Chair: Sharon Hudson
a. Researching Compassionate Communities in Australia
All authors: Debbie Horsfall, Helen Psychogios, Rosemary Leonard, Alison Rahn
Presenting author: Prof. Debbie Horsfall
Compassionate communities and compassionate cities are emerging as an international strategy for implementing public health palliative care. There is also an emergent field of research documenting how these concepts can be operationalized, and what happens when they are. In this paper we will present research findings of a nation-wide compassionate communities’ project in Australia. In 2018 The GroundSwell Project, initiated two projects with a particular focus on community development and community-centered care: one was Blue Mountains Compassionate Communities and the second was the National Compassionate Communities Practice Forum, where over thirty communities from across Australia applied, with eight being finally selected. These communities nominated two representatives to be citizen researchers facilitated and mentored by researchers from the Caring at End of Life Research Team at Western Sydney University. The resulting practice-based research group also included the community lead of the Blue Mountains project. Research encounters consisted of: 1 x3 hour face-to-face research training session at commencement; 2 x 2-hour face-to- face focus groups; 4 x 2-hour virtual research group meetings and telephone and email support from the university researchers as requested/initiated by the citizen researchers over the life of the project. In effect, the group functioned as an action learning/action research group, developing data collection strategies and collecting their own data. Together we reflected upon strategies, barriers and opportunities as well as critical moments in operationalizing compassionate communities nationally. Our emergent findings highlight strategies of resistance and struggle, regardless of location with/in either health services or in the civic arena; the importance of developing language which speaks ‘both-ways’- to the dominant systems as well as the community; and, creative strategies to capture and document ‘what worked’ in the development of compassionate communities across Australia.
b. “We are all in this together”: Building capacity for a community centred approach to caring, dying and grieving in Australia
Dr Julieanne HIlbers, La Trobe University, South West Compassionate Communities Network
Network mapping and building formal and informal networks are key elements of Compassionate Communities community work. This presentation explores how the comprehensive assessments undertaken as part of the Australian www.myagedcare.gov.au program are enablers for mapping and enhancing social connectedness in relation to caring, dying, death and grief. It draws on practice based learnings from assessments undertaken in the South West of Western Australia from January - June, 2019 and the development of a networking wheel which assists assessors to map networks and make referrals.
c. Myanmar Community Health Care Delivery Model (MyHealth): An inclusive self-help group (ISHG) initiative for early detection and treatment of noncommunicable diseases
All authors: Prof. Anil Kumar Indira Krishnan, Technical Lead, Public Health, HelpAge International, Myanmar
Ms. Pyone Yadanar Paing, Health Officer, HelpAge International, Myanmar
Presenting author: Prof. Anil Kumar Indira Krishnan
Number of older people is growing substantially in Myanmar and the share is anticipated to increase from 9 % in 2014 to nearly 25 % by 2050. 68% of all of deaths are due to non-communicable diseases (NCDs) and some of the NCDs require palliative support. HelpAge International (HAI) currently implementing Strengthening public health capacity to respond to Myanmar’s disease transition a five years project supported by European Union aims to contribute for achieving universal health coverage. HAI developed Older Person’s Self-Help Groups (OSHGs) model, utilizes community participation and leadership from older women and men to address key issues for their community.
By incorporating health in to OPSHGs aims to provide referral services to patients and identify community based palliative care support for a sustainable solution to improve the quality of life at the later stage of the life of older persons.
A pilot initiative involves 7 OSHGs on screening for diabetes, hypertension, oral cancer and social mobilisation to improve access to NCD services using diagnostics equipment and guidelines for screening, referral and identification of palliative care requirements. Real time data were monitored, and patient information were provided to the nearest community clinics for follow up.
Preliminary findings reveal that out of 1254 screened, 30 % referred to the community clinics and there were 13 bed bound older persons who are currently suffering from stroke, cancer etc. The care givers reported that they need financial, social and psychological support. Another important observation was the interaction with the peer group members found to be great relief to the bed bound patients and caregivers.
Community based palliative care are associated with reduced health care costs and better psychological support to patients and caregivers. This innovative model would be appropriate in low resource setting where health human resources are limited for implementing palliative care.
d. Embeddedness of volunteers in Belgian palliative care services: A survey of volunteers across the health care system
All authors: Steven Vanderstichelen, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Prof. Joachim Cohen, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University)
Yanna Van Wesemael, Palliabru
Prof. Luc Deliens, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Prof. Kenneth Chambaere, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Presenting author: Prof. Kenneth Chambaere
Title: Embeddedness of volunteers in Belgian palliative care services: A survey of volunteers across the health care system
Background: The empowerment and engagement of volunteers and volunteer-professional collaboration in palliative care (PC) services can facilitate a more comprehensive contribution of informal care networks, provides a link with the community and aids to bridge the gap between professional and community care. Insights into volunteer embeddedness and how it can be improved can help shape and optimize supportive professional environments for volunteering in Compassionate Communities.
Aims: To describe volunteers’ involvement in organisation of care and collaboration with professionals, and how they evaluate this.
Design: Postal survey of 2273 volunteers across dedicated and generalist PC services in Flanders and Brussels in 2018.
Results: Response was 35%. Two thirds of volunteers are often to always informed about organisation of patient care and around half feel the organisation often takes their opinion into account, while a minority report having decision rights (18%) or autonomy (24%). For some, their organisation fails to inform (17%), consult (27%), take into account their opinion (21%), give them decision rights (20%) or autonomy (16%) often enough. Across healthcare organisations, volunteer-professional collaboration is (very) low, and mostly limited to information sharing – as opposed to task coordination or decision making. However, in dedicated PC services nurse-volunteer contacts are fairly frequent and often involve task coordination (46%). Ambiguity regarding tasks, agreements and/or rules (15%) and lack of information exchange (14%) are the most cited barriers to volunteer-professional collaboration. Volunteers seem least embedded in nursing homes and community healthcare services.
Conclusion: Some volunteers are open to a higher degree of involvement in the organisation of care in PC services. Collaboration with professionals seems lacking both in width and in depth. In Compassionate Communities, PC services, particularly those with strong community links, can endeavour to enhance the embeddedness of their volunteers and support them into more comprehensive roles as exponents of community care.