Unpaid carers need greater recognition and support to continue the care they provide to their families and friends – and Flinders University researchers have identified priorities outlining how to achieve this through new research.
Flinders University’s Research Centre for Palliative Care, Death and Dying has published a paper that recognises the increasing demand and reliance on unpaid carers 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 Centre for Palliative Care, Death and Dying, says that while the Australian Government recently introduced policy reforms to improve recognition of carers, 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 carers in Australia,” says Dr Javanparast.
The paper says research priorities include recognition and early identification of carers, timely and equitable access to support services, helping carers navigate services, support during the transition of care, post-care support, including grief and bereavement support, evaluation of existing services, and carer self-care and wellbeing.
“Carers are diverse, and it is important that support services are culturally sensitive and support the cultural and individual needs of carers. It is also important that carers are involved in research design, implementation and evaluation.”
The new study guides the design of carer-centred research to facilitate the translation of carer 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 carers with lived experience into the process of identifying research priorities. The relationship was strengthened by ensuring carer involvement in preparing journal articles and project reports.
These participants commented on the importance of research that engages carers 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 carers with lived experience, as well as other stakeholders, about what to research and how to research,” says Dr Javanparast. “This is foundational in developing a research agenda and building relationships and capacities for collaborative and participatory research about unpaid carers.”
Professor Jennifer Tieman, Director of the Research Centre in Palliative Care, Death and Dying, says “Carers give so much to the people they care for and to our systems. We need to understand how to recognise carers 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 carers, carers 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 wellbeing.”
Ensuring the specific issues facing carers were fully addressed, the research team included two carers with lived experience as co-authors of the first journal article examining how to best develop an appropriate research agenda for unpaid carers.
Phil Martin was one of the unpaid carers 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 carers in service delivery, research and policy development,” he says.
“The work complements and adds value to the National Carer Strategy currently being progressed through the National Action plan working group, and enhances the focus on best-practice ideals across programmes and services.
“The collaboration and exchange of ideas in the development of the manuscript were fantastic.”
Consumer co-author Annie Dullow says: “Involving carers and consumers in public policy, research, evidence translation and publications is an extension of how important it is to respect carer knowledge and experience in care services. It was a privilege to be involved in the carer roundtable and to learn from other carers, clinicians and researchers in identifying carer research priorities.”
The paper – “Research priority setting for unpaid carers of older adults, patients with palliative care needs and at the end of life in Australia,” by Sara Javanparast, Philip Martin, Annie Dullow, Allison Willis, Oluwatomilayo Omoya and Jennifer Tieman – has been published in Palliative Care and Social Practice. https://doi.org/10.1177/26323524261462959