Written by Dr Sara Javanparast, Senior Research Fellow, and Professor Jennifer Tieman, Director, Flinders Research Centre for Palliative Care, Death and Dying.
During National Palliative Care Week 2024, the Flinders Research Centre for Palliative Care, Death and Dying (RePaDD) hosted a forum for unpaid carers of palliative patients, titled the Unpaid Carers’ Forum: Recognition, Support, Action. Stakeholders from government, community-based organisations, academics, clinicians, carer advocacy groups as well as carers with lived experiences attended the forum. We had the privilege of having Ms Louise Miller-Frost, Federal MP for Boothby, South Australia and a member of the Government Standing Committee on Social Policy and Legal Affairs, who opened the forum and provided information about the national Unpaid Recognition Act currently under review.
The Unpaid Carers’ Forum provided attendees with the opportunity to learn from RePaDD researchers, staff from Carers SA and SA Health, as well as from carer representatives and carers themselves. The presenters shared findings about their projects, the lived experience of being a carer, as well as current policies and practices in relation to carer support. There was a strong sense of enthusiasm and engagement from participants in small groups to further discuss unpaid carers’ issues around equity, engagement, research, and policy.
Once again, we have been reminded of the great contribution that unpaid carers make to the Australian community, the health system and the economy. The figures presented by Carers SA demonstrated that, on average in South Australia, carers provide 101 hours of caring each week, with 47% providing 24/7 care – with a national average of 103 hours and 49% respectively.[1] These figures partly explain the issues and concerns that carers face with 1 in 2 experiencing high/very high psychological distress, 1 in 6 experiencing financial distress and over half being socially isolated.[1]
The need for carers to be recognised and acknowledged was repeated across the forum. This requires self-identification as a carer when somebody provides care to a loved one. This first step underpins carers’ help-seeking behaviours. Being recognised by health professionals, particularly GPs, is also important. Carers’ physical and emotional status being assessed separately from the patient with life-limiting conditions and being involved in decision making and information sharing are critical to meaningful care provider relationships. Carers are excellent sources of knowledge when it comes to patient assessment, care planning and monitoring. This knowledge needs to be recognised, respected and utilised.
Increasingly, carer networks of family members are all taking on parts of a carer role. This requires health and care teams to consider how to best communicate with a group of people providing care collectively or with carers who are not geographically proximate. Skills and frameworks are required to communicate difficult decisions and conflicts, while respecting privacy and confidentiality.
Navigation of health and social systems is also complex. Despite programs and support services in place, finding the right service at the right time is a major challenge for carers. They simply do not have time to navigate online resources, complete overwhelming paperwork and go through bureaucratic processes. The statewide Palliative Care Navigation Service, as presented by SA Health, seems to be promising in removing some of these barriers by accessing navigators who are able to liaise with services and make referrals. Considering cultural and social needs of the diverse groups of carers including marginalised communities is also critical to ensure equity in access to support services.
The forum was timely as both the national Carer Recognition Act 2010 and the South Australian Carers Recognition Act 2005 are currently under review. There was a consensus that carers legislation needs to have actionable and proactive measures built in to increase awareness and visibility of carers with validation of their role. A take home message was that a good policy is not enough unless it gets translated into real actions and improves carers’ experiences.
Finally, there was discussion on how research can make a difference in carers’ lives. Engaging carers in every step of research including design, implementation and evaluation was felt to be essential. A research project presented by NALHN and Flinders researchers provided an example of engaging with carers to identify information needs and codesign solutions at a hospital setting. Research needs to focus on strategic changes and measures of outcome, developing new tools and resources, understanding economics of activity, comparative value and effectiveness, and exploring the contribution of digital technology to knowledge and practice. Learnings from successful international models of carers support might be helpful. Equity impact assessment should be a key element of carers research and services. RePaDD is in a great position to lead some of this research, and contribute to stronger, more equitable and effective services that all carers, including those caring for people with life-limiting conditions, could benefit from.
Further reading
A recent article by RePaDD researchers, Dr Kristine Van Dinther and Dr Sara Javanparast, published in Palliative Care and Social Practice sought to investigate unpaid carers’ experiences in accessing information and resources for support with patient care with a specific focus on palliative care resources and to determine carers’ access to information and support for self-care.
- Van Dinther K, Javanparast S. Voices of unpaid carers: problems and prospects in accessing palliative care and self-care information, resources and services. Palliat Care Soc Pract. 2024 May 29;18:26323524241255386. doi: 10.1177/26323524241255386.
Drawing on extensive experience with research projects investigating the complex needs of carers, RePaDD has also compiled an evidence brief to provide information on a number of carer-related RePaDD research projects, providing evidence-based information, tools and resources to support carer health and well-being. The Evidence Brief: Carer Research is available free to view online.
References
- Carers NSW. 2022 National Carer Survey: Full report. 2023. p41-45.