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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.

    FAQs
  • 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.

    My Research

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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

Participatory research
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Your search has returned 11 results

  • Specific groups of carers, Culturally and linguistically diverse carers

    1.8.2018

    Focus groups with culturally and linguistically diverse carers in NSW

    Carers NSW

    This report reveals the findings of six focus groups which explored the experiences and needs of carers from CALD communities.

    CALD Focus group Participatory research Open access
    View
  • Developing skills and knowledge, Mentoring and coaching

    9.10.2019

    Carer-in-residence toolbox

    Leila Frijat, Paula Gleeson, Tania Teague

    The Carer-in-Residence toolbox is for employers interested in establishing a Carer-in-Residence role within their workplace.

    Employment Flexible work Participatory research Carer recognition 5 minute read Video
    View
  • Developing skills and knowledge, Communication skills

    15.12.2022

    Half the story

    Dementia Australia

    This resource provides useful information, tips, and strategies for those that want to consult in a meaningful way with people living with dementia.

    Dementia Participatory research Lived experience Report
    View
  • Recognition and inclusion, Inclusion in decision making

    5.3.2024

    Translating policy into practice by engaging older persons and their carers as co-researchers

    Hannah Beks, Suzanne Clayden, Emma West, Olivia King, Laura Alston, Sue Williams, Alesha Sayner, Catherine Huggins, Kevin McNamara, Ellen Gaffy , Deeble Institute for Health Policy Research

    This briefing calls for the greater involvement of older persons and their carers in participatory health research as 'co-researchers' to develop better solutions.

    Participatory research Policy Research Older people Report
    View
  • Service systems, Disability services

    1.2.2024

    Joint Standing Committee on the National Disability Insurance Scheme

    Commonwealth of Australia

    This General Issues report covers the implementation, performance, governance, administration and expenditure of the NDIS. Three key principles relating to the NDIS highlighted in the report were: choice and control; co-design; and sustainability.

    NDIS Participatory research Care sector Report
    View
  • Recognition and inclusion, Inclusion in decision making

    8.7.2024

    Setting priorities for mental health family carer research and advocacy in Australia

    Marianne Wyder,

    This article reports on the recent priority agenda for mental health family carer research and advocacy developed by a new Australia-based network of stakeholders and researchers with lived and living experience of supporting someone experiencing mental distress.

    Mental health carers Participatory research Policy Co-design Qualitative study
    View
  • Carer health and wellbeing, Prevention and early intervention

    11.6.2024

    How to support caregivers in general practice: development of the Caregiver Care Model

    Anna Mygind, Sara Marie Hebsgaard Offersen, Mai-Britt Guldin, Kaj S. Christensen, Mette Kjærgaard Nielsen

    The article discusses the development and pilot testing of the 'Caregiver Care Model', which aims to support caregivers in general practice by addressing emotional distress and grief.

    Mental health Palliative care Carer wellbeing Participatory research Qualitative data
    View
  • Recognition and inclusion, Inclusion in decision making

    28.3.2025

    Insights for good practice

    Carers NSW

    This document summarises the key themes arising from the Carer Knowledge Exchange (CKE) interactive webinar, ‘Connecting carer research to practice through collaboration’, which took place on Thursday 28 November 2024.

    Lived experience Carer inclusion Participatory research
    View
  • Recognition and inclusion, Carer recognition

    8.7.2024

    Setting priorities for mental health family carer research and advocacy in Australia

    Daniel Gor, , Family and Carer Research and Advocacy Network (FaCRAN

    The article presents a strategic agenda developed by the Family and Carer Research and Advocacy Network (FaCRAN) in response to reforms following the Royal Commission into Victoria’s Mental Health System.

    Carer recognition Mental health Advocacy Participatory research
    View
  • Carer health and wellbeing, Mental health

    15.8.2025

    Nurturing Creativity whilst Caring:

    Bryher Bowness, Samina Begum, Sarah Bicknell , Lana Samuels , Sudhir Shah , Stephanie Hess, Karen Martin, Debbie Bark , Claire Henderson, Vanessa Lawrence

    This study explores how Recovery Colleges can better support family carers’ wellbeing through a participatory action research project.

    Carer wellbeing Mental health Participatory research United Kingdom
    View
  • Specific groups of carers, Caring for someone with a drug or alcohol dependency

    14.4.2023

    “You Don’t Get That from Professionals”

    Noemi Tari-Kereszte, Noelene Armstrong, James A. Smith, Himanshu Gupta , Sam Goding, Sal-Amanda Endemann

    This paper introduces Circles of Support, a peer‑led recovery program co‑designed in Darwin for families and friends of people experiencing alcohol and other drug (AOD) use.

    Carer needs Support-seeking behaviour Support groups Substance use Qualitative data Co-design Participatory research
    View

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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.