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.

Making Claiming Carer Payments Faster and Smoother

The Department of Social Services is looking to Improve the Assessment Process for Carer Payment and Carer Allowance and they need carers to have their say on the new process.

If you are claiming or have claimed Carer Payment or Carer Allowance in the last 3 months, you can help by participating in the field test.
For more information and to complete field test, visit the Department of Social Services website

Mental Health Carers’ Relationship Experiences and Coping Strategies

Researchers at the University of Wollongong are studying carer’s experiences within their relationships and coping styles.  As a participant in this study, you would be asked to: complete an online survey containing a series of measures that contain questions regarding your perception of the nature of your relationships and coping styles.

If you care for someone with a mental illness and would like to participate in this project, please fill out this 20 minute survey. See flyer for more information, or contact Elly Bailey on 4221 5605 or elb997@uowmail.edu.au

Siblings of children with ASD

This project aims to investigate the possible effects of having a sibling with Autism Spectrum Disorder, focusing on whether siblings of children with Autism, when compared to siblings of typically developing children, tend to have negative emotionality, lower self-esteem, and lower academic success.

Typically developing siblings and their parents are invited to participate in this research:

For more information, please contact Emily Habelrih: emily-anne.habelrih@student.bond.edu.au

Caring for a person with bipolar disorder and alcohol or other drug problems

This study aims to better understand the experience and needs of family or friends who care for a loved one with both bipolar disorder and alcohol or other drug problems. The ultimate aim is to enhance the wellbeing and quality of life of carers when their loved one has complex mental health problems.

If you are a family member, partner or friend over the age of 21 who cares for an adult diagnosed with both bipolar and substance use disorder, you are invited to participate! The research involves an interview about your experience and thoughts about caring. Participants will be offered a $30 AUD Coles/Myers voucher as a token of appreciation.

For more information and to participate, see this link or contact Zoe Gruneska (gruneski@tpg.com.au; 0403439421)

Rural children with an intellectual disability

Researchers at Sydney University are looking at the experiences of parents and carers of children with an intellectual disability to determine the characteristics of disability services in rural areas and the future needs of these families.

They are looking for parents and carers of children with an intellectual disability aged 5-17 years who have lived in a regional, rural, or remote area for at least 5 years. Participation involves a 60 minute phone call or visit from the researcher.

If you are interested in participating or would like to know more about the study, please contact Edward Johnson (ejoh6117@uni.sydney.edu.au; 0424 530 256)

Mental health services for people with an intellectual disability

Researchers at UNSW Australia are looking at whether people with an intellectual disability and mental health issue have difficulties accessing appropriate services. They are running a series of focus groups with carers of people with an intellectual disability to investigate their experiences.

If you care for someone who has an intellectual disability and would like to take part in the study, please contact Erin Whittle (e.whittle@unsw.edu.au; 02 9385 2208).

Adult life for people with Autism Spectrum Conditions

Researchers at UNSW Australia and Autism CRC want to learn about life in adulthood for people with Autism Spectrum Conditions.

They are looking for adults over the age of 25 who have autism, carers or family members of an adult over the age of 25 with autism. To take part, you will be asked to complete a questionnaire (either online or on paper) about many different aspects of life.

If you would like more information or are interested in being part of the study please contact Kitty Foley or Jane Hwang (autismcrc@unsw.edu.au; 02 385 0620 / 02 9385 0623).

Air travel with people with dementia

Researchers from Queensland University of Technology are researching the experiences of people who accompany people with dementia when travelling by air.

Carers of people with dementia are invited to complete an online survey that will take around 20-30 minutes. The survey will ask about your experiences of flying with a person with dementia, and if you have any suggestions for airline staff.

For more information and to access the survey, visit this website.

Resilience in families of children with a developmental disorder

This project is looking at factors that contribute to positive family experiences in families of children who have been diagnosed with a developmental disorder (e.g., autism spectrum disorder, ADHD, learning disorders, motor disorders, etc.).

If you care for a child with any developmental disorder, you are invited to complete an online survey, which will take approximately 20 minutes to complete. You can access the survey here.

If you have any questions, please contact Dr Lynn Ward (08 8313 3182; lynn.ward@adelaide.edu.au) or Dr Diana Dorstyn (08 9313 0649; dana.dorstyn@adelaide.edu.au).

Choice to stay at home and end of life care for people with dementia

Researchers from the University of Sydney and Southern Cross University would like your feedback about end of life care issues for relatives or friends with dementia. The research team is seeking participants who have experienced the loss of a family member with dementia in the last two years.

Participation involves completing an anonymous online survey, which takes about 30 minutes to complete.

If you are interested in participating, more information is available on this website. Alternatively, contact Alexandra Young (alexandra.young@sydney.edu.au; 02 9114 4084).

The experience of parenting a child with a mental health disorder

Researchers at the University of Newcastle are conducting a study on the real world experience of parenting a child with a mental disorder. In order to learn about parents’ experiences in their own words, they are conducting interviews with parents of children diagnosed with mental health disorders. Interviews will be one-on-one with one of the researchers, will last about 1 to 1.5 hours, and can be conducted in person, on the phone, or via Skype. Participants will be given a $20 Coles Myer gift card to thank them for their time.

If you would like to participate, or would like any more information, please contact Anthony Lamotte (Anthony.Lamotte@uon.edu.au; 02 4921 6757).

Understanding the needs of older LGBTI carers

The Australian Research Centre in Sex, Health and Society and Carers Australia are partnering to explore the experiences of older LGBTI carers and the carers of older LGBTI Australians (55 years old or more). Participants will be invited to complete an online survey and a confidential interview.

You are invited to participate if you are:

  • An older LGBTI carer or the carer of an older LGBTI person
  • A current Australian resident
  • Currently in a carer role or have been in the last two years.

To complete the survey, please visit this website. For more information, please contact Dr Catherine Barrett (c.barrett@latrobe.edu.au; 03 9479 8702) or Carolyn Whyte (c.whyte@latrobe.edu.au; 03 9479 8739).

Carers’ perspectives on complex service systems

Are you the parent of a son or daughter affected by a genetic condition? Researchers from the University of Sydney are interested in hearing about the relationships you have with many services you may be in contact with (e.g., health, education, disability, finance, employment).

If you are interested in sharing your views, please contact Pam Joseph (0435 532 074; pjos3628@uni.sydney.edu.au) for more information.

Community ageing in place

This study aims to improve the independence of older Australians at home. You are invited to participate if you:

  • Are aged 65 years or older
  • Have a diagnosis of mild cognitive impairment or early stage dementia
  • Live within 25km of Sydney CBD

For more information, please contact Sydney Nursing School (nursing.research@sydney.edu.au, 02 9114 4084) or see this flyer.

Chronic pain

Relationships Australia and the Australian Catholic University are looking at how chronic pain affects relationships and what can be done in terms of support.

If you or your partner experience chronic pain, you are invited to complete an online survey, which will take about 3 minutes to complete. You may then be invited to complete a second survey, which takes about 20 minutes. For more information, visit the website.

Autism Clinic for Translational Research Register

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.

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