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.

Carers NSW 2020 National Carer Survey - Summary report launched!

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 with the support of the National Network of Carer Associations. 

The 2020 National Carer Survey: Summary report was launched on Sunday 11 October 2020 to mark the beginning of National Carers Week and can now be downloaded online here.

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.



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