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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.

    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

Qualitative data
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Your search has returned 21 results

  • 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
    View
  • Planning and transitions, Changes in the caring role

    31.12.2020

    Carers information technology project

    Ben Harris-Roxas, Jessica Harper

    This research project was a qualitative research collaboration between the South Eastern Sydney Local Health District (SESLHD) and the South Eastern Research Collaboration Hub (SEaRCH) to establish the information needs of carers in NSW.

    Qualitative data Carer support
    View
  • Planning and transitions, Changes in the caring role

    3.12.2021

    (How) Will it end?

    Lukas Hofstaetter, Emma Kirby, Giselle Newton, Iva Strnadova, Christy E. Newman

    Using a qualitative approach, this article explores the lived experiences of current and former carers, including carers’ concerns, opportunities and preferences for care endings, in order to gain insights that can be used to develop more effective pathways out of caring.

    Former carers Qualitative data Informal carers Peer-reviewed journal article Open access
    View
  • Specific groups of carers, Caring for someone with dementia

    11.1.2018

    I just can't please them all and stay sane

    Gemma Tatangelo, Marita McCabe, Ashley Macleod, Anastasia Konis

    Examining the relationship between family dynamics and adult child caregiver distress, this study seeks to better understand the experience of caring for an older relative with dementia and address problematic family dynamics in the caring context.

    Dementia Family Qualitative data Children and young people Family caregivers Peer-reviewed journal article
    View
  • Specific groups of carers, Caring for someone living with a mental illness

    3.9.2011

    Primary caregivers’ satisfaction with clinicians’ response to them as informal carers of young people with first-episode psychosis

    Terence V McCann, Dan I Lubman, Eileen Clark

    This article aims to explore carers’ experiences of mental health nurses and other mental health clinicians in regard to how they respond to them as carers of young people with first-episode psychosis.

    Qualitative data Mental health carers First-episode psychosis Children and young people Peer-reviewed journal article
    View
  • Carer health and wellbeing, Mental health

    16.9.2021

    Routines of isolation?

    Emma Kirby, Georgia van Toorn, Zarnie Lwin

    This article looks at patterns of social isolation and loneliness among carers using carers of people with a glioma as the basis of the research.

    Loneliness Cancer Qualitative data Peer-reviewed journal article
    View
  • Caring and society, Social value of caring

    21.4.2020

    Caregiving work

    Aspa Sarris, Martha Augoustinos, Nicole Williams, Brooke Ferguson

    This article explores some of the major themes and experiences associated with caregiving.

    Carer wellbeing Informal carers Qualitative data Family caregivers Peer-reviewed journal article
    View
  • Specific groups of carers, Caring for someone with dementia

    10.4.2018

    A person-centred approach to family carer needs assessment and support in dementia community care in Western Australia

    Samar Aoun, Chris Toye, Susan Slatyer, Andrew Robinson, Elizabeth Beattie

    This study identifies the support needs of informal carers of people living with dementia through conducting qualitative research.

    Dementia Family caregivers Qualitative data Carer burden Carer support Peer-reviewed journal article
    View
  • Service systems, Disability services

    30.8.2021

    Carers’ experiences of the National Disability Insurance Scheme workforce

    John Hurley, Marie Hutchinson

    This study used qualitative research methods to gain insight into carer experiences of engaging with the NDIS.

    NDIS Qualitative data Support services Rural and regional Carer support Peer-reviewed journal article
    View
  • Specific groups of carers, Young carers

    22.12.2016

    Change and adaptation in families with young carers

    Janet McDonald, Kevin Dew, Jacqueline Cumming

    This study used interviews to explore the experiences of families with young carers.

    Young carers Family caregivers Qualitative data Informal carers Carer burden Family Peer-reviewed journal article
    View
  • Specific groups of carers, Aboriginal and Torres Strait Islander carers

    1.12.2021

    ‘Sometimes they’re gammin, playing tricks, but sometimes it’s ears.’

    Samantha F Harkus, Kylie AJ Caso, Sharron T Hall, Carmen Kung, Toni N Manton, Sarah J Murthy, Giselle AL Olive, Trumaine M Rankmore, Nikkita L Roberts, Meagan L Ward, Kelvin M Kong

    This paper uses data from the Urban Hearing Pathways study to investigate avoidable hearing loss in young, urban Aboriginal and Torres Strait Islander children and their families.

    Aboriginal and Torres Strait Islander Qualitative data Support services Peer-reviewed journal article
    View
  • Specific groups of carers, Caring for someone at the end of life

    8.4.2013

    Transitioning from caregiving to widowhood

    Michelle DiGiacomo, Joanne M. Lewis, Marie T. Nolan, Jane Phillips, Patricia M. Davidson

    This article examines the transition from caregiving to widowhood via the experiences of older women who take on caregiving roles for their husband at the end of life.

    Widowhood Bereavement Qualitative data Grief Carer wellbeing Open access Peer-reviewed journal article
    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.