By Kristina Walsh

Southern Vales Compassionate Communities and College of Nursing and Health Sciences, Flinders University

Compassionate Communities are recognised globally as a public health approach to improving end of life within the community. [1] They do this by shifting the culture of the current medical model of palliative care to an approach that promotes and encourages community action in areas such as health literacy, supporting carers and families to receive home-based end-of-life care and developing social networks that care for each other. [2] These endeavours intend to complement and support the services that already exist by identifying gaps and developing initiatives to fill them. 

Since late 2020, I have had the pleasure of being part of the development of the first compassionate community in South Australia.  This was seeded and supported by the Peak Body, Palliative Care South Australia.  As a movement, compassionate communities are firmly rooted in the community development space, driving action that has impact on the local population and making sustainable changes.  It has at times been a challenge as a health professional with my feet concreted into practice development within the community nursing setting.  I am grateful for my previous work experience in primary care which helped to develop my awareness of the Ottawa Charter for Health Promotion, as driving community action has been central to this work.  In terms of sustainability, important connections for our compassionate communities were made with the Onkaparinga Council community development team and with other local community groups, such as Health Cities Onkaparinga.

To learn more about the development of a sustainable compassionate community, the Healthy End of Life Project [2] identifies community development practices that underpin areas for community-driven action.  It refers to aspects of community development such as leading from behind by mentoring, coaching and encouragement, drawing on community strengths, respecting community members’ knowledge and encouraging leadership.  From my experience, community development teams advocate for this and encourage sustainability by offering their support and guidance for long-term solutions.  Being underpinned by the Ottawa Charter, HELP [2] assert that all aspects of their guide are crucial to be of benefit to the population.  These include identifying people willing to carry out this work, whole community participation, helping people to understand who does what and community-generated programs that are creative and fun.  Collaboration that helps communities to connect and generate resources, as well as building partnerships across all sectors empowers sustainability.  Work involving planning at the community level (strategic) and the individual level, policy at local government, community and primary health care, medicine and community service organisations are all crucial to the sustainability of compassionate communities as a public health movement.  There are some elements of HELP seeded throughout my experience of helping to lay the foundations of a local compassionate community. 

After two years of building and sustaining our group, a creative collaboration has evolved between the Southern Vales Compassionate Communities and Healthy Cities Onkaparinga (HCO).  With HCO’s roots firmly held in that of the Ottawa Charter, work is underway to establish more compassionate community groups within the City of Onkaparinga in South Australia.  The Onkaparinga Compassionate Communities Collaborative (OCCC) is a one-year Project conceived by Healthy Cities Onkaparinga and the Southern Vales Compassionate Communities and funded by the Department of Health and Wellbeing through the 2022 Palliative Care Grants Program Round. The Vision for OCCC is for Onkaparinga to be recognised as a Compassionate Community where people feel supported to live and die well in accordance with their wishes, feel supported at times of grief and loss and have information and confidence to make choices about end-of-life experience and care.  The Southern Vales Compassionate Communities will continue to operate as one of the groups within the OCC Collaborative, providing mentorship and support to the groups that are established through this project.

The work of Southern Vales Compassionate Communities has been driven by our community.  The skills of those within our community who are interested in sharing compassion for one another to live, die and grieve well have been developed through empowerment and mentorship with our community members leading successful projects over the last 2 years.  This has included Death Cafes, Art for the Heart (grief peer support group), Peer Led Advance Care Directive workshop for over 50’s, as well as other small community offerings of support.  We have made connections with local carer support groups and plan to extend our networks with residential aged care, retirement villages and dementia support groups in the future.  

From my experience, the strength of our Compassionate Community has been determined by the individuals within it.  Collective leadership is most productive and one that is centred around empowering and supporting each other to lead programs that are sustainable and that are evaluated in a way that is suited to community development.  Measuring the success of this work must involve evidence of lived experience, storytelling, and narratives. [3] It is suggested by Horsfall et al. that the development of appropriate and realistic measures of impact and knowledge production in this area is important and that leaders in the field of research ‘must advocate for the value of alternative types of knowledge as being valid, meaningful and rigorous.’ [3, p.12] Often Compassionate Communities rely on grant funding for projects which at times may require impact measures that are not always reflective of measures that are more civic-centred.  This is particularly important when considering the evaluation of compassionate community projects. 

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.

By Dr Trish Cain, Prof Davina Porock, A/Prof Eyal Gringart*

Centre for Research in Aged Care, Edith Cowan University

*Trish Cain, Davina Porock and Eyal Gringart are academic scholars and allies - not members of the LGBTI community

For many people, thoughts of needing aged care services are unnerving. For lesbian, gay, bisexual, transgender, and intersex (LGBTI) people, these thoughts can be especially daunting and complex. While facing many similar reservations as heterosexual and cisgendered communities, LGBTI older people must navigate a space shaped by historical legal, structural, and social exclusion. A fear of discrimination and biased care means that many Australian LGBTI older adults have negative expectations of service quality and are reluctant to engage with the aged care system. [1, 2]

While Australia may be considered a rapidly changing society with respect to LGBTI rights, many advances have been relatively recent [3] and for the current generation of LGBTI older adults, have occurred late in their lifetimes. Someone now aged 83, would have been 58 years old when homosexuality was decriminalised in Tasmania, 73 years old when their rights and needs were recognised by the LGBTI Ageing and Aged Care Strategy, and 78 years old when they could marry their partner. In the words of one LGBTI older adult: ‘I used to be illegal and now I’m a priority.’ [4]

Recent years have seen federal government-commissioned strategies [5] and targeted consultation [6] designed to foster inclusion and equity of care. However, the recent Royal Commission into Aged Care Quality and Safety highlighted many ongoing and unresolved issues. Extracts from publicly available witness statements and hearing testimony reveal several key concerns. For many LGBTI people, fear of discrimination remains, and as a result, some opt to hide their sexual identities. For example, ‘LGB people receiving home care services speak about the need to “straighten up their home” for fear of discrimination of poor care.’ [7] Concealing a part of one’s identity leads to being hidden in the system and needs remaining unmet.

To protect themselves, many will then hide or modify their identities, bodies, experiences, relationships, and/or attractions, rendering themselves invisible. This can lead service providers to assume they don’t have any L, G, B, T, or I clients and, therefore, that they do not need to consider their needs in service provision, planning and practice. [7]

Where there are attempts at inclusion, testimony suggests that while these may be well meaning, they are not always enough. ‘There is often a lot of goodwill around staff wearing rainbow badges or putting up welcome rainbow signs or stickers without actually doing anything to ensure the service is inclusive.’ [7]

The Royal Commission reports acknowledge that more work in this space is required. Fortunately, the way forward is relatively clear as ‘best practice approaches to LGBTIQ inclusive health and aged care service delivery are well understood in Australia, though they are not consistently implemented.’ [7] Changes in policies cannot ignore history. What is needed now is broad cultural change and a commitment to workforce training and education at all levels. It is only when everyone feels safe that Aged Care Quality Standard 1—’I am treated with dignity and respect and can maintain my identity’—can be said to be achieved. 

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.