Findings from a study looking at equity consideration in the national and South Australian palliative care policies and programs.
A blog post written by Dr. Sara Javanparast - Research Centre for Palliative Care, Death and Dying
In this post, I would like to share with you the findings of a study that I led in RePaDD. The study aimed to review key national and South Australian palliative care policy and program documents and examine the extent to which they are equity oriented.
We included 25 national and South Australian documents including policies and strategic plans, reports of government-funded initiatives, evaluation reports and needs assessment reports published over the last five years. These documents were publicly available from the government websites. Supplementary to the review, we conducted five individual interviews with key informants in South Australia to explore their views about equity in palliative care and the role of evidence and research priorities that can inform palliative care policy and practice in the future.
The study revealed several key points. Although the review was limited to documents published only in the last five years, a shift of focus towards equity was evident. The 2018 National Palliative Care Strategy [1] and South Australian palliative care needs assessment [2] and Strategic Framework [3] strongly acknowledged inequitable access to palliative care services. A series of federal government reports had the most extensive focus on equity and explored barriers to access to palliative care service for nine disadvantaged population groups that are identified in the Aged Care Act [4]. Nevertheless, the consideration of equity was mainly confined to improving access to palliative care for specific population groups rather than addressing systematic barriers and socio-cultural issues that underpin inequity in palliative care services.
Intersectoral collaboration and community engagement are key elements of equity in health care access and outcomes. Our review suggests that there is an increasing emphasis on collaboration within health sector (e.g., between primary and tertiary palliative care services) and minimal evidence of proposed or actual collaboration with sectors outside health for example community-based organisations, and Aboriginal community-controlled sector. Although collaboration with social sectors and Aboriginal organisations was explicitly or implicitly acknowledged in many documents, there was little evidence of their translation into actual action. Meaningful engagement with, and empowerment of, patients and their family is an equity issue but there was little evidence of specific actions and few examples of community engagement.
Out of four evaluation reports that specifically evaluated outcomes of national palliative care initiatives and programs, only one had ‘equity’ as an outcome evaluation domain. This highlights a gap in the area of palliative care program evaluation. Unless using an equity lens, the evaluation work will not be able to comment on the equity impact of the program at population level.
Finally, findings from key informant interviews confirmed evidence gaps and research priorities for an equity focused palliative care. Research on community-based models of palliative care and death journey and death literacy, and the need for baseline data and economic analysis to inform program design and processed was flagged as areas of priority.
Good news! This study has been published in the BMC Palliative Care journal (1.01MB pdf) if you are interested to read more about our findings.
What is next? We received additional funding to expand this study (thanks to the Caring Futures Institute, College of Nursing and Health Sciences). We have started reviewing palliative care policies and programs in other Australian jurisdictions. This will enable us to make a comparative analysis of policy contents and to engage with a wider range of stakeholders. These studies will be the basis for future research to further unpack driving forces and ideas that enable or constrain equity consideration in palliative care policy and its translation into practice.
References
Dr. Sara Javanparast
Research Centre for Palliative Care, Death and Dying