“Where’s the Support for Us?”: Exploring the Lived Experiences of Significant Others Who Care for People with Disability in Australia
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First published online 01 July 2025.
Why this study was done
This study explored the experiences of family members, friends, and other unpaid carers who support people with disability in Australia. These carers often provide essential daily support, but their own needs and experiences are frequently overlooked.
What the study did
The researchers spoke with people who provide informal care and support to individuals with disability. They asked about the challenges they face, the supports available to them, and the impact caregiving has on their lives.
What the study found
Unpaid carers provide a significant amount of support, often filling gaps left by formal services and government programs.
Many carers experience stress, exhaustion, financial pressure, and impacts on their own health and wellbeing.
Carers often feel invisible, undervalued, and excluded from decision-making processes about the person they support.
Accessing support services can be difficult, confusing, and time-consuming.
Many participants felt there was insufficient recognition of the important role they play within the disability support system.
What this means
People with disabilities often rely heavily on family members and other informal carers. When carers do not receive adequate support, both the carer and the person with disability may be negatively affected. The study highlights the need for better recognition, inclusion, and support for carers as part of Australia's disability system.
This study was conducted by:Ms. Chelsea Marsh, Dr. Alicia Yon, Professor Elizabeth Kendall, and Dr. Kelsey Chapman
For other accessible formats, please see the column to the right.
Disclaimer: The QDRN has utilised generative AI to refine the wording of this plain language summary. All content has been checked for accuracy, appropriate tone, and clarity and approved by the author.
First published online 01 July 2025.
Why this study was done
This study explored the experiences of family members, friends, and other unpaid carers who support people with disability in Australia. These carers often provide essential daily support, but their own needs and experiences are frequently overlooked.
What the study did
The researchers spoke with people who provide informal care and support to individuals with disability. They asked about the challenges they face, the supports available to them, and the impact caregiving has on their lives.
What the study found
Unpaid carers provide a significant amount of support, often filling gaps left by formal services and government programs.
Many carers experience stress, exhaustion, financial pressure, and impacts on their own health and wellbeing.
Carers often feel invisible, undervalued, and excluded from decision-making processes about the person they support.
Accessing support services can be difficult, confusing, and time-consuming.
Many participants felt there was insufficient recognition of the important role they play within the disability support system.
What this means
People with disabilities often rely heavily on family members and other informal carers. When carers do not receive adequate support, both the carer and the person with disability may be negatively affected. The study highlights the need for better recognition, inclusion, and support for carers as part of Australia's disability system.
This study was conducted by:Ms. Chelsea Marsh, Dr. Alicia Yon, Professor Elizabeth Kendall, and Dr. Kelsey Chapman
For other accessible formats, please see the column to the right.
Disclaimer: The QDRN has utilised generative AI to refine the wording of this plain language summary. All content has been checked for accuracy, appropriate tone, and clarity and approved by the author.
