Projects and publications

Current projects

Carers NSW is currently supporting the following research projects. Please contact the researchers directly if you would like more information about the projects or how you can be involved.

Understanding how regionality and SES intersect with disability in tertiary education

Charles Sturt University, CQUniversity, Fed University, James Cook University and University of Southern Queensland are investigating disability in tertiary education. This project includes regional community people with disability, regional university students with disability, and year 10 & 11 students with disability, to participate in an interview about their opinions and thoughts on attending university. It is open to people who have and have not attended university. 

For more information view the Community Persons information flyer or the Students information flyer or contact Kate Freire on 02 6051 9355 or kfreire@csu.edu.au 

Health And Wellbeing Of Young Carers From Chinese Communities 

Researchers at the University of New South Wales are conducting a study to explore experiences of young carers from Chinese communities, who are caring for parent(s) or relative(s) with mental illnesses, health problems, or disabilities. It will focus on young carers’ physical and mental health, social and relational outcomes, academic and occupational functioning; the roles of their family members; and support and services for young carers.

If you decide to take part in the research study, you will be asked to participate in a face-to-face interview and complete a paper-based questionnaire. It should take approximately 1.5hours to complete.

For more information view the University of New South Wales Research flyer or contact Abner Weng Cheong Poon on w.poon@unsw.edu.au

Are you a stroke survivor or a partner of a stroke survivor?

4 out of 5 Australian stroke survivors do not have the opportunity to discuss sexuality or receive information about sexuality after stroke. Sexuality includes sexual orientation, identity and roles, relationships, intimacy and reproduction. Many stroke survivors and partners of stroke survivors experience difficulty and dissatisfaction with sexuality after stroke. Rehabilitation professionals report a lack of interventions to address these problems.

Sydney University would like to develop an intervention to address sexuality that can be provided to stroke survivors and partners of stroke survivors. If you choose to participate you will be asked to complete 2 surveys, regarding the importance of different topics related to sexuality after stroke.

Your responses will be confidential and you will not be asked to share any information about your own experiences of sexuality. If you would like further information about the study please contact Margaret McGrath on Margaret.mcgrath@sydney.edu.au or by phone on  0466104440  or 02 9351 9213. 

Is a primary carer's wellbeing affected when they look after children with a disability?

This is a Year 12 Research Project about the wellbeing of primary carers who look after children with a disability. For more information, please contact Caitlin Kelleher on caitlin.kelleher@icloud.com or to participate in the online survey, visit the survey website. 

Parental wellbeing in carers of children with a disability

The research team from Southern Cross University is conducting research with carers of children with a disability. The project involves a short survey (less than 15 minutes) about caring experiences and access to services for children.

If you would like more information or would like to complete the survey, please visit Southern Cross University survey website.

Do you care for a person living with mental illness who smokes?

The Tobacco Cessation Team at Sydney Local Health District is running a project to support carers of people living with mental illness to quit smoking. The Team have developed a short survey for carers to determine rates of smoking, attitudes to smoking, and what kind of resources and services would help them. Feedback from this project will help develop resources and training for carers of people living with mental illness who smoke.

After completing the survey, you will have the opportunity to enter a draw to win a $100 gift voucher. For more information, please visit the Sydney Local Health District survey website, or contact Louise Ross 02 9378 1306 or on  louise.ross@sswahs.nsw.gov.au or Joanna Freeman 9378 1309 or on Joanna.freeman@sswahs.nsw.gov.au. 

Wellbeing among parents of children with autism spectrum disorder

Researchers from the University of Adelaide are studying what affects wellbeing among parents of children with ASD – including parenting stress, psychological distress, stigma, social support, and attitudes towards themselves.

Parents and carers of children who have been diagnosed with ASD are invited to complete a survey, which takes about 20 minutes to complete. You will also be given the opportunity to enter a draw to win a Coles/Myer gift card. For more information or to complete the survey, please visit this website.

Attitudes of fathers and mothers of a child with Down Syndrome

A research team from the University of Sydney are looking for parents of a child with Down Syndrome to participate in a discussion group. They would like to ask some questions about testing pregnant women to see if their child has Down Syndrome. Parents can have children of any age, and they are seeking input from both mothers and fathers.

If you are interested in attending a discussion group at Lidcombe, Camperdown, or Richmond, please contact Andy Smidt andy.smidt@sydney.edu.au or Rebecca Barton rebecca.barton@sydney.edu.au. 

Caring for the carer: A support service for family carers looking after persons with age-related macular degeneration

A team from the University of Sydney is seeking carers to participate in a research project focused on improving emotional wellbeing amongst family carers of people with age-related macular degeneration (AMD). The team is interested in empowering carers by helping them make the most of available sources of social and financial support, and improving their adaptive and coping strategies. 

The 10 week program involves: 

• Mail-delivered cognitive behavioural therapy – this is a type of psychotherapy that involves the use of practical self-help strategies, which will help you to better adapt and cope with your caring duties
• Telephone-delivered group counselling sessions conducted by Carers NSW, allowing carers to explore the impacts of caring and share their experience.
• Education on available community services/resources, financial benefits, and respite services.

If you participate in this study, you will be asked to complete an assessment package that will take about 45 minutes to complete. This will involve answering questions regarding your caring duties, general health status, and quality of life. You will then be randomly assigned to one of two groups to either receive the support service designed to improve psychological adjustment and adaptive coping skills, or a control group which does not require program participation. 

This study is being conducted by Associate Professor Bamini Gopinath in the Centre for Vision Research, Westmead Institute, University of Sydney. If you would like to participate in the study or find out more at any stage, please feel free to contact Associate Professor Bamini Gopinath on 02 8627 3368 or bamini.gopinath@sydney.edu.au

Stress reduction treatment for parents of children with an intellectual disability

The Graduate School of Health at University of Technology Sydney is inviting parents whose children have an intellectual disability to participate in a brief survey to see whether or not they have experienced any barriers to accessing mental health services. 

The survey can be accessed online and responses are completely anonymous. For more information, email mhitpsych@gmail.com

Parenting a child with a developmental disability

Researchers at the University of Newcastle are conducting a survey exploring the experience of being a parent of a child with a developmental disability. In particular, they are interested in how cultural factors may or may not affect this experience. 

If you are interested in participating, please visit The University of Newcastle website where you can read more about the study before deciding if you would like to participate. 

Young stroke survivors and carers

The Florey Institute of Neuroscience and Mental Health has established a database of people who are interested in participating in research projects. These research projects inform treatments, therapy, policies, and support programs, with the aim of improving recovery outcomes.

Young stroke survivors and carers of young survivors are invited to express their interest in future research participation. If you would like to be contacted for the possibility of research participation, please complete this Expression of Interest form and return it to the contact details on the form.

The Brain and Mind Research Institute carries out studies focused on the diagnosis and treatment of Autism Spectrum Disorders. These studies involve a variety of activities including diagnostic assessments, group and individual therapy, and medical treatments like Oxytocin. If you are interested in learning more or participating in a study, please visit the website and consider filling in the survey to become part of the research register, so you can be contacted when a study is being conducted that you might be suitable for.

Completed projects

The following publications are the results of completed research projects conducted by or in partnership with Carers NSW.

For more information about any of these publications, please contact the Research Team on research@carersnsw.org.au or 02 9280 4744.

Research snapshots

The monthly Research Snapshot provides an overview of recent research publications related to the work of Carers NSW.

Click here to read the latest Research Snapshot.

Click here to view the archive.