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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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    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

Carer burden
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Your search has returned 27 results

  • Caring and society, Social value of caring

    20.12.2016

    Factors to consider for motor neurone disease carer intervention research

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

    This article provides insight into the experiences of those who care for someone with motor neuron disease.

    Motor Neurone Disease Carer burden Carer recognition Peer-reviewed journal article
    View
  • Carer health and wellbeing, Mental health

    21.12.2017

    Predictors of long‐term distress in female partners of men diagnosed with prostate cancer

    Melissa K. Hyde, Melissa Legg, Stefano Occhipinti, Stephen J. Lepore, Anna Ugalde, Leah Zajdlewicz, Kirstyn Laurie, Jeff Dunn, Suzanne K. Chambers

    This study investigated the long term stress experienced by female carers of a partner with prostate cancer.

    Longitudinal Mental illness Peer-reviewed journal article Cancer Carer burden
    View
  • Specific groups of carers, Caring for someone with a chronic health condition

    6.2.2023

    Supportive care for carers of people with high-grade glioma

    Diana Jones

    This study aimed to explore the impact of supportive interventions for carers of individuals with high-grade glioma.

    Carer burden High-grade glioma 2 minute read Family caregivers
    View
  • Service systems, Aged care services

    29.4.2023

    Navigating community-based aged care services from the consumer perspective

    Yuchen Xie, Myra Hamilton, Carmelle Peisah , Kaarin J Anstey , Craig Sinclair , UNSW Ageing Futures Institute; School of Psychology, University of New South Wales; Neuroscience Research Australia; Discipline of Psychiatry, University of New South Wales; Specialty of Psychiatry, University of Sydney.

    This study investigated the experiences of older adults taking a more active role in navigating the aged care system.

    Social networks Aged care Informal carers Carer burden Support-seeking behaviour Support services
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  • Service systems, Aged care services

    1.4.2024

    Literature review on the abuse, neglect, and exploitation of adults with disability and older people by carers

    Timothy Broady, Catherine Thomson, Ilan Katz, Sarah Judd-Lam

    This literature review discusses the risk factors involved with neglect, abuse, and exploitation of older people and adults with disability.

    Elder abuse Carer burden Disability
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  • Relationships and community, Social connection

    14.9.2024

    Sequential mediation model of social support, care burden, and internalized stigma among family function and depression in caregivers of patients with schizophrenia

    Teng Zhang, Ximei Wang, Bo Yang, Minsong Li, Liming Wang, Ce Yang, Chuanwen Fu, Zhengxu Li, Xuehui Zhang, Yangdong Guo, Nishang Zhang, Ensheng Pu, Jianzhong Yin , Social Psychiatry and Psychiatric Epidemiology

    This article explores how social support, care burden, and internalised stigma affect family carer of patients with schizophrenia in southwest China.

    Peer support Stigma Carer burden
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  • Service systems, Carer support services

    16.9.2024

    Becoming an inadvertent home care user: The transition for cohabitating partners

    Håkan Jönson, Tove Harnett

    This study explores how the lives of cohabiting partners are affected by home care services and the strategies they use to cope with the presence of care workers in their homes.

    Carer burden Carer support caregiver adaptation International publication
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  • Carer health and wellbeing, Carer wellbeing measures

    24.10.2024

    Delineating Care Recipient Burden Constructs

    Maja Kuharic, Brendan Mulhern, Lisa K Sharp, Robin S Turpin, A Simon Pickard

    The study developed the CARE-2B Scale to measure both the care recipient's view of their own burden (CR-SPB) and their assessment of the caregiver's burden (Proxy-CB).

    Carer burden Carer recognition USA Methodology
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  • Carer health and wellbeing, Wellbeing programs

    26.9.2024

    The weight of care

    Hui Ye, Jingjing Wei, Liang Gu, Yuanyuan Miao

    This article discusses the challenges faced by primary caregivers of children with Traumatic Brain Injuries (TBI). It highlights the emotional, physical, and financial burdens these caregivers endure while providing care.

    Carer burden male Carer support
    View
  • Carer health and wellbeing, Carer wellbeing measures

    31.1.2025

    Comparing the strain of male and female carers of cancer patients in Türkiye

    Nazli Ozbek, Ayse Kilic Ucar, Aygul Akyuz , International Journal of care and caring

    International publication Carer burden Carer wellbeing Türkiye
    View
  • Relationships and community, Social connection

    31.1.2025

    Unpaid Care Policies in the UK

    Heather Mulkey , International Journal of care and caring

    International publication Carer burden Social policy
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  • Developing skills and knowledge, Caring skills

    24.12.2024

    Efficacy of Health Literacy Interventions for Caregivers of Individuals with Neurodevelopmental and Chronic Conditions

    Thom Nevill, Jessica Keeley, Susan Hunt, Rachel Skoss, Olivia Lindly, Jenny Downs, Amanda Marie Blackmore

    Carers of individuals with neurodevelopmental and chronic conditions play a vital role in managing health needs, but many struggle with limited health literacy.

    Carer burden Carer education Carer support Health care services Support and Training for carers
    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.