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Research Library

The Carer Knowledge Exchange Research Library is a collection of recent Australian publications and other resources that contain reliable research about family and friend carers. It is constantly being added to, and you can suggest research to be included here.

There are two main ways to use the Research Library. The first is to search using the fields below. The second is to browse by category lower down the page.

For help using the Research Library, click here.

Please also see our Frequently asked questions page.

The publications in this research library may contain references to sensitive issues and cause distress. If you or someone you are with is in immediate danger, please call 000. If you feel upset or are in distress, you can contact Lifeline, 24 hours a day, 7 days a week by phoning 13 11 14 or texting 0477 13 11 14. For other information on support for carers please visit our support for carers page.

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  • How to use the Research Library

    Find out more about how to find a resource on the Carer Knowledge Exchange Research Library here.

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  • Add your research

    Is something important missing from the Research Library? Share your research or suggest research by another author using our submission form. For more information about how to create an account click here and for more information about how to upload a publication to the research library click here.

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Use the ‘filter my results’ function to further refine your search results. If you would like to start a new search, please use the ‘search for a resource’ function above

Lived experience
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Your search has returned 40 results

  • Specific groups of carers, Caring for someone living with a mental illness

    4.9.2025

    Exploring the Lived Experience of Young People with a Family Member Who Has Attempted Suicide

    Marianne Webb, Natasha Anderson, Alison Calear , Magenta Simmons , Sarah Bendall , Jo Robinson

    This is a phenomenological qualitative study exploring the lived experiences of young people with a family member who has attempted suicide.

    Children and young people Mental health Suicide Qualitative data
    View
  • Recognition and inclusion, Carer recognition

    10.6.2024

    ‘Should we even have questions?’ From survey to exhibition – co-producing research about ‘mental health’ with carers and adults with learning disabilities

    Katherine Runswick-Cole, Martina Smith, Sara Ryan, Christopher Hatton ,

    This article examines how research on carers of adults with learning disabilities often relies on surveys that fail to capture lived experience.

    International publication UK Carer burden Policy Research Lived experience Report
    View
  • Relationships and community, Family relationships

    9.2.2026

    A Scoping Review of Photo-Based Approaches to Understand the Lived Experience of Children with Medical Complexity, Their Family Caregivers, and Clinicians

    Nell E. Baumgarten, Danielle Faye Jonas , Jori Bogetz, Ellie Oslin, Elsa Ayala, Crystal Nogle, Ari Pollack, Ali Mendelson

    This article reviews research on how photo-based methods (such as photovoice, photo-elicitation, and photo-narratives) are used to explore the experiences of children with medical complexity (CMC), their caregivers, and clinicians.

    Children with disabilities Photo-based Scoping review
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  • Service systems, Aged care services

    5.3.2026

    Evaluation of younger people in residential aged care initiatives

    Nous Group

    The Royal Commission found that residential aged care is unsuitable for most younger people with disability. In response, the Australian Government set a goal of ensuring no one under 65 lives in RAC by January 2025.

    This evaluation reviewed the effectiveness and sustainability of government initiatives introduced since 2019 to reduce the number of younger people in RAC and identified lessons to guide future policy.

    Document Analysis Quantitative data Case study Lived experience Aged care Evaluation NDIS Disability
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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. We acknowledge Aboriginal and Torres Strait Islander peoples as the First Australians and Traditional Custodians of the lands where we live, learn and work.