HMN 2026: How to Chart palliative care priorities to recognize and support caregivers

Unpaid caregivers need greater recognition and support to continue the care they provide to their families and friends, and researchers have identified priorities outlining how to achieve this. Flinders University’s Research Center for Palliative Care, Death and Dying has published a paper that recognizes the increasing demand and reliance on unpaid caregivers to assist in care provision, which leaves them facing high levels of emotional, social, physical and financial burdens.

Lead author of the new publication, Dr. Sara Javanparast, from the Research Center for Palliative Care, Death and Dying, says that while the Australian government recently introduced policy reforms to improve recognition of caregivers, there is limited evidence about research priorities to enable the translation of new policies into practice. “We need evidence-based models to enhance the recognition and support for unpaid caregivers in Australia,” says Dr. Javanparast.

The study, “Research priority setting for unpaid caregivers of older adults, patients with palliative care needs and at the end of life in Australia,” is published in Palliative Care and Social Practice.

The paper says research priorities include recognition and early identification of caregivers, timely and equitable access to support services, helping caregivers navigate services, support during the transition of care, post-care support, including grief and bereavement support, evaluation of existing services, and caregiver self-care and well-being.

“Caregivers are diverse, and it is important that support services are culturally sensitive and support the cultural and individual needs of caregivers. It is also important that caregivers are involved in research design, implementation and evaluation.”

The new study guides the design of caregiver-centered research to facilitate the translation of caregiver policies into practice. It also assists in evaluating the effectiveness, cost-effectiveness and sustainability of existing and new support services.

Importantly, the Flinders researchers achieved this by including a wide range of stakeholders, including caregivers with lived experience, in the process of identifying research priorities. The relationship was strengthened by ensuring caregiver involvement in preparing journal articles and project reports.

These participants commented on the importance of research that engages caregivers meaningfully, respectfully, and in a timely and flexible manner to ensure maximum impact.

“The research priority-setting activity provided us with a great opportunity to hear the voices of caregivers with lived experience, as well as other stakeholders, about what to research and how to research,” says Javanparast. “This is foundational in developing a research agenda and building relationships and capacities for collaborative and participatory research about unpaid caregivers.”

Professor Jennifer Tieman, director of the Research Center in Palliative Care, Death and Dying, says, “Caregivers give so much to the people they care for and to our systems. We need to understand how to recognize caregivers in our systems and to ensure that their issues and concerns are identified and meaningfully addressed. Research has a vital part to play in this.”

“While there are many programs to support caregivers, caregivers still have problems accessing the right support services at the right time. They also lack the support they need to maintain their own health and well-being.”

Ensuring the specific issues facing caregivers were fully addressed, the research team included two caregivers with lived experience as co-authors of the first journal article examining how to best develop an appropriate research agenda for unpaid caregivers.

Phil Martin was one of the unpaid caregivers involved in the consultation activities. “The round-table discussions we had and follow-up processes facilitated a comprehensive contribution to help address the challenges being faced by unpaid caregivers in service delivery, research and policy development,” he says.

“The work complements and adds value to the National Caregiver Strategy currently being progressed through the National Action Plan Working Group, and enhances the focus on best-practice ideals across programs and services.

“The collaboration and exchange of ideas in the development of the manuscript were fantastic.”

Consumer co-author Annie Dullow says, “Involving caregivers and consumers in public policy, research, evidence translation and publications is an extension of how important it is to respect caregiver knowledge and experience in care services. It was a privilege to be involved in the caregiver roundtable and to learn from other caregivers, clinicians and researchers in identifying caregiver research priorities.”

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