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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

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Your search has returned 63 results

  • Service systems, Respite services

    1.4.2021

    Repositioning respite within consumer directed service systems

    Carers NSW

    An evidence-based report demonstrating the ways respite is an unmet carer need, and detailing opportunities for respite to be sustainably resourced.

    Wellbeing Respite Carer support
    View
  • Service systems, Aged care services

    23.2.2021

    What are the shared decision-making experiences of adult children in regard to their parent/s' health care in residential aged care facilities?

    Ainslie Monson, Joyce Hendricks, Deborah Sundin

    This paper looked at the shared decision-making (SDM) experiences of adult children in relation to their older parent's health care in residential aged care facilities (RACF).

    Decision-making Aged care Health care services
    View
  • Service systems, Mental health services

    17.11.2020

    Consumer perspective from people with a diagnosis of Borderline Personality Disorder (BPD) on BPD management

    Jessica Margot Proctor, Sharon Lawn, Janne McMahon

    This paper analyses how Australian consumer attitudes towards Borderline Personality Disorder (BPD) have changed overtime.

    Borderline Personality Disorder Stigma Mental health Peer-reviewed journal article Open access Accessible summary
    View
  • Service systems, Respite services

    10.11.2020

    Rethinking respite in Australia

    Lyn Phillipson, Keryn Johnson, Elaine Fielding, Elizabeth Cridland, Danika Hall, Christine Neville, Helen Hasan

    This article explores ways in which uptake of respite services can be improved among carers of people with dementia and reveals that more active support is needed to address carer decline, as opposed to passive respite information, which is often insufficient.

    Respite Dementia Carer burden Peer-reviewed journal article
    View
  • Service systems, Mental health services

    10.8.2020

    Post-traumatic growth: Health professionals as mothers of adult children with schizophrenia

    Debra Klages, Leah East, Kim Usher, Debra Jackson

    This paper describes how mothers as carers of adult children with schizophrenia experienced a complex traumatic process influenced by gender and the dominant ruling relations in healthcare. health professionals can play a central role in supporting mothers/carers in the care of their adult children with schizophrenia.

    Mental health Schizophrenia Lived experience
    View
  • Service systems, Aged care services

    14.5.2020

    Navigating the marketisation of community aged care services in rural Australia

    Suzanne Hodgkin, Pauline Savy, Samantha Clune, Anne-Marie Mahoney

    This article examines the advantages and challenges of the Consumer Directed Care programme, in which approved organisations bid for government subsidies and compete to provide community-living aged care services accessed via My Aged Care.

    Aged care Social policy Rural and regional Peer-reviewed journal article
    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
    View
  • Service systems, Health care services

    10.10.2019

    “I’m trying to stop things before they happen”

    Bronwen Merner, Sophie Hill, Michael Taylor

    This study investigated carer involvement when a care recipient is in hospital. Specifically, the study looked at the experience of carers of adult patients and how they contributed to the safety of the care recipient while they were in hospital.

    Carer wellbeing Health care services Carer stress Peer-reviewed journal article Open access
    View
  • Service systems, Health care services

    1.10.2019

    The experience and challenges of rural persons with cancer and their families

    Elisabeth Coyne, Valda Frommolt, Asiyeh Salehi

    This study sought to understand the experiences and challenges for individuals with cancer and their families from rural Queensland.

    Cancer Rural and regional Treatment burden
    View
  • Service systems, Disability services

    19.2.2019

    Barriers and exclusions

    This report provides an overview of the needs of refugees with a disability and their carers including direction on how policy makers can better support carers of refugees.

    Refugees Carer support Disability services 10 minute read
    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
    View
  • Service systems, Carer support services

    1.11.2018

    Hidden carers?

    Myra Hamilton, Jessica Botfield, Asha Persson, Christy E. Newman, Joanne Bryant, Kylie Valentine, Jack Wallace

    This article explores the experiences of those caring for people with HIV, recognising that there is a gap in carer research regarding the needs of this group of carers.

    Carer recognition Carer support Stigma Hidden carers HIV 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.