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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

  • Relationships and community, Family relationships

    9.4.2019

    Engaging the person with young-onset dementia

    Imelda Gilmore

    This article shares first-hand the lived experience of Imelda Gilmore who cared for her husband with young-onset Alzheimer’s disease.

    Dementia Carer recognition Lived experience Younger onset dementia Open access Peer-reviewed journal article Case study
    View
  • Specific groups of carers, Aboriginal and Torres Strait Islander carers

    12.8.2018

    Interacting with providers

    Anna Green, Penelope Abbott, Patricia M. Davidson, Patricia Delaney, John Delaney, Patrick Patradoon-Ho, Michelle DiGiacomo

    New research into Aboriginal carers’ experiences of accessing services and support for their child with a disability indicates a lack of cultural awareness and the presence of racism, with the authors arguing that a community-led approach can help counter intersectional oppression.

    Aboriginal and Torres Strait Islander Children and young people Disability Health care services Qualitative data Lived experience Open access Peer-reviewed journal article Qualitative study
    View
  • Carer health and wellbeing, Prevention and early intervention

    15.1.2018

    Physical and psychological health of carers of young people with first episode psychosis

    Philip Ward, Celia Loneragan, Julia Lappin, Jackie Curtis, Abner Weng Cheong Poon

    This article investigates the physical and psychological impact on carers of caring for a young person with first episode psychosis.

    Carer burden Children and young people Lived experience Mental health Peer-reviewed journal article Quantitative data
    View
  • Service systems, Health care services

    30.1.2019

    What would I want?

    Irja Haapala, Ashley Carr, Simon Biggs

    This article draws on data from people with dementia, their carers and support service professionals to assess public health campaigns for dementia.

    Dementia Lived experience Open access Peer-reviewed journal article Qualitative study
    View
  • Service systems, Carer support services

    27.9.2021

    Care factor

    Kristine Rawlinson, Sara James

    This is a podcast about the carer journey which highlights the impact care has on a family and the many holes within the system of support for carers.

    NDIS Lived experience Support services Carer support Podcast
    View
  • Service systems, Health care services

    23.5.2013

    ‘You say treatment, I say hard work’

    Adem Sav, Elizabeth Kendall, Sara S. McMilan, Fiona Kelly, Jennifer A. Whitty, Michelle A. King, Amanda J. Wheeler

    This publication explores the impact of proactively treating and managing chronic illness on carers and the people they care for.

    Chronic illness Treatment burden Lived experience Financial stress Peer-reviewed journal article Qualitative study Qualitative data
    View
  • Specific groups of carers, Caring for someone with autism

    1.1.2017

    Understanding carers' lived experience of stigma

    Timothy Broady, Gerard J. Stoyles, Corinne Morse

    This article investigates carers’ perceptions of stigmatisation when caring for a child with autism.

    Stigma Lived experience Discrimination Autism Open access Peer-reviewed journal article Qualitative data
    View
  • Caring and society, Carer statistics

    1.10.2016

    Carers NSW 2016 carer survey

    Carers NSW

    The Carers NSW Carer Survey collects information about carers which is then used to guide the direction of the organisation and to facilitate systemic advocacy for carers.

    Survey Lived experience Work and care Carer wellbeing Report
    View
  • Caring and society, Caring during the COVID-19 pandemic

    1.5.2020

    The COVID-19 pandemic

    Carers NSW

    This consultation report explores the impact of the COVID-19 pandemic on carers.

    COVID-19 Support services Lived experience Consultation Report
    View
  • Specific groups of carers, Young carers

    29.4.2019

    The emotional well-being of young people having a parent with younger onset dementia

    Karen Hutchinson, Chris Roberts, Susan Kurrle, Michele Daly

    This article focuses on the lived experiences of young people caring for a parent with younger onset dementia.

    Children and young people Young carers Lived experience Younger onset dementia Support services Carer wellbeing Peer-reviewed journal article Thematic analysis Qualitative study
    View
  • Specific groups of carers, Caring for someone with dementia

    1.10.2018

    Feeling invisible and ignored

    Karen Hutchinson, Chris Roberts, Pamela Roach

    This article analyses the effects that younger onset dementia has on the whole family through interviews with impacted individuals.

    Young carers Younger onset dementia Qualitative data Lived experience Open access
    View
  • Specific groups of carers, Young carers

    1.1.2021

    Young carer advocacy project

    Little Dreamers

    This advocacy report by Little Dreamers Australia, comprehensively explores the experiences of young carers around Australia and provides four key recommendations to improve the quality of life of young carers.

    Young carers Advocacy Lived experience Quantitative data Report
    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.