Written by Judith Leeson AM, Ambassador, the Caring Futures Institute and Dr Sara Javanparast, Senior Research Fellow, Research Centre for Palliative Care, Death and Dying.
The Research Centre for Palliative Care, Death and Dying (RePaDD) has a research focus on carers of older adults, patients in need of palliative care and those nearing the end of life. In April 2025, RePaDD convened a research roundtable and an online focus group to bring together carers, advocates, policy makers, services, researchers and health and care professionals in the context of ageing, caring, palliative care needs and end of life (approximately 40 people). The aim was to share RePaDD’s work in this area and to discuss priorities and processes in developing a research agenda for carers. With increasing recognition from both state and federal governments of carers and the recent policy reforms, these events were very timely and attracted much interest.
In this blog, we would like to share some reflections on these engagement strategies and events from the perspectives of a carer and a researcher.
“As a person providing care, I believe the RePaDD team has shown a strong commitment to working with carers who have direct experience supporting people with life-limiting illnesses and those at the end of life. Together, we discussed a dynamic research plan that involves carers at every phase, recognising the value of their diverse experiences and making sure their voices influence the direction and language of research.
This partnership has been deeply rewarding. As a carer and advocate for evidence-based practice, I’ve felt genuinely included, appreciated, and proud to see my contributions acknowledged in published work. Being part of the process has offered me the opportunity to learn about research development, engage meaningfully, and help craft work that informs policies, programs, and resources tailored to carers’ needs.
What I value most is the evolving relationship between researchers and carers – built on mutual respect, deep engagement, and a shared commitment to making a positive difference. I have felt included and valued. This inclusive approach enhances the relevance of research and ensures that carers’ voices are not only heard but truly appreciated.”
The event provided huge benefits for researchers, too.
“There was great insight for the researchers in the room. A better understanding of the physical and emotional challenges that carers face will help us to identify their unmet needs and design/conduct research that informs the development of more responsive support services.
Once again, we have been reminded of the importance of a meaningful and timely engagement with carers and carers’ advocacy organisations in research. This will ensure carers’ voices are heard from the outset of a project, starting with formulating the research question and grant writing and continuing through data collection, analysis, and interpretation. Moreover, carers are diverse, and researchers must take the challenging path of engaging with hidden voices, including those who do not speak English and those living in rural and remote areas.
Carers, particularly current carers, are time-poor. We learned that being flexible is essential, allowing carers to adjust the nature and level of their involvement based on their changing circumstances. It was reaffirmed that building relationships takes time; therefore, adequate time must be allocated to foster trust and collaborate with carer partners in research design and implementation. Unfortunately, sometimes research cycles and timeframes do not allow for a meaningful engagement. Researchers should be aware of the different modes of communication when working with diverse groups of carers to ensure maximum engagement and response from carers. Most importantly, we should never forget to acknowledge carers’ time and contribution and provide them with feedback on research progress and results.”
The research roundtable and focus group were the first steps on a long journey. RePaDD is dedicated to maintaining momentum, expanding relationships, sharing activities and progress, and developing a roadmap and research agenda that recognises and addresses carers’ priorities and needs.