Conference Agenda

Background: Cancer is one of the leading causes of death worldwide. Caregivers (e.g., friends, families, neighbors) are essential sources of support for people with cancer across the continuum of care and become even more important towards the end-of-life. Research has shown how the social and structural determinants of health shape access to healthcare at the end-of-life, but little is known about how these determinants shape caregiving especially in contexts of poverty and homelessness.

Objective: The objective of this multi-site, Canadian study (2021-2025) is to provide a detailed description of caregiving in settings of homelessness and poverty to: (1) map who the caregivers are; (2) describe the care tasks that they do; and (3) describe contexts that shape caregivers’ experiences.

Design: This study employed an ethnographic research design informed by critical theoretical perspectives of social justice and equity. Interpretive thematic analysis was used to develop detailed contextualized accounts of caregiver experiences.

Method: We completed over 200 hours of participant observation and in-depth interviews with three groups of caregivers: (1) bio-legal family; (2) friends, neighbors, and ‘chosen’ family; and (3) community service providers. This was supplemented by in-depth interviews with key informants in the healthcare and social sectors (e.g., housing and shelters, harm reduction facilities).

Results: Preliminary data show how social and structural inequities shaped caregiving for all groups of caregivers in contexts of poverty and homelessness. Estrangement and complex relationships with bio-legal family meant that ‘traditional’ family caregivers were not always able or available for care. Support networks consisting of friends, neighbors, and workers often existed but their role at the end-of-life was not always clearly defined or understood by health and palliative care systems. Alongside traditional caregiving tasks, caregivers worked to meet social and structural determinants of health needs (e.g., food security, eviction prevention).

Conclusions: There is a need to better understand and enable the important, yet often invisible caregiving work in contexts of poverty and homelessness. Interdisciplinary and intersectoral collaboration alongside practical strategies to identify, engage, and support networks of care outside ‘traditional’ family models are needed to strengthen the quality of life for people with cancer at the end-of-life.

Background: Caring communities and local care networks are particularly important for older adults living in deprived communities. In terms of social participation, they can empower older people to be involved more fully in community life, accessing resources and opportunities that contribute to their overall quality of life. Fostering mutual aid, solidarity, and trust among neighbors plays an important role in strengthening care relationships and social capital (Wegleitner et al., 2020), which are related to the health of older people and therefore support health promotion efforts in old age and in the last phase of life. On a socio-political level, social inclusion depends to a large extent on the design of housing conditions, both in terms of construction and in terms of how communication and community processes are moderated.

Objective: We examine what interrelations exist within and among dimensions of old age-exclusion in a deprived community in Graz, Austria. Specifically, we look at a particular form of socio-spatial old-age exclusion in a given neighborhood and examine the ways it affects other forms of old-age exclusion and shapes relationships within that community. Considerations of perspectives of intersectionality and deliberate avoidance of reproducing a narrative of aging and decline are important.

Design and methods: We use mini-narratives from the qualitative data we collected as part of a community-based participatory research project and analyze them against the backdrop of concepts of social exclusion in old age/later life (e.g., Walsh et. al. 2020, 2021).

Results: The interim findings show that while different forms of old-age exclusion can arise simultaneously, some forms may go along with increased participation. More participation on the other hand may go along with increased solidarity within the community which bears the risk of broadening exclusion through privatization of care. Additionally, older people in deprived communities may adopt exclusion avoidance strategies in which they choose the “less evil” form of exclusion. The perceived lack of solidarity from other members of community may produce grievances and lead to conflicts deteriorating social relations in the neighborhood.

Conclusions: An analysis of interrelations within and among dimensions of old-age exclusion in neighborhoods reveals how different aspects of old-age exclusion interact with each other and offers deeper understanding of this phenomenon of later life.

Background: Community-based palliative care has taken various forms globally. In Indonesia, where death and dying are not openly discussed, palliative care services are still limited and have not yet been integrated into the health system. In Jakarta, a cancer care NGO, together with local government, developed a community-based palliative care initiative by enhancing the role of community health volunteers from other public health programs.

Objectives: To explore the implementation, potential, and challenges of the community-based palliative care model in Jakarta, Indonesia, where openly discussing approaching end-of-life is generally not culturally acceptable.

Design: Ethnographic study

Methods: The study is based on eight months of ethnographic research in 2022-2023 on palliative care provision in Jakarta, the Indonesian capital, by following the activities of community health volunteers. Qualitative research methods such as participant observations, semi-structured interviews, and focus group discussions were used.

Results: This study shows how the community-based palliative care model has the potential to support the continuum of care by building on existing social and health care structures. Driven by the communal value called ‘gotong royong’ (mutual support) and religious values, community health volunteers support patients in their neighborhood, although they also face logistical challenges. These challenges include lack of funding and public recognition, absences of palliative care policies and miscoordination with health workers. Furthermore, using the terms palliative care and end-of-life care can also be a challenge for some community health volunteers. One way they navigate this barrier is by saying, “We are just caring for our neighbors.”

Conclusion: Fostering the community-based palliative care initiative by enhancing the existing social and health care structure can be a solution to fill a care gap to improve care services, particularly in low- and middle-income settings. However, Indonesia's community-based palliative care model shows the need to address several challenges regarding policies, funding, coordination, and to be culturally sensitive in using palliative care terminology before scaling up or implementing such initiatives in other settings.

Background: Volunteers are key stakeholders in public health palliative care. Increasingly, they have pivotal roles in implementing patient navigation interventions. Yet, so far, there is no optimal evidence-based guideline on how to recruit them to implement such programs for practice nor research.

Objectives: To identify facilitators, barriers and strategies to optimize recruitment of volunteer navigators to implement a navigation program for older people with cancer and their families in Belgium, The Netherlands, Portugal, Ireland and Italy.

Design: A mixed-method research study embedded in a pragmatic, fast-track randomized controlled trial. Per country, an estimated 55 navigators are needed, recruited by navigator coordinators. The recruitment was initiated in August 2023 and will last until September 2024.

Methods: We use participant observations of monthly online group discussions among navigator coordinators; document analyses of recruitment materials and follow-up documents; semi-structured interviews with eight navigator coordinators; and a quantitative survey for navigators. Content analyses for the qualitative data and descriptive statistical analyses for the survey data will be performed.

Results: As of February 2024, about 115 navigators in total have been recruited across the different countries. Preliminary results from two monthly discussions reveal that countries differ in recruitment approaches. For instance, there are differences in the extent to rely on local stakeholder groups, as in the extent of use of materials (e.g. leaflets). Furthermore, there are some indications that using the term “end-of-life care” in external communication can hinder recruitment. An identified facilitator is the strong presence of a volunteer culture in a country, which helps Ireland in this case to recruit many volunteers from the beginning. The final and detailed results will be available in September 2024.

Conclusion: This study will highlight facilitators and barriers, and the strategies applied to address the barriers in recruiting volunteers for EU Navigate. More data and detailed results in September 2024 will further help us identify generic and country-specific facilitators and barriers to such recruitment. Overall, this study will provide evidence-based guidelines for optimal recruitment of volunteers for community-based health interventions. These guidelines can therefore serve as a bridge between forthcoming science and the volunteers of tomorrow.

Introduction: The need for palliative care continues to grow worldwide, due to an increase in ageing populations and a rise in non-communicable diseases. This study was about Improving Access to Palliative Care Services in Uganda through Health Promoting Palliative Care Approach: A Case of Mobile Hospice Mbarara.

Objectives: It was intended to; determine the level of awareness about Health Promoting Palliative Care approach among palliative care providers, examine the extent to which Health Promoting Palliative Care practices were carried out and establish the strategies being utilized by Mobile Hospice Mbarara to improve access to palliative care services.

Methods: The study relied on a cross sectional study design where both qualitative and quantitative data collection methods were utilized. The study population comprised of staff and volunteers at Mobile Hospice Mbarara including the. Data was collected using questionnaire and interview guide.

Results: Of the 58 respondents to the study questionnaire and interviews, 47 (81%) were female and 33 (57%) were volunteers while 25 (42%) were current or former staff of Mobile Hospice Mbarara. Majority of the respondents 48 (82.8%) were aware about Health Promoting Palliative Care approach. Only 23 (40%) affirmed that they were aware about the approach that utilizes research and innovation to inform clinical practice and policy. Only 22 (38%) were engaged in discussions about palliative care at community level. The majority 53 (91%) affirmed that political leaders were engaged in organization activities. Empowering staff at MHM was being done through availing staff with refresher courses.

Conclusion: There was still limited access to palliative care services. The study recommended appropriate training to increase staff awareness about health promoting palliative care. The study also recommended more investment around research to obtain evidence to inform and improve clinical practice and policy.