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.

Families with complex needs: Models of peer support

Researchers from UNSW want to learn about how particular groups of families support one another. They would like to speak to parents (aged 55 years and over), siblings, or other family members who care for someone with an intellectual disability.

This project involves an interview with a research (approximately 1 hour) at a time and place of your choice. You will be given a $20 gift card for taking part.

If you would like more information or are interested in being part of the study, please contact Leanne Dowse: l.dowse@unsw.edu.au or 02 9385 8090.

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. 

Impact of caring on Australian women over 50 years

This study focuses on the daily life of Australian women aged 50 years and over. It will investigate how women differ in activities that influence health, based on their caring responsibilities. 

To take part, you will be asked to complete a survey, which should take about 20 minutes and is available at this website. If you have any questions or would like a paper version of the survey, please contact Teagan Farrugia Teagan.farrugia@myacu.edu.au or Alana Hewitt on 03 9953 3818.

Have your say about guardianship at the NSW Law Reform Commission public forums

The NSW Law Reform Commission is reviewing the law of adult guardianship and financial management and would like to hear from you. If you are a person who makes decisions for someone else, whether as their guardian or financial manager or as their primary carer, relative or friend, or if you are a person who needs other people to help you make decisions or make decisions for you, the  NSW Law Reform Commission would love to hear your views on how well the system is working and whether it could be improved. 

Public consultations will be held in Sydney on 30 May from 2pm-4pm and in Parramatta on 1 June from 5pm-7pm. 

If you need help to attend or make your views known, NSW Law Reform Commission can help with that. Please also let them know if you have any special requirements, such as an Auslan or other interpreter, a hearing loop, wheelchair access, or other supports. Tea, coffee and light refreshments will be provided.

To register, please email nsw-lrc@justice.nsw.gov.au, call on 8346 1284, or visit the NSW Law Reform website. 

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 edmond.stewart@alzhiemers.org.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.