Projects and publications

Carers NSW supports a range of research projects and publications on the results of completed research projects conducted by or in partnership with Carers NSW.

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.


Carer recognition and care relationships: Developing a framework for carer recognition

  • Are you caring for an older person who is receiving a Home Care Package?
  • Do you feel listened to and respected by the service provider?
  • Are you concerned that the recent changes to Consumer Directed Care with a focus on the individual receiving care might reduce the focus on carers and the care relationship?

This project is being conducted as a research collaboration between Carers NSW and a research team from the University of Wollongong and will investigate the impact that Consumer Directed Care in the Home Care Package program has on carers. The project will develop a Framework for Carer Recognition in the Home Care Packages program.

You are invited to take part in a Carer Action Group (CAG). The CAG will meet face to face in the Carers NSW office in Sydney, approximately 6 times over a period of up to 18 months. The CAG meetings will commence in March 2017 and may take up to two hours each. 

If you are interested in participating but don’t think you can attend all meetings due to your caring responsibilities, it will be possible to link into the CAG meetings via teleconference.

If you would like more information, please contact Ms Cathy Duncan, University of Wollongong, on 0429 018 183 or email at or Tim Broady at Carers NSW on 02 9280 4744 or email at


Cancer Council NSW Palliative Care Call-In

Are you living with an advanced or terminal cancer? Do you have a loved one who has experienced advanced or terminal cancer, or accessed palliative care, in the last 5 years?

This April, Cancer Council NSW is asking people with cancer and their carers and families to call the 13 11 20 Information and Support Service and share their experiences with advanced or terminal cancer.

The information shared will help paint a picture of the difference that palliative care makes, and identify gaps in access to care. It will also help strengthen the information and support services that Cancer Council provides to people with advanced or terminal cancer.

Please call 13 11 20 from 9am-5pm Monday to Friday (8am-6pm on Thursdays) during April.  

All calls are confidential and will be answered by a qualified health professional in the Cancer Counci Information and Support Service.


Study of Dementia and Relationships

Researchers from Alzheimer’s Australia NSW invite people with dementia and their carers to participate in a research project exploring the changes in relationships, both social and intimate that occur following the diagnosis of dementia.This online survey will take about 20 minutes to complete and you are not required to provide any information that can identify you.

A copy of the discussion paper will be available on the Alzheimer’s Australia NSW website in mid-2017.

The survey can be accessed online, but if you have any questions, please contact Ed Stewart at


The City Of Parramatta, Disability Inclusion Action Plan Survey

City Of Parramatta is currently conducting an online survey open to everyone who is interested in seeing the City of Parramatta become a more inclusive city for people with a disability. 

The City Of Parramatta is developing a Disability Inclusion Action Plan (DIAP) which will outline the actions Council will take over the next 4 years to improve accessibility and inclusion for people with a disability in the Parramatta local government area. 

By completing the survey, you can go in to the draw to win 1 of 3 $100 gift vouchers. 

Visit the City of Parramatta website to access the survey or contact Sabrina on 02 9806 5311


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


Effect of the NDIS on Australian carers

Researchers from Southern Cross University are researching the effect that the National Disability Insurance Scheme (NDIS) has on the quality of life and personal wellbeing of Australian carers.

If you care for an individual with a disability, you are invited to take part in a short survey to help understand how the NDIS effects Australian carers. It does not matter if the person you care for is an NDIS participant or not. The survey can be accessed online but if you have any questions, please contact Matthew Snow on


Impact of prenatal testing for Down Syndrome and the views of parents

Researchers from the University of Sydney are seeking parents of children with Down Syndrome to take part in a study into the impact of prenatal testing for Down Syndrome.

Discussion groups will take place in Lidcombe, Camperdown and Richmond. If you are interested in finding out more, contact Dr Andy Smidt on or Dr Rebecca Barton  on


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


Study of carers of people with heart failure

The International Alliance of Carer Organizations (IACO) has received funding from Novartis to conduct a four-nation study of carers of persons with heart failure. The four nations are the United States, Canada, United Kingdom and Australia.

This online survey will take 15 minutes to complete and all responses are confidential and completely secure.

The results of the survey will be published in a report in September 2017 and shared by partner countries to help influence support and programs for carers.

Visit the International Alliance of Carer Organizations website to take the survey.


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.


DIYmodify Beta Testing of App 

Home modifications are changes made to the home to help people to be more independent and safe in their own home and reduce any risk of injury to themselves, their carers and care workers.

DIYmodify is an app in development stage that gives you the information for you to do your own home modification. It explains the choices there are and gives some tips and hacks.

UNSW Australia would like people to “Beta Test” the app before it is launched. Beta Testing would involve looking at the app and providing feedback. Testing will take approximately 15 minutes of your time.

If you are interested and have an iPhone or iPad, please contact Gillian Barlow at and more information and an email link will be sent to you.


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 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.



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Carers NSW acknowledges the Traditional Custodians of the land, Elders past and present and all Aboriginal people.