Have your say

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Have Your Say is Carers Victoria’s online hub to raise issues that are important to you in your caring role.

It’s a place where you can participate in surveys and provide feedback on research and matters impacting carers. We encourage you to take part in the opportunities below. Insights and feedback gathered will help build an evidence base for better support for carers, inform policy and decision making, and ultimately deliver better outcomes for the carer community.

 

Have your say on the following:

Are you a carer, care partner or supporter of an LGBTQ+ person living with dementia?

If so, you’re invited to share your experiences!

Dr Louisa Smith from Deakin University is leading a research project to improve care for LGBTQ+ people living with dementia. 

Participation involves a two-hour online or in-person interview, with art materials provided to help share your story. A $100 gift voucher will be given as thanks.

To learn more, email louisa.smith@deakin.edu.au or sue.taylor@deakin.edu.au

About the study

Researchers from UNSW Sydney, the University of Melbourne and Deakin University, in partnership with Carers Vic, are conducting a major three-year research study to improve understanding of transitions and pathways out of caring.

If you have had thoughts about how your caring may end in the future or are currently experiencing a transition out of your caring role*, the researchers would like to hear from you.

Participation involves an in-depth interview with one of the research team members, either in person or via online video platform. Participants will receive a $30 gift card for their time.

If you are interested, please contact the research team for further information: Professor Emma Kirby (emma.kirby@unsw.edu.au; 02 9385 9065); Zhaoxi Zheng (zhaoxi.zheng@unsw.edu.au; 02 9348 2625)

*Recruitment of former carers will commence later in 2025. 

If you live in Australia, are over 18, and provide unpaid care for an adult with a musculoskeletal condition (such as arthritis, osteoporosis, back or neck pain, fibromyalgia or similar conditions), we would love to hear from you!
Researchers at Deakin University are exploring what matters most to carers of people with musculoskeletal conditions. This project will help develop a future survey to better recognise and value carers’ contributions.

Study details

  • Participation involves either a one-on-one Zoom interview (~60 minutes) or a small online focus group (60–90 minutes).
  • Sessions are audio-recorded. You may use a first name or pseudonym.

Recruitment closes: 30 November 2025

For more information or to express your interest, please follow this link: https://redcap.deakin.edu.au/surveys/?s=KTKPLT9KE3ED4X9N

You can also contact the Research Team at s224284089@deakin.edu.au
This study has been approved by Deakin University’s Human Research Ethics Committee [2025/HE000333].

Mental Health Victoria is inviting input into the 2025 Victorian Mental Health State of the Sector Research Project.

This landmark initiative will capture the perspectives of service providers, the mental health workforce, and Victorian community to describe the current state of mental health in Victoria.

Your views and experience matter. There are 3 ways to participate:

  1. The Victorian Mental Health Sector Survey is a targeted survey distributed to Victorian public, private, and community mental health providers.
  2. The Victorian Mental Health Community Survey is open to all Victorians and does not require having a personal lived experience of mental ill health or the mental health system. The insights from this survey will support a greater understanding of community attitudes, health seeking preferences, and opportunities for improving mental health outcomes.
  3. The Victorian Mental Health Workforce Survey is open to
    • mental health professionals (of any discipline) employed in connection with theprovision of mental health treatment, care and support (directly or indirectly), and
    • practitioners providing mental health treatment, care or support as a discrete function within a broader role (e.g. GP).

Contributions through this survey will generate insights into the experiences of the workforce, the challenges and opportunities to providing high quality mental health care and shaping priorities for action.

These consultations will close on October 20, 2025.

More information about this project is available via the Mental Health Victoria website.

This survey is part of a collaborative research project led by the Care Economy Research Institute (CERI) at La Trobe University, in partnership with The Asia Foundation Malaysia, Australia, and MyAgeing at University Putra Malaysia (UPM). The study explores how home-based care is currently provided in Malaysia and Australia, in response to changing demographics and increasing care needs.

We invite you to take part in a 10-20 minute survey to share your experiences with home-based care. For this study, home-based care refers to support provided to individuals in their own homes. This may include services delivered by nurses, allied health professionals (e.g. physiotherapists, occupational therapists, podiatrists, allied health assistants), home care workers (e.g. personal care and meals), and domestic assistants (e.g. cleaning). It also includes people providing support outside the home, such as transport to appointments, help with shopping, or social activities like coffee clubs. The care provided could be formal (paid) or informal (unpaid).

The survey focuses on care for older adults-defined as those aged 65 and over, or 55 and over for Aboriginal and Torres Strait Islander peoples.

If you are 18 years of age or older and are either a formal care provider (paid) or an informal caregiver (unpaid) or you are an older adult who is receiving informal or formal care, you are eligible to participate in this survey. 

Your participation is voluntary, and all responses are anonymous and confidential. The data collected will be analysed and used to identify gaps in the home-based care system, helping to inform future research and policy reforms. A summary of the findings will be shared publicly on the La Trobe University website, presented at conferences, and may be published in peer-reviewed journals.

While we do not anticipate emotional distress from participating, we acknowledge that some questions may be sensitive. If you feel affected, please seek support from your usual networks or contact the project manager, Jennifer Boak, at j.boak@latrobe.edu.au.

To participate in the survey click here. Download the research flyer here Home-based care experience survey.

Communication Connect: Now Recruiting Carers

Communication Connect is a website developed as part of a government-funded research trial led by La Trobe University. It was co-designed with carers, people living with communication disability, health professionals, and researchers. 

The website includes:

  • A self-paced e-Learning program for carers
  • A Carer Needs Checklist that points you to resources based on your needs

You can participate in our research if you:

  1. Care for someone with a communication disability after stroke or brain injury, and
  2. Live in the Loddon-Mallee region of Victoria, Melbourne and surrounds, or Sydney and surrounds

Contact Communication Connect for more information:
Phone: (03) 9479 5080
Email: communication.connect@latrobe.edu.au

Watch the video: Communication Connect: The Carer Portal

Download recruitment flyer here.

If you live in Victoria, are over 18, and have supported an adult facing cancer within in the last 2 years, we would love to hear from you!

The Cancer Carer Hub at Deakin University is researching an online mindfulness program (Carer_MindOnLine) to help reduce stress and manage thoughts and feelings.

Study details

Program: A 9-week mindfulness course with short videos and activities.

Participation: Eligible participants will complete a short survey and be assigned to either the immediate access group or a waitlist group (program access after 9 weeks). Both groups will complete a short survey afterwards.

For more information and to access the program click here.

You can also contact the Research Team at carermindonline@deakin.edu.au   

The study has been approved by Deakin University's Research Ethics committee (2023-358). 

We are a team of dancers, psychologists, and researchers committed to making dance more inclusive and accessible for Autistic children.

Monash and Deakin Universities are running a research program to explore how dance can benefit Autistic children and their families.

Families in Victoria, Australia with children who:

  • Are 7-12 years old
  • Have a formal Autism diagnosis (without intellectual disability)
  • Are not currently enrolled in another dance program

Dance for 9 weeks! Your child will join fun and inclusive weekly dance class. The classes will have a contemporary
dance focus and be led by dance and disability specialists at Deakin University Dance Studios in Burwood.


👉 Your child will attend 2 face-to-face sessions to complete thinking and movement tasks.
👉 You will complete 3 online surveys about your child’s abilities and experience

Register your interest here.

A new research study developed by and for members of LGBTQI+ communities aims to improve support for gender and sexuality diverse people living with dementia.

The study is searching for research participants who:

  • Are gender and sexuality diverse and living with dementia
  • Are living in a private dwelling or in residential aged care throughout Australia

All participants do not need to use speech to communicate to be involved, as researchers will use creative approaches to support their involvement.

During the study, researchers will visit each participant four times and participants will engage in their normal daily activities. Participants will receive a $50 voucher per visit. With their consent, the researchers would also like to talk to people who know the person living with dementia.

If you would like to participate or if you know someone who may be suitable, please contact Dr Louisa Smith on 03 9246 8364 or email louisa.smith@deakin.edu.au.

Most of the care and support provided for people living with dementia is provided by family and friends and takes place away from healthcare services. The impact of supporting a person with dementia is significant - it requires substantial commitment of time over months to years, and it can be emotionally, physically and socially taxing. The aim of this study is to better understand the carer experience from a negative and positive stance.
This study has been approved by the Victoria University Human Research Ethics Committee (HRE24-049)

Participation

Participants must be over 18 years of age, living in Australia, and currently providing care to a family member or friend living with dementia.  Participation is the online completion of a survey.  You will be asked to complete a 30-minute survey that covers several topics related to caring for a person with dementia. You will be asked questions about your knowledge of dementia, your response to changed behaviours, your experience of dementia-related stigma, the impact of caring on your life, your mood, and the positive aspects of caring. 
 

Participant duration 30 minutes
Available to people living in All states and territories, Online
Study begins Wednesday, 3 July 2024
Study ends Tuesday, 30 June 2026

Contact

To find out more about this study, contact: Dr Monika Coceski

Participate in a survey about resources to support family/carers, and older adults to prepare for life at home after hospital discharge 

Greek/Italian/Chinese (Cantonese and Mandarin speaking) Australian family/unpaid carers and older adults 

Monash University is seeking family/unpaid carers of older adults and older adults living in the community who identify as Greek/Italian/Chinese (Cantonese and Mandarin speaking) Australian to review One patient/carer resource of their choice and then participate in a survey. The survey aims to get feedback that the researchers can use to improve the resource. Eligible people are Greek/Italian/Chinese (Cantonese and Mandarin speaking) Australians: 

  • Family and unpaid carers in the community 
  • Aged 18 years or more 
  • Supporting an older adult living at home with chronic health difficulties 
  • With experience supporting (within the last 2 years) an older adult during discharge from hospital to home for a physical health problem  
  • Older adults 
  • Aged 60 years or more 
  • Have experience (within the last 2 years) of discharge from hospital to home following admission for a physical health problem 

Click on the link below to access the resource and survey. This one link provides access for all languages – English, Greek, Italian, Chinese (Traditional and Simplified)

https://monash.az1.qualtrics.com/jfe/form/SV_6fgdJgdCowI0ha6  

  • Printed versions of booklets and surveys with reply paid envelopes are available, please contact Yaping Zhong on 0405 396 468 or by email yaping.zhong1@monash.edu 

For more information and questions about participating, please contact Yaping Zhong on 0405 396 468 or by email yaping.zhong1@monash.edu

Researchers at NARI and Austin Health are currently undertaking a research project called the “3C Program”. The program aims to improve health outcomes for individuals accessing respite care. The 3C team are seeking participants for this research project, who are: older adults entering respite care at a Melbourne based residential aged care facility and the day-to-day carers of these people. Carers and respite recipients would participate in the program as a pair.  

The program involves a 1-2 hour visit at your home or at another location that is private and safe (like an aged care home). This visit will occur before you enter respite care or as close as possible to the beginning of your respite stay. A registered nurse would carry out this visit and undertake the following with the two of you (respite recipient and carer):

  • A comprehensive health assessment involving a clinical examination and medical assessment tools.
  • Development of a health summary document using the data from the health assessment.
  • Filming of some videos that demonstrate you going about your day-to-day life. We will ask your permission to record you on camera carrying out some tasks.

The 3C Program team will then pass on this information and content to respite care staff at the aged care facility you will be admitted too. It is hoped that this information and content will help staff provide better quality respite care to participants. Later, after your respite stay, the 3C team may also ask you to help them evaluate your experience of respite care and the 3C Program. They may also conduct some follow up assessments to see how you are going following your respite stay.

If you are interested in helping out and would like more information, please contact NARI Research Assistant Liam Borelli-Millott at L.Borelli-Millott@nari.edu.au, or call him on 0487937265 (Available: 9am-5pm, Mon-Wed). You may also contact the project manager, Dr. Christa Dang at C.Dang@nari.edu.au.

Your participation would be greatly appreciated by the 3C team.

There’s no remuneration and recruitment period is 12 months.

There are significant changes coming to how home care is offered and delivered in Australia from the 1st of July this year. The Catalyst Report is seeking input from those already using home care and their family members. Also, those who will consider this service in the future for themselves or a family member. 
 
The survey takes 10-15 minutes. Most questions are optional and can be skipped. There are no right or wrong answers and your feedback will remain confidential. 
 
Respondents providing useful insights will be selected to receive one of twenty $150 gift cards as a thank you for participating. 
 
We really appreciate your thoughts and they will help home care providers do a better job now and in the future. 

Click here to take the survey.

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