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‘Should we even have questions?’ From survey to exhibition – co-producing research about ‘mental health’ with carers and adults with learning disabilities

Published Date: 10.6.2024

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Theme: Recognition and inclusion

Sub-theme: Carer recognition

International publication UK Carer burden Policy Research Lived experience Report

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

Theme: Recognition and inclusion

Sub-theme: Carer recognition

View Publication International publication UK Carer burden Policy Research Lived experience Report

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

‘Should we even have questions?’ From survey to exhibition – co-producing research about ‘mental health’ with carers and adults with learning disabilities

Published Date: 10.6.2024

  • Organisation Name

  • Author/ Authors

    Katherine Runswick-Cole, Martina Smith, Sara Ryan, Christopher Hatton

  • Suggested citation (APA 7th edition)

    ‘Should we even have questions?’ From survey to exhibition – co-producing research about ‘mental health’ with carers and adults with learning disabilities. (2024). [Research article]. International Journal of Care and Caring,1–16. https://doi.org/10.1332/23978821Y2024D051

Long Summary

This article examines how research on carers of adults with learning disabilities often relies on surveys that fail to capture lived experience. Working in co-production with carers, the study found surveys to be inadequate and instead developed an online exhibition to share experiences more meaningfully. Key themes included diverse understandings of mental health, the ongoing impact of trauma, the burden of paperwork and the value of co-production. The findings suggest that policy and practice should reduce systemic stressors, acknowledge carers’ varied perspectives and adopt creative, participatory approaches that centre carers’ knowledge.

    Key Messages for Carers


  • The ongoing demands of paperwork and administrative requirements represent a significant source of stress, shaping both the practical and emotional aspects of caring.
  • Co-produced initiatives, such as exhibitions or storytelling platforms, can create opportunities for carers to share experiences in ways that foster belonging and influence wider awareness of caring.

  • Key Messages for Policy Makers


  • Carers’ experiences of mental health are shaped less by the caring relationship itself and more by systemic barriers, such as service access, administrative demands and limited future planning support.
  • Creative, co-produced approaches to research and engagement can provide more authentic insights than traditional survey methods, highlighting the importance of recognising carers’ knowledge alongside professional expertise.

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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.