Conference Agenda

Background

People belonging to sexual and gender minorities (LGBTQ+) have been and still are structurally marginalized, with a global increase of negative LGBTQ+ sentiments. Research finds that structural marginalization may affect LGBTQ+ people’s experiences and concerns regarding dying, death, loss, and care at the end-of-life (EoL). However, the body of knowledge about this is scarce as research is often biased towards heteronormative relationships.

Objectives

To explore ways in which LGBTQ+ people in Sweden deal with issues related to dying, death, loss, and EoL-care.

Design

Qualitative interview study.

Methods

Participants were recruited through DöBra Rainbow Cafés, i.e. meeting places for and by LGBTQ+ people to engage with EoL-issues held in partnership with local LGBTQ+ organizations. To date, 26 interviews have been held (age 25-87). Kastenbaum’s death system is used as a basis for analysis. The death system concept describes society’s ways of dealing with dying, death, loss, and EoL-care as “functions” over time (from preventing death to consolidation after death) and “components” for each function (i.e. people, times, places, and symbols/objects).

Results

Participants described encountering friction and conflict with society’s heteronormative ways of dealing with dying, death, loss, and EoL-care. For example, friction and conflict between heteronormative healthcare services and the wishes of LGBTQ+ patients, between biological families and LGBTQ+ communities, and between religion and LGBTQ+ lifestyles. Ways in which participants dealt with such friction and conflict was conceptualized as “queering the death system”. For example, participants described creating queer caring networks and holding LGBTQ+ memorials. Some modified death-related ceremonies and rituals through art and LGBTQ+ symbolism. Certain conflicts with healthcare services and biological families seemed hard to resolve due to power structures enforced by heteronormative rules, regulations, and laws.

Conclusion

Normative ways of understanding the death system exclude LGBTQ+ ways of dealing with EoL-issues. Drawing on these findings and research with other structurally marginalized people (e.g., indigenous people), we call for queering the death system to develop public health palliative care initiatives that are inclusive of anyone living outside the norm.

Conflict of interest

The authors report no conflict of interest.

Funding

FORTE: Grant number 2021-01956

Background: The burden of non-communicable diseases like cancer, diabetes, and hypertension is rising rapidly in India. Annually, 7.2 million Indians with end-stage disease need palliative care. Estimates suggest that less than 1% of these people receive palliative care in the country. Yet, research on access to palliative care services is missing.

Objective: To estimate the travel time to the nearest non-governmental palliative care center (PCC) - as a proxy of geographic access - across 36 Indian states and union territories (UTs).

Design: Geospatial modeling study.

Methods: Data on 526 non-governmental PCCs were collected and harmonized by Pallium India in November 2022. Geolocations were manually coded and validated. Our analytical pipeline combining multiple geodata resulted in two outcomes: a) median (interquartile range) travel time to the nearest PCC assuming motor vehicular transport and b) population % within 60 minutes of their nearest PCC using a motor vehicle. All findings were disaggregated by state and rural-urban residence.

Results: Nationally, the median (IQR) time to reach the nearest PCC was 118 (71-179) minutes. The median time to reach the nearest PCC was nearly double for rural (120 (72-180) minutes) as compared to urban areas (57 (16-108) minutes) and was the highest for the union territory of Ladakh (591 (412-881) minutes) and lowest for the union territory of Lakshwadeep (1 (1-2) minutes). The time to access in rural areas was worse compared to urban areas in all states. 39.9% of the Indian population had access to the nearest PCC within 60 minutes using a motorized vehicle. The urban population (68.3%) had better access than the rural population (29.3%). All Chandigarh and Delhi residents were within 60 minutes of their nearest PCC compared to 14.5% of Arunachal Pradesh residents. 22 states/union territories had less than 50% of the population within a 60-minute ride to the nearest PCC.

Conclusions: In this novel pan-India analysis, we found that PCC access varies widely across states and is poor for rural areas. The work has direct implications for targeted resource allocation and palliative care infrastructure development for equitable access. Future studies should assess access to specific palliative care services like access to pain relief medications in the country.

Background: Palliative care (PC) is not equally available to all Australians, due to geography, economics, workforce, awareness, and accessibility. There are known groups and communities who do not typically access PC services, including within rural, low-socio-economic, and culturally and linguistically diverse communities. With an ageing population, these disparities are forecast to increase.

Objectives: This 5-year research program (2022-2027) addresses deficits in accessing PC for such under-served communities, whilst strengthening what works well.

Design: Taking a public health perspective underpinned by theories of knowledge translation, co-design, and community engagement, we address micro, meso, and macro elements impacting the delivery and receipt of PC.

Methods: Our program includes 1. a 3-year longitudinal study following patients and families in the last year of life to identify PC needs and priorities within under-served communities, capturing real-time, lived experiences of those facing death and bereavement. Within communities and residential aged care facilities, we will identify the precursors to, triggers for, and consequences of those decision-points that see a change in care needs; 2. Supporting community leaders to share information about death, dying, and PC within their communities according to their priorities and preferences, measuring death literacy before and after a program of activities (all materials presented in preferred language); 3. a cross-sectional case-note audit of, and survey patients within urban and rural public hospitals, aged 55+ years with deteriorating health and increasing care needs, to document unmet needs and engagement with PC, with follow-up 12 months later to capture admission and mortality outcomes and variation according to sociodemographic and disease-related factors; 4. model the health workforce required to deliver PC meeting the needs of under-served populations; 5. a national discrete choice experiment to identify the optimal combination and relative of importance of characteristics affecting PC decisions, and differences when responding as patient or carer.

Results: This presentation is an overview and report on project aims, activities, and outcomes to date.

Conclusion: Through processes of engagement and relationship building with/within community, industry, academia, and government, our comprehensive program enables relevant, feasible, translatable, and sustainable change in PC access and delivery.

Background: People who experience structural marginalization are dying of preventable and treatable cancers because they cannot access the care and treatment that they need. Research suggests that such groups are not well-served by cancer services, and rarely, if ever, are cancer services designed to meet the needs of people experiencing structural marginalization. Organizational and systems-level changes are required to support approaches to cancer care that are equity-oriented.

Objectives: To engage people experiencing structural marginalization and their care providers in the co-development of evidence-informed recommendations to improve access to cancer services, and to increase capacity for equity-oriented cancer care.

Design & Methods: As part of a larger study informed by critical ethnographic methods, we conducted focus groups and semi-structured interviews with people experiencing structural marginalization (n=28), community-based health and social care providers (n=16), and clinicians and leaders in cancer care (n=16). Data collection included iterative cycles of engagement with participants and community members, where we (1) asked questions regarding how to make cancer care more equitable and accessible and (2) co-developed a set of recommendations for cancer care organizations. Data analysis followed an interpretive descriptive approach.

Results: This process resulted in multiple recommendations, including action-oriented strategies and tangible examples. For example, one recommendation was that careful attention be paid to service design to ensure that services are maximally accessible for people experiencing structural marginalization. This could include implementing collaborative models of care that better support social needs, such as instituting complex case rounds in collaboration with community-based services or cross-sectorally to support temporary accommodations for patients who are unstably housed and with otherwise not be able to receive cancer treatment.

Conclusion: Iterative processes of data collection, analysis, and community engagement resulted in the co-development of several evidence-informed, action-oriented strategies for cancer organizations to improve capacity for equity-oriented care. If implemented, these community-informed public health approach recommendations could improve access to and experiences of cancer care for structurally marginalized populations.

Background: Indigenous communities view dying as a social and community event where caregiving is provided by family and community. Family and community networks are important to Indigenous people, and kinship is integral to their culture. To meet the educational needs of community caregivers, a partnership was established with Indigenous communities in Canada to develop the “Walking Alongside Indigenous Peoples Who Are Seriously Ill: Education for Community Caregivers” curriculum.

Objectives: This curriculum aims to enhance the capacity of health and social care providers in Indigenous communities to provide community-based education and support to families and community members caring for loved ones with life-limiting illnesses. This curriculum helps improve the knowledge and skills of family and community care providers by providing education and resources on bedside care and supporting people's social, cultural, and spiritual needs.

Design: The curriculum is based on clinical best practices and follows a "train the trainer" format. It is rooted in the Indigenous Wellness Framework, which incorporates community’s experiences, culture, values, and beliefs into the education. An advisory committee reviewed the curriculum through the development process to ensure that it was culturally relevant and met the needs of community caregivers.

Results: This web-based curriculum includes a manual with over 90 supporting resources. It focuses on spiritual, emotional, mental, and physical wellness. It provides guidance on developing a care plan, making your wishes known, the palliative approach to care and the last days and hours of living. The curriculum has been introduced to over 200 Indigenous communities across seven provinces in Canada through community-based workshops.

Conclusion: This education provides a Canadian example of implementing a public health approach to palliative care education in an Indigenous context. The education outlines a community engagement process in developing and delivering community-based education. Lastly, the education provides examples of community-developed resources and discusses the potential global application to other contexts.