Projects and partnerships
Carers NSW leads and participates in a number of research projects in partnership with government, not-for-profit organisations and academic researchers to improve the carer evidence base.
Current research projects
The Carer Knowledge Exchange
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The Carer Knowledge Exchange is a research translation project led by Carers NSW and funded by the NSW Government that aims to improve outcomes for family and friend carers across Australia by connecting research to practice. You can find out more about the project here. |
The digital platform features:
- A growing, searchable Research Library containing the latest evidence about carers
- Opportunities to register for upcoming events and view recordings of past events
- Resources featuring carers' perspectives in our Carer Hub
- An interactive Discussion Forum
The Carer Knowledge Exchange is led by Carers NSW and proudly funded by the NSW Government. It was established as a partnership between Carers NSW and the Institute for Public Policy and Governance (IPPG) at the University of Technology Sydney from 2021-2024.
The National Carer Survey
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Every two years Carers NSW, together with the Australian State and Territory Carer Organisations, conducts a comprehensive survey to better understand what carers want and need. The National Carer Survey informs the advocacy, support provision, and strategic direction of Carers NSW and other carer organisations. |
Recent projects
Young Carer Research Project (2020)
This project was conducted with 28 young carers aged 16-25 from across NSW. During the peak of the COVID-19 lockdown from March to June 2020, Carers NSW conducted online interviews and focus groups with 28 young carers to better understand their experiences and support needs and to learn how to engage with them more effectively. The project was conducted with the support of a project advisory group comprising researchers, young carers and sector experts.
A toolkit conveying learnings from the project to promote best practice engagement with young carers was published in 2021 based on learnings from conducting the research, and in partnership with a range of experts.
Focus groups with culturally and linguistically diverse (CALD) carers in NSW (2018)
To increase our knowledge about the situation of CALD carers, and supplement the data collection of the 2014 Carer Survey, Carers NSW conducted six focus groups during May and June 2018 in the Greater Sydney and Wollongong areas. The project was conducted with the support of a project advisory group comprising researchers and CALD sector experts.
A toolkit conveying learnings from the project to promote best practice engagement with culturally and linguistically diverse carers was published in 2021 based on learnings from conducting the research, and in partnership with a range of experts.
Current research partnerships
Su-yin Hor (CI, University of Technology, Sydney): Partnering with residents, families and carers for person-centred infection prevention and control in residential aged care: developing strategies that are compassionate, appropriate and safe (2024 - 2028)
This project will investigate how we can keep residents, staff, and the community safe from infectious diseases, without compromising the rights, and health and wellbeing needs of older people in care. Researchers will partner with people in care, their families and carers, residential aged care providers and infection control experts, to develop and evaluate resources to support infection prevention programs that are compassionate, appropriate and safe for people in residential aged care.
Carers NSW is an Associate Investigator.
Funding: NHMRC TCR
Michelle O'Shea (CI, Western Sydney University): "Generation Sandwich Care": investigating and enabling work and wellbeing (2024 - 2026)
Industry partners: Carers NSW, Care & Living with Mercer
This project aims to provide a qualitatively rich evidence base to understand the intersectional lived experiences of Sandwich carers who are also engaged in paid employment or seeking to re-enter work. By understanding their nuanced experiences of negotiating “care” characteristically of ageing/frail relatives, “care of dependent children”, and paid employment, the research findings can inform policy and other supports reflecting the dynamic/ complex nature of caregiving for this expanding group.
Carers NSW is a Partner Investigator.
Funding: Project grant by the WSU Priority Research Initiative
Katherine Kenny (CI, University of Sydney): The Cost of Living (Well): A Sociological Study of Cost, Value and Care (2024 - 2027)
This study aims to:
- Systematically document the experiences and consequences of the multidimensional costs of care, from diverse stakeholder perspectives, across place, over time and among different illness trajectories (acute, curative, chronic, terminal);
- Uncover the cultural and structural barriers to open discussion of cost and value in healthcare, how they are interpreted across stakeholders, and how they shape service providers’ ability to care well;
- Co-design industry-leading consumer-, provider- and public-facing resources to advance public discussion of costs and value in healthcare;
- Advance new theoretical perspectives on the question of costs – and value - of care from multistakeholder perspectives and in relation to economic and social dynamics that are profoundly shaping illness and caring experiences in contemporary Australia.
Carers NSW is a Partner Investigator.
Funding: ARC Linkage Grant
Genevieve Steiner-Lim (CI, Western Sydney University): Project AI-ED: Using artificial intelligence to promote integrated care quality for older people by, reducing preventable ED presentations (2023 - 2024)
The aim of this research is to enable older people to remain independent, functioning, and diminish disability and deterioration by providing the right care at the right time in the right place – which may not be the Emergency Department (ED). This will be achieved by using artificial intelligence (AI) to develop an algorithm that identifies older people at-risk of potentially preventable ED presentations who can be safely and well-cared for in the community. The result will inform early intervention approaches that empower and integrate community and primary care.
Carers NSW is a member of the Steering Committee.
Funding: SPHERE Seed Grant
Myra Hamilton (University of Sydney): 'New models of replacement care for working carers: improving the time synchronicity of service systems and carers’ working time (2024 - 2028)
This research aims to:
- Provide critical new understanding of the replacement care arrangements that would support different groups of carers to enter, maintain, or increase paid work.
- Test and evaluate new models of replacement care and measure their effectiveness for carers’ work, care, and health and wellbeing outcomes.
- Provide a new conceptual framework based on temporalities of care, offering a new lens for understanding the way in which services meet carers’ work and care needs.
- Inform replacement care service provision and government care policy to promote sustainable work care arrangements that enable better social and economic outcomes among Australian carers.
Carers NSW is a Industry Partner and Partner Investigator.
Funding: ARC Mid-Career Industry Fellowship
Emma Kirby (CI, UNSW): When caring ends: Understanding and supporting informal care trajectories (2023 - 2027)
This project aims to advance understandings of how, why, when, and for whom caring ends, including the socio-cultural and relational factors that shape experiences before, during, and after caring. Using an innovative, multi-method sociological approach, and foregrounding carers’ voices, this project expects to generate new knowledge on the meaning and experience of care and caring. This project is significant in bringing together leading researchers and key carer-focused organisations, spanning service sectors and moving across care relationships, life stages and contexts. Expected outcomes include enhanced service capacity with tangible policy and practice benefits that will enable sustainable and fulfilling informal caring experiences.
Carers NSW is a Partner Investigator.
Funding: ARC Linkage Grant
Reema Harrison (CI, Macquarie University): iCanCarePlan: Co-designing quality end of life care for culturally and linguistically diverse people with cancer (2022 - 2024)
The project aims to enhance end of life care planning for culturally and linguistically diverse people with cancer by co-designing support and resources for culturally and linguistically diverse people at the end of life and their carers.
Carers NSW is a Partner Investigator.
Funding: Cancer Institute NSW
Nola Ries (CI, University of Technology, Sydney): Criminal Risk Behaviours among People living with Dementia (2023 - 2024)
The project aims to deepen the understanding of criminal risk behaviours and situations experienced by people living with dementia and their carers. This knowledge will enhance the services and supports that are available for carers, as well as training initiatives, and research and policy activities.
Carers NSW is a Partner Investigator.
Funding: UTS Research Collaboration Scheme
Past partnerships
Social Policy Research Centre (UNSW): Informing strategies to prevent abuse, neglect, and exploitation of adults with disability and older people by carers (2021-2024)
In 2021 the NSW Ageing and Disability Commission (ADC) commissioned the Social Policy Research Centre (SPRC), at UNSW in partnership with Carers NSW, to conduct the ADC Carers Project. The aim of the project was to provide the ADC with clear evidence-based findings, recommendations, and advice to inform their work with carers of adults with disability and older people. Specifically, the research was designed to inform the ADC’s handling of future reports about abuse, neglect and exploitation, ways for the ADC and service systems to better support carers and opportunities for early intervention and prevention strategies.
Carers NSW was a Partner Investigator.
Funding: NSW Ageing and Disability Commission
Celia Harris (CI, Western Sydney University): Co-designing a new implementation model for delivering support and education to carers of people living with dementia (2021-2022)
Family-and-friend carers of people living with dementia are at risk of psychological distress and carer burden. Unpaid carers are a large and growing population. With strain on the formal aged care system, and individual preferences to remain living at home as long as possible, developing tools and strategies to help carers to cope with their caring role, find positive meaning, learn the practical skills they need, and gain knowledge of the health system is essential. While members of our team have separately developed and tested such tools, implementation remains a key challenge. The demands on carers are immense, and carers report an inability to seek out and participate in self-directed education offerings. Therefore, we aim to develop a new model of implementation that capitalises on the ways in which carers already encounter the health system, so that support meets carers in contexts where they are already engaged, and resources are provided in ways that make them useful. The proposed research is essential groundwork to develop a new co-designed implementation model, generating a deep understanding of the carer experience within the health system and identifying currently under-utilised opportunities for intervention.
Carers NSW was a Partner Investigator.
Funding: SPHERE Seed Grant
Karen Hutchinson (Macquarie University): ‘Absent voices,’ understanding the needs of whole families living with parental ‘difficult to control’ epilepsy. (2019-2020)
This project aims to:
- Address gaps in our knowledge-base of ‘whole family experience’ of living with parental refractory epilepsy in NSW, Australia.
- Raise awareness of these families’ needs, and obtain crucial information to inform the co-creation of optimal service provision and health care delivery with wide stakeholder groups
- Enhance community engagement in this subject matter, in order to understand, recognise and support the whole family living with parental refractory epilepsy.
Carers NSW was a Partner Investigator.
Funding: Project grant by the UTS Centre for Carers Research
Michelle Villeneuve (University of Sydney): Disaster risk reduction practices that leave nobody behind (2019-2022)
This project aims to answer critical questions about how to assist people with disabilities (PWD) in disasters, what their support needs are and how they might help themselves to better prepare for disasters. Significance includes coupling a person-centred emergency preparedness tool with cross-sectoral processes to collect and use data about the support needs of PWD in emergencies, increase cross-sector communication and collaboration between emergency managers and community services, and improve equitable access for PWD to community level disaster risk reduction (DRR). The expected outcome will be the co-design of effective mechanisms that state & federal decision makers can use to scale-up disability-inclusive DRR across Australia.
Carers NSW participated in a advisory capacity.
Funding: ARC Linkage Grant.
Rebekah Grace (Western Sydney University): ReSPECT: Re-conceptualising services from the perspective of young people (2019-2022)
The ReSPECT project is aiming to make the voices of young people heard on issues of social and health service provision. It employs a participatory approach, engaging children and teens in re-envisioning the service system and in developing and trialling child-led service initiatives.
Carers NSW was a member of the Steering Committee.
Funding: ARC Linkage Grant.
Christy Newman (UNSW): My health, our family: documenting stories of family life in the context of HIV, Hepatitis B or Hepatitis C (Serodiscordance in family life) (2016-2020):
This project aims to produce the first empirical picture of Australian families affected by HIV, hepatitis C or hepatitis B. Qualitative research will be conducted with individuals, families and other stakeholders to reveal the interplay between diversity in family forms and understandings and experiences of serodiscordance, or mixed infection status. In developing a critical theory of serodiscordance that departs from the biomedical emphasis on ‘risk management’, novel insights are anticipated on accommodating difference and disruption, managing secrets and stigma, and responsibilising care and treatment within families. New and important knowledge will also be generated regarding the contributions of families to community wellbeing.
Carers NSW was a member of the Steering Committee.
Funding: ARC Linkage Grant.
For more information about these projects, please phone Carers NSW or email the Research team at research@carersnsw.org.au.
