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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

Lived experience
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Your search has returned 40 results

  • Specific groups of carers, Caring for someone at the end of life

    26.11.2021

    Caring and grieving in the context of social and structural inequity

    Kristin Bindley, Joanne M. Lewis, Joanne Travaglia, Michelle DiGiacomo

    This article explores the experiences and needs of carers who have interacted with welfare services, focussing on end-of-life carers and grieving carers.

    Social welfare Palliative care Lived experience Peer-reviewed journal article Qualitative study
    View
  • Specific groups of carers, Young carers

    28.4.2022

    Caregiver or care receiver

    Leila Gholizadeh , Farnaz Rahmani, Fariborz Roshanghar, Geoffrey L. Dickens

    Using qualitative research methods, this article explores the experience of adolescent carers who care for a parent with severe mental illness.

    Young carers Qualitative data Mental illness Carer wellbeing Lived experience Peer-reviewed journal article
    View
  • Recognition and inclusion, Carer recognition

    19.10.2014

    Our voices

    This series of five short videos provides insight into the lives of carers of family members with mental illness who are from refugee and migrant backgrounds.

    Refugees Lived experience Carer wellbeing Video 5 minute read
    View
  • Service systems, Carer support services

    3.12.2019

    “A monster that lives in our lives”

    Nicole Hennessy Anderson, Cathy Gluyas, Susan Mathers, Peter Hudson, Anna Ugalde

    This study aimed to inform interventions for those who care for someone with motor neuron disease by gaining insight into the lived experience of these carers.

    Motor Neurone Disease Carer support Lived experience Peer-reviewed journal article Thematic analysis Qualitative study
    View
  • Specific groups of carers, Caring for someone with dementia

    2.10.2017

    What do children need to know about dementia?

    Jess R. Baker, Yun-Hee Jeon, Belinda Goodenough , Lee-Fay Low, Christine Bryden, Karen Hutchinson, Laura Richards

    This study explored the kind of messaging and content required for a dementia education program for children.

    Children and young people Dementia Lived experience Peer-reviewed journal article Qualitative data Focus group
    View
  • Specific groups of carers, Caring for someone with dementia

    27.7.2018

    Dementia as social experience

    Gaynor Macdonald, Jane Mears

    This book explores the lived experience of those who care for someone with dementia.

    Dementia Interdisciplinary Lived experience Book Stigma
    View
  • Caring and society, Caring during the COVID-19 pandemic

    22.2.2023

    COVID-19 experiences in Australia for people with MS and MS carers

    MS Australia

    This study explored the impact of COVID-19 on people living with MS and carers of people with MS.

    COVID-19 Lived experience Multiple sclerosis Qualitative study
    View
  • Recognition and inclusion, Carer recognition

    1.12.2022

    The secret life of carers with Jamila Rizvi

    Carers Australia

    This podcast developed by Carers Australia explores the unique stories of mental health carers across Australia.

    Podcast Carer recognition Carer support COVID-19 Lived experience
    View
  • Specific groups of carers, Aboriginal and Torres Strait Islander carers

    1.9.2022

    Sharing common grounds of caring

    Carers ACT

    This podcast explores the lived experience of First Nation carers.

    Podcast Aboriginal and Torres Strait Islander Lived experience
    View
  • Specific groups of carers, Young carers

    17.8.2022

    YC Bytes

    Carers NSW

    This podcast explores the lived experience of young carers in NSW, featuring a range of guest speakers who share their insights about being a young carer.

    Podcast Young carers Lived experience
    View
  • Recognition and inclusion, Carer recognition

    1.2.2022

    CarerCast

    Nicole Vass

    This podcast, hosted by Nicole Vass who cares for her father, establishes a platform for carers to share unique stories about their wellbeing and circumstances.

    Lived experience Podcast Carer support
    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
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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.