Research is central to how we understand and interpret the issues and concerns of carers.

We actively support research projects as a way of creating better results for all caring families.

We are committed to furthering our understanding of their needs to make a difference in their lives.

Below you can find some of our current research projects. If you are interested in participating in any of them, you can contact the researchers directly.

Violence Against Women Across the Lifespan

Exploring women's experiences of family and domestic violence over the lifespan.

Curtin University is conducting research that considers violence against women across the entire lifespan, exploring whether experiences and responses differ across the lifespan.

They are looking for practitioners and women with lived experience to participate in online surveys, which should take no longer than half an hour to an hour.

The practitioner survey can be accessed here

The lived experience survey can be accessed here

If you have any questions about the project or would like any further information, please contact Amy Warren at amy.l.warren@postgrad.curtin.edu.au or Dr Barbara Blundell at barbara.blundell@curtin.edu.au.

Mind the Gap! Respite care and transition to permanent residential care

Are you interested in designing a new approach to care for people with a lived experience of dementia? Be part of exciting new changes at Bolton Clarke

Taking part in this study will give you the chance to:
• Describe what is/might be important to you related to the journey through respite care and
transition into permanent residential care
• Provide feedback on program ‘prototypes’ and experience the changes being implemented

What would it involve?
• Take part in two meetings to discuss what is/might be important to you regarding
respite/transition care
• Take part in another four meetings to provide feedback on the ‘prototype’ programs
• Each meeting would take approximately 1.5 hours, either as a one to one conversation
or in a group if you prefer
• The meetings would take place at a convenient time and location for you

For further information:
Claudia Meyer
Bolton Clarke Research Institute
973 Nepean Hwy, Bentleigh 3204
Phone: 0427 894 458
Email: cmeyer@boltonclarke.com.au

Funded by Dementia Australia

Getting Home Safely with Dementia

People with dementia are at greater risk of getting lost and experiencing devastating outcomes as a result. This risk is exacerbated by confusion about how to report a missing person with dementia to Police which can delay search efforts. Queensland University of Technology is leading research to help address this. They are currently looking for people to participate in an online public consultation forum.

Before attending this online forum, you will complete five short online learning modules to provide you with baseline knowledge related to the topic of interest.

You will then join your chosen public consultation group to discuss strategies to develop national recommendations for reporting a missing person with dementia in Australia.

To be eligible you need to be aged 18 years or older, read and understand English and have access to an internet connected device with a camera.

They are looking for people who are either:

  • Professional carers experienced in caring for people with dementia (e.g. Registered nurse, enrolled nurse, medical officer, allied health professional);
  • Family carers of a person with dementia;
  • Members of the emergency services (e.g. police, ambulance, fire brigade, SES); or
  • Members of the general public.

Participation involves:

  • completing 75 minutes of online education before your selected discussion session
  • being available for two online discussion sessions (10-11:30am and 1 to 2:30pm) on either Tuesday 24 November 2020 or Tuesday 1 December 2020, and
  • completing an online survey.

Improving hospital discharge for carers and older adults

Monash University is seeking 25 carers of older adults living in the community to take part in an interview for a research project. The research project aims to identify carers’ experiences and needs in supporting older adults who are discharged from hospital to home.

The research interview will take place by telephone and it will take about one hour. To take part, carers will:

  • Be supporting an older adult living in the community with chronic health difficulties, and
  • Have experience with discharge from hospital to home following admission for a physical health problem of the older adult that they support

All carers are very welcome including those from diverse cultural backgrounds, diverse sexual orientation, and diverse locations such as rural and regional areas. Carers who have recently supported an older adult (within the past 12 months) are also eligible.

Please contact Jacqui Allen on 0427 940 794 or by email Jacqui.allen@monash.edu for more information and details about participating.

Out with Cancer: LGBTQI+ experiences of cancer survivorship and care

Sexual and gender minorities, including those who are lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI+), represent an “ignored epidemic” and a “growing and medically underserved population” in cancer care.

This interdisciplinary project will address this gap in research through investigating the following aims to:

1. Identify and understand the complex intersection of gender, sexual identity, age, and other categories of difference, in relation to the cancer survivorship and care experiences of LGBTQI+ individuals.

2. Ascertain barriers and facilitators to the delivery of culturally competent cancer communication and care to LGBTQI+ patients through an audit of guidelines and resources, and via the perspective of service providers.

3. Synthesise and implement these findings into tailored support materials for LGBTQI+ survivors and carers, and Australian LGBTQI+ cancer best practice and policy recommendations

To find out more or take part in the study visit www.westernsydney.edu.au/outwithcancer

The experiences of carers and how this fits into a new mental health framework known as the Power Threat Meaning Framework.

We are recruiting adults who are currently or have previously cared for an individual with mental health difficulties to participate in this study. This study aims to understand your experience as a caregiver through an alternative framework for understanding mental health, known as the Power Threat Meaning Framework.

To participate in this study you need to:

Be aged 18 years or older
Self-identify as an informal caregiver who has previously or is currently
caring for an individual with mental health difficulties
Have sufficient English language skills to participate in an interview
without an interpreter
Participation involves a thirty minute to one-hour interview. Due to the recentchanges surrounding COVID-19, interviews will be offered via Zoom video conference (as face-to-face interviews are not possible). At the interview we will ask you questions about your experiences as a caregiver specifically in the context of power, threat, and meaning. A copy of the questions will be provided to you in advance, so you can consider if you would like to participate. The interviews will be audio-recorded for the purpose of transcription. You will have the
opportunity to review the preliminary themes gathered from the interview and provide feedback on these.

Participation is voluntary and all participants will be informed of the results of the study.

If you would like to know more, please contact Jessica on 250914@my.acap.edu.au for a copy of the Participant Information Sheet, interview protocol, demographic sheet and Consent Form.

Aged Care Technology Needs Assessment

The COVID-19 pandemic has highlighted the need for better communication technologies across all age groups and it is particularly important for many older people who live in aged care separated from their families and friends.

A new study launched by the Menzies Health Institute Queensland Australian Aged Care Technologies Collaborative aims to bridge this gap by increasing the efficiency, effectiveness and quality of care of older adults in ageing services through technology.

Professor Wendy Moyle, Director of Griffith University’s Healthcare Practice and Survivorship Program, says aged care facility providers and older people don’t really know what they need in terms of technology, what’s available and what might help them.

“We are conducting four surveys about technological needs in aged care – from the perspective of people over 65, carers, industry providers and health professionals,’’ she said.

“We want to know what their personal needs are and the needs of their community in terms of technology. The results from the data will help develop a website that will help people and inform them of the choices available.”

She said one of the main problems with older people and technology was the purchase of items such as phones, tablets or computers that they weren’t able to operate or did not fix their immediate problem.

“So we end up with a lot of discarded technology.

“We also want to know how technology will help with mental health and active health, and find out what people currently use and what they would like to see in the future that may assist them.

“For example, nursing homes could benefit from the implementation of video-conferencing facilities to help connect residents with their families and friends if visiting in person is not possible due to COVID-19. It’s all about future proofing.”

Patient Reported Outcomes: the lived experience of rehabilitation patients

Want to share your experiences with rehabilitation? Griffith University researchers are recruiting adults 18 years and over who have undertaken rehabilitation in the following subacute or specialist rehabilitation settings, during the last 2 years: stroke; major trauma/burns; amputation; geriatrics, acquired brain injury, progressive neurological conditions, spinal cord injury, deconditioning post-acute illness; community-based programs for chronic lung and cardiac disease (cardiac rehabilitation and heart failure rehabilitation), pain, and chronic musculoskeletal conditions.

The results of the study will inform improvements in health care services to be more patient-centered in the way that outcomes of treatment are reported and used.

You will be asked to take part in an interview over the phone about your experiences of rehabilitation that will take approximately 30 minutes to complete.

Interviews will be held in May- June 2020 over the telephone.

If you are interested to participate or would like to know more about the study please contact Amandine Barnett, project officer, by email (researchoutcomes@griffith.edu.au) or phone 07 3735 9006.

Work-related wellbeing of aged care workers

Researchers from Central Queensland University are conducting a study focused on the work-related wellbeing of employed Personal Care Attendants/ Assistants (PCAs) who work in the aged care sector, and are aged 18 years or over.

The research aims to highlight the contribution of these important workers, inform employers and promote change within organisations to improve workplace procedures so PCAs are better resourced and supported in their role.

For more information visit the dedicated Facebook page or click the survey link.

The survey will take approximately 15 minutes to complete.

This project has been approved by the CQUniversity Human Research Ethics Committee, protocol number:

Caring for an elderly spouse/family member

Researchers from the University of Southern Queensland are seeking carers of an elderly spouse/family member from Brisbane (or other urban area), or Toowoomba (or other rural areas) to take part in a research project on values associated with caring for elderly spouse/family members including those with Dementia.

Interviews will take approximately one hour and can be conducted via Skype, Zoom or Facetime.

Contact Haylee (Brisbane/urban area) on 0432 243 668 or email u1002711@umail.usq.edu.au.

Contact Rosemary (Toowoomba/rural area) on 0437 327 600 or email u1116769@umail.usq.edu.au.

USQ Ethics Approval: H18REA256 (v2)

“Cool for School”: Can a parent-group help to reduce anxiety in children with autism

Research suggests that children with autism may begin to experience the early signs of anxiety before they even start school.

The Autism Centre of Excellence at Griffith University is conducting a new study to determine if parent’s intervention is effective in reducing the anxiety experienced by children with autism.

Griffith University is currently seeking parents of children with a diagnosis of autism who will start school in 2021 in South East Queensland.

Participating parents will take part in a trial of a six-session intervention that has been specifically designed to prevent or reduce anxiety in young children with autism.

Sessions will be run during school Terms (Term 1, 2 and 3) at Logan, Mount Gravatt and South Bank.

These will be led by an experienced qualified Clinical Psychologist (A/Prof Dawn Adams) and are free for parents.

The results of this study will provide an initial indication as to whether this intervention helps to reduce the level of anxiety experienced by children with autism both immediately and after they start school.

Research – Caring for a person with dementia

Researchers from Griffith University are looking for unpaid male carers over the age of 50, who live in South East Queensland to participate in a study to explore how men experience this role and how it impact their lives.

You will be asked to participate in a 45 to 60 minute interview describing your experiences as
a caregiver through a set of several questions.

Participants will be given a $40 Coles/Myer gift card on completion of the interview.

ENACT: a trial of an early intervention for infants at risk of Autism Spectrum Disorder

Researchers at The University of Queensland have developed an early intervention approach for infants at risk of Autism Spectrum Disorder (ASD) – that is, for infants with a first-degree relative (parent or sibling) with ASD.

The early intervention program, ENACT, is delivered online through an e-course, “ENACT 101”, combined with online clinical consultations to assist parents to tailor the intervention to best meet their own individual needs and the needs of their baby.

ENACT incorporates early intervention approaches, targeting social reciprocity through everyday parent-child interactions, as well as strategies to support parental mental health and coping with parenting challenges such as infant sleep.

To participate in this study you need to be currently pregnant with a child who has a first-degree relative (that is, a biological mother, father, sister or brother) who has been diagnosed with an Autism Spectrum Disorder.

Melatonin for insomnia in Parkinson's disease

This study brings together a team of researchers from The University of Queensland, Wesley Hospital and St Andrew’s War Memorial Hospital. It aims to find out whether melatonin can assist people with Parkinson’s Disease to get better sleep.

The study involves two phases:

  • Phase 1 involves answering a questionnaire, education about treatment, and recording sleeping patterns in a sleep diary for two weeks.
  • Phase 2 involves testing medication effectiveness for 12 weeks. During this period, you will be given both melatonin or a placebo, in blocks of two weeks each, and in a random order. You will also need to keep a sleep diary and complete some questionnaires.

Emotional and behavioural functioning in adolescents with Autism Spectrum Disorder (ASD)

Researchers from Queensland University of Technology (QUT) are conducting a study to learn more about factors that may ultimately impact the emotional and behavioural functioning of adolescents diagnosed with ASD, from the perspective of the adolescents and their parent/caregivers.

The research team is looking for adolescents diagnosed with ASD and one of their parents/caregivers.
Adolescents must be in grades 7 to 9, have one or more siblings, and an IQ of Low Average or above.
All participants will also need to have access to either a phone or a computer with internet.

Adolescents who have been diagnosed with intellectual disability unfortunately will not be able to participate due to participation requirements and the scope of this study. Additionally, adolescents who are unaware of their ASD diagnosis will not be able to participate.

Contact Biyanka Komandur at biyanka.komandur@hdr.qut.edu.au