When caring ends: Understanding and supporting informal care trajectories

This project provides new insights into how carers navigate life beyond their caring responsibilities, as well as how such trajectories are shaped by institutional structures, norms, and social dynamics. We seek to better understand how, why, when, and for whom caring ends, including the socio-cultural and relational factors that shape experiences before, during, and after caring.

Informal, unpaid carers—such as family members and friends—play a crucial role in supporting people with disabilities, long-term health conditions, terminal illnesses, or frailty. Their care allows many people to continue living at home and helps ease the strain on healthcare and social services. In Australia, informal carers provide an estimated 2.2 billion hours of care each year. Despite this enormous contribution, carers lack recognition in society. Many carers struggle to transition out of their caring roles, and the skills they develop through caregiving are often overlooked or undervalued. Once their caring role comes to an end, carers often experience profound ‘aftereffects’, including poor health, loneliness, limited employment opportunities and financial precarity. The project is supported by an Australian Research Council Linkage Project grant (LP220100209) and brings together researchers from �ʹڲ�Ʊ Sydney, the University of Melbourne,

and Deakin University, in partnership with key Industry Partners Carers NSW and Carers Victoria. In this project we analyse waves of data from the bi-annual National Carers Survey, data from in-depth interviews, timeline maps, and workshops using cultural probes, with carers themselves, and data from focus group discussions with expert stakeholders working within organisations that support carers (e.g., support and advocacy services, healthcare, housing, family support, social care). Foregrounding carers’ voices, we aim to generate a comprehensive evidence base on the meaning, experiences, challenges and support needs for transitions out of caring. If you would like to find out more about this project, or contribute your insights or experiences, please contact Dr Zhaoxi Zheng (zhaoxi.zheng@unsw.edu.au).