places. A library, an activity center for elderly, an artistic organization for children, and a school were collaborating organizations, with their representatives forming a project group with MK, a doctoral student, to develop Studio DöBra. This consisted of 5 workshops with 8 children and 8 elderly participating together in arts-based activities (e.g. collage, sculpture, games) with themes related to death and loss.
Through reflecting on challenges encountered in developing Studio DöBra, this presentation aims to contribute to a discussion about power dynamics in developing community-based initiatives to support engagement in EoL issues.
Community-based participatory research principles guided Studio DöBra development. Data was generated through documentation of the development process (notes and audio-recordings of planning meetings) and follow-up interviews with project group members. Analysis was an inductive qualitative process.
We found challenges of engaging communities in EoL issues related to two power dynamics: (1) Power dynamics in the project group: these included MK being perceived as having most ownership since he initiated the collaboration. However, community-organizations increased engagement and ownership through investing resources according to professional mandates. (2) Age-related power dynamics: project group members – the ‘adults-in-between’ participating children and elderly in age – had power over these two age-groups which could either enable, or avoid, block, or silence engagement with EoL issues. The manner and extent to which project group members reflected on personal EoL experiences created communicative spaces leading to action and change.
Conclusions and application to PHPC
This presentation illustrates the importance of reflecting on and ways for working with power dynamics in developing community-based initiatives supporting engagement with EoL issues.
c. Do you need a wife to die at home? A systematic review and gendered analysis of research addressing access to preferred location of end-of-life care
Dr Grace Walpole
The role of women as family caregivers at end-of-life is well established. What happens, however, when these women come to require care themselves? We know little of whether women can access family caregiving in the home, a model that has historically been reliant on the physical and emotional labour of women. In this presentation, we will report the findings of our systematic review and gender-based analysis of the literature around access to preferred location of care at end-of-life. Taking a feminist social constructionist perspective, we will explore three themes: (1) women’s preferred location of care at end-of-life and access, (2) who provides family caregiving for those women who do die at home, and (3) the barriers and enablers to women accessing family caregiving at home at end-of-life. The implications of these findings for palliative health service delivery and associated policy will be discussed.
d. Who cares for the dying poor? Developing compassionate inner city communities
Who Cares for the Dying Poor? Developing Compassionate Inner City Communities
Background and aims: Proponents of Compassionate Communities urge the palliative care community to recognize that 95% of dying is non-medical. They advocate a return back to the social aspects of palliative care that are developed, offered, and advanced by members of the public and civil society organizations such schools and churches. What is the way forward for poor and homeless people who are not seen as part of the public and excluded from civil society, whose biological family is estranged, whose caregivers are burdened by inequities, and whose homes are deemed inappropriate for care?
Design/approach: In a 3-year ethnographic study longitudinally following 25 homeless and vulnerably housed people at end-of-life and their service providers we learned that participants faced immense individual, organizational, and structural barriers to specialized palliative care. Service providers in inner city housing/shelter, health, and social service organizations did what they could to meet unmet physical, psychological, and social needs, but oftentimes, palliative care was too little, too late. In this presentation, we draw on interviews and ethnographic observations with inner city service providers and administrators to understand the contexts in which care for the dying happens.
Results/findings: Findings have implications for development of compassionate inner city communities: 1) Workers are filling gaps in the palliative care system, but not being recognized for it; 2) Workers are largely left on their own to address deep grief brought about by unjust and early deaths; and 3) Gaps exist in education, training, and support for palliative and bereavement needs in the inner city community.
Conclusions and application to PHPC: In the movement to bring palliative care back into the community, there is an opportunity to draw attention to injustice and build broader compassion for people living in poverty and homeless. This includes addressing exclusion and marginalization of poor and homeless people, their chosen family, and service providers.