Get Involved
The Carer Knowledge Exchange is more than just a digital platform. It is also a large, diverse network of people with an interest in carers and in connecting research to practice. There are many ways you can get involved, including regular events and activities promoted to our mailing list and posted here.
Upcoming events
The Carer Knowledge Exchange team organises regular, free events for our networks to connect, share the latest evidence about carers and learn from each other. These include webinars, workshops and an annual Research Incubator event.
Research Participation Opportunities
If you are a researcher looking to recruit carers to participate in a research project, please sign up to submit your call.
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Until 31 December 2028
Experiences of Caring for a Person Living with Psychosis and/or Bipolar Disorder
Do you provide care to a person who has experienced psychosis and/or bipolar disorder?
We would like to hear from you.
Researchers at Monash University are seeking to understand what it is like to care for a person who has experienced psychosis and/or (hypo) manic episodes. This information will help us improve the way we can provide support.
Participation in the study is voluntary and involves completing an online survey. The survey takes approximately 60 minutes to complete, but can be saved and completed over multiple sittings.
To participate, use the link below.
https://redcap.link/5xifi1uc
For further information,
email carestudy@monash.edu -
Until 31 December 2027
Improving health equity in dementia care
Are you caring for someone living with dementia? We want to hear from you.
This study aims to understand carers' experiences and needs to help improve dementia support services and guide the development of more culturally responsive and inclusive dementia care programs
Who can take part?
You can take part if you are a family member, friend, or other relative providing formal or informal care and support to a person living with dementia. We are especially interested in hearing from carers from diverse cultural and linguistic backgrounds.
What is involved?
A short, confidential online survey about your background, understanding of dementia, mental health and wellbeing, and use of support services. -
Until 31 December 2027
Experiences in accessing post-diagnostic care for people with young onset dementia
Our research aims to explore and understand people's experience of accessing post-diagnostic support, including NDIS, following a diagnosis of young onset dementia. Young onset dementia is where symptoms start before the age of 65 years. We are eager to hear from people in the community and better understand the challenges they or their carers have faced in accessing NDIS, as well as what worked for them in the process. We hope that through this research we will identify gaps and find ways to improve post-diagnostic care for people with young onset dementia.
Whats involved?
* Online survey of ~25-30 mins
* Questions about the dementia diagnosis, challenges, and experience accessing support services including NDIS
Who can participate?
* People with young onset dementia
* Family members and carers
* Formal support workers/service providers -
Until 13 July 2026
Exploring the experiences of family members of critically ill patients undergoing an interhospital transfer: a qualitative descriptive study
We are seeking consumer and carer participants for a research study. We are conducting a study exploring the experiences of those who have had a family member transferred from a rural or regional location to a metropolitan hospital, particularly those admitted to the intensive care unit (ICU). The study will help hospitals improve the support provided to families during this time. We are seeking participants for two different opportunities:
1. Consumer/carer research partner (1 position available)
We are looking for someone with lived experience as a family member or carer of a patient admitted to a metropolitan hospital, ideally via an interhospital transfer and admitted to the intensive care unit.
What this involves
- Reviewing interview questions and participant information documents
- Providing your feedback on clarity, wording and relevance
- Contributing to discussions during the data analysis phase to ensure findings reflect lived experience
Commitment
- Approximately 3 meetings over 9-12 months
Reimbursement
- $100 per meeting
2. Pilot interview participants (up to 2 people)
We are also seeking consumers/carers to take part in pilot interviews to help refine the interview questions before formal recruitment begins.
What this involves
- A 1-hour online interview
- Sharing your experiences of supporting a family member through an interhospital transfer (including ICU admission where applicable)
- Helping us test the clarity, flow and relevance of interview questions
Important information
- Interviews will be audio recorded and transcribed
- Data will not be included in the final study analysis
- Data will be securely stored and destroyed once no longer required
Reimbursement
- $50 gift voucher
If you are interested, please contact Ashly Vu (ashly.vu@act.gov.au). -
Until 30 June 2026
Has your caring role come to an end? Are you a former carer?
Researchers from UNSW Sydney, the University of Melbourne, and Deakin University, in partnership with Carers NSW are conducting a research study to improve understanding of transitions and pathways out of caring. We are looking for carers whose caring has come to an end, to share experiences of their experience as a former carer.
Your participation will involve attending two online workshops (set 4 weeks apart) of 4-5 participants, facilitated by research team members, at a time that suits everyone. In these workshops, you will meet with other former carers and hear other people’s stories. You will also be provided material (e.g., notebooks, art supplies) to document your experiences and stories about care endings in your preferred ways. You can share these stories and documents with other participants and the research team.
You will receive a $30 gift card for each workshop you attend. If you are a former carer and would like to contribute, please contact the research team for further information: Professor Emma Kirby (emma.kirby@unsw.edu.au; 02 9385 9065); Dr Zhaoxi Zheng (zhaoxi.zheng@unsw.edu.au; 02 9348 2625)
Become a Carer Representative
Carer Representatives are specially trained volunteers who are part of the Carers NSW Carer Representation Program. These carers use their lived experience as family and friend carers to speak up for the needs of all carers in NSW.
Carers NSW Carer Representatives receive support to use and develop their skills in opportunities that interest them, such as:
• participating in consultations and focus groups
• providing feedback on services and resources
• being a part of advisory groups and committees
• sharing their story in publications and videos
Recorded Events
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Share your ideas
Do you have a suggestion for how we could improve the Carer Knowledge Exchange digital platform? Share your ideas via our Feedback Form.
Feedback form
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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.
Add your research
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