Contributing to carer research is an important part of our role as a peak body representing carers’ needs and interests.

Carers NSW is committed to undertaking and supporting high quality research that builds the evidence base about what works to support carers. 

We conduct internal research and evaluation projects and partner with a range of external researchers to conduct, promote and disseminate carer research. We only support research that is ethically conducted and specifically relevant to carers.

Young Carer Research Project report released

On 15 July 2020 Carers NSW released the summary report on findings from research conducted with 28 young carers aged 16-25 from across NSW. 

A number of recent studies have highlighted the challenges facing young people as a result of the COVID-19 pandemic. Like their peers, young people aged 16 to 25 who are caring for a family member or friend have experienced significant change and instability during this unprecedented period.

During the peak of the COVID-19 lockdown, 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 summary report released today includes powerful stories of young people caring for loved ones while juggling study, work, family and social responsibilities.

A toolkit conveying learnings from the project to promote best practice young carer engagement is currently in development and will be released by November 2020.

Carers NSW 2020 National Carer Survey

Every two years Carers NSW ask carers across NSW about their experiences and what support they need. In 2020 for the first time the Carers NSW Carer Survey was a national survey, conducted in May-June 2020 with the support of the National Network of Carers Associations. 

The online survey closed on 30 June 2020 and analysis of responses is currently ongoing in preparation for a high level report on key findings that will be published during National Carers Week on October 2020.

Contact our Research Team

The Carers NSW Research Team can advise on:

  • Research conducted, supported and promoted by Carers NSW
  • Opportunities to promote external research projects to carers
  • Potential formal research partnerships
  • Facts and figures about carers, based on our own data collection and other key data sources (more information below)

To contact our Research Team, phone 02 9280 4744 or email

Participate in carer research

Carers can express their interest in participating in research by signing up to the Carers NSW Research Community, a network of carers living in NSW, aged 18 years and over who receive a monthly email listing current research opportunities. All projects promoted by Carers NSW are vetted to ensure that they are ethical, of high quality and relevant to carers. Participation in any research opportunities is entirely voluntary.

Keep up with the latest carer research

Carer Research and Knowledge Exchange Network (CAREN)

CAREN is a freely accessible, online knowledge exchange resource for anyone who requires carer-related knowledge. CAREN is based on a scoping review of carer-related research and knowledge funded by the National Institute for Health Research School for Social care Research (NIHR SSCR). Carers NSW CEO, Elena Katrakis, is the Deputy Chair of the international management team.

International Journal of Care and Caring

The International Journal of Care and Caring is a new multidisciplinary journal designed to advance scholarship and debate in the important and expanding field of care and caring. Multidisciplinary and international in scope, it publishes high quality contributions on care, caring and carers from all regions of the world. IJCC has a broad focus, covering care and caring for people of any age who have long-term conditions, disabilities or frailties, or who are seriously ill or near the end of life. It explores the economic, organisational, political, social, legal, familial, transnational and ethical settings in which this care occurs.

Carer data

The Research Team frequently receives enquiries and requests from researchers, service providers and members of the community about carer statistics. We are more than happy to advise (our contact information is above), however the following key sources of carer data are freely available and are a great place to start for carers and other stakeholders examining the carer evidence base:

See our Policy Publications and Research Publications pages for other published data on carers. If there is a particular topic of interest that does not already appear in these publications, we welcome your suggestions for future publications.

  • Carer Survey

    Every two years Carers NSW conducts a comprehensive survey to better understand what carers want and need.
  • Projects and publications

    Carers NSW supports a range of research projects and publications on the results of completed research projects conducted by or in partnership with Carers NSW.



High Contrast Switch

Carers NSW acknowledges the Traditional Custodians of the land, Elders past and present and all Aboriginal people.