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Research

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.

Caring for an adult family member with a chronic condition

Charles Darwin University is conducting the project research ‘Caring for an adult family member with a chronic condition' and they are currently seeking for participants.

Are you caring for an adult family member who is living with a chronic condition?

Do you have an immigrant background?

Are you and the person you care for living in Australia?

Contact Lilly Tsai on 0430 171 735 or email: lily.tsai@students.cdu.edu.au

Smart Home Support for Stroke Caregiving

We understand the challenges caregivers face when caring for a person with a stroke, and we would like to support you in your everyday life.

In the past, we have conducted an online survey to identify the needs of stroke caregivers like you, which we have used to develop a mobile web app.

Currently, we would like your assistance in evaluating the app to inform engineers and developers regarding your technological preferences and the best methods to support you in your daily activities.

What is the impact of communication changes on the spousal relationships of persons with dementia?

Australian Catholic University is conducting The Impact of Dementia on Relationships research.

The study explores how spouses of people with dementia experience changes in their relationship and communication with their partner.

Participants must:

– Be the spouse of someone with a diagnosis of dementia

– Be the primary carer for their spouse with dementia

– Have known their spouse prior to the onset of dementia

As a participant of this study, you will take part in a one-hour individual interview.

For more information click on the link below or contact Dr Erin Conway at erin.conway@acu.edu.au

FoCCuS4HEART project

Researchers from the University of Newcastle are conducting the FoCCuS4HEART (Female Carers Co-produce Support 4 Heart and Emotional health to Address Risk factors) project, which seeks to work with informal female carers of stroke survivors to develop strategies and tools to support carers to self-manage their emotional and physical health.

If you’re a woman who provides care or has provided care to someone who has had a stroke, you can help by sharing your experiences in the survey below.

For more information contact the research team at FoCCuS4HEARTproject@newcastle.edu.au or Dr Alexandra Denham at Alexandra.Denham@newcastle.edu.au or on phone number (02) 4055 3232

Social Identification, Therapeutic Alliance and Outcomes: The mechanisms of social identification in group and individual therapy for people experiencing chronic mental illness.

The School of Psychology from the University of Queensland is working on a research project that aims to provide a greater understanding of how therapy can produce meaningful change for clients.

Research shows that numerous factors can influence a person’s response to therapy; some of which are indirect and not specific to the content of the treatment itself.

This study examines these indirect influences further, focuses on how feeling connected and aligned with your therapist or with others in a therapy group can influence how well people respond to the treatment they receive.

To examine this question, they have created an anonymous online survey that can be completed by anyone who is in treatment or completed treatment in the last three months.

The implications of this research can provide valuable insights to lead further study and effectively train therapists and clinicians to reduce rates of drop-out and improve treatment outcomes for clients of therapy.

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

Recent research suggests that children with autism may begin to experience the early signs of anxiety before they even start school. We know that in children without autism, there are some parent interventions which can help prevent anxiety from developing, but these have not yet been fully tested for children with autism.

Griffith University wants to trial a new intervention with a group of parents of children with autism to see whether this intervention is able to reduce or prevent their children experiencing anxiety and see if these results are maintained over time.

This intervention has been piloted with a small group of parents of young children with autism (4- to 6-years-old). These parents provided positive feedback on the intervention during the group sessions.

Given this feedback, they would now like to test the intervention with the next step in the research process.

To do this, they are seeking two groups of parents: one that will attend the parent sessions, and one group that will not – we can then compare the children’s levels of anxiety between the groups. This information will help us to determine if the intervention is effective in reducing the anxiety experienced by children with autism.

Who can take part in this study?

Parents of children aged 4-5 with autism who (1) will start school in 2022 and (2) who show behaviours indicative of Autism on the ADOS assessment.

The Effects of COVID-19 on Informal Caregivers of People with Dementia in Australia

Are you the primary carer for someone with dementia?

Central Queensland University is conducting research on the effects of COVID-19 on informal caregivers of people with dementia in Australia.

The main goal of this study is to better understand the caregiver experience during COVID-19. It will also increase general  knowledge on how the pandemic has affected caregivers, and guide us to help caregivers in the future.

You are invited to take part in a confidential online survey. The survey will take about 20 minutes of your time.

Estimating the value of informal care provided to people with dementia in Australia

Deakin University is conducting a study that aims to estimate the monetary value of the time spent providing informal care to a person with dementia.

Informal carers of people living with dementia in Australia are invited to complete an online survey, which asks questions about your opinion of different caring situations.

Getting Home Safely with Dementia

People with dementia are at greater risk of getting lost and experiencing devastating outcomes as a result. Queensland University of Technology (QUT) is leading research to help address this. They are looking for people with early stage dementia or memory problems to participate in an online interview with a member of the research team. The aim is to hear what people with dementia think should be done to improve the safety of people with dementia who go missing.

To be eligible you need to have early stage dementia or problems with your memory, be able to understand what your participation will involve, and be able to join the interview via Zoom using a device with a camera and microphone.

Participation involves attending two online meetings:

  • Zoom meeting 1: this meeting will be scheduled for a time that suits you and will take approximately 10-minutes. During the meeting we will answer your questions about the project, check your understanding of what is expected of you if you do participate, and record your verbal consent to participate.
  • Zoom meeting 2: this meeting will be scheduled for a time that suits you and will take approximately 30-minutes. During this meeting we will ask for your views about strategies that have been recommended by others that aim to improve the safety of people with dementia.

Your care partner is welcome to attend these meetings, however, this is not essential.

To thank you for your contribution they are offering you a $50 Woolworths voucher. If your care partner also attends, they are unable to give a second voucher.

An exploration of values associated with caregiving for elderly family members

Family caregivers provide a significant amount of the care received by the elderly and frail in Australia.

Carers are often older themselves and, coupled with the emotional, physical and financial effects of the caregiver role, are susceptible to burnout and poor health outcomes.

Australia’s ageing population means an increase in family caregivers is likely so more understanding of the motivations and their effects on health outcomes are needed to improve the quality of supports provided to carers.

The themes of responsibility and obligation overlap in relation to values that motivate family caregivers of the elderly.

Responsibility is associated with positive outcomes for caregivers and care recipients.

Obligation is associated with negative outcomes.

This study, conducted by the University of Southern Queensland, aims to differentiate between the two by exploring how family caregivers experience each theme.

Findings from this study will contribute to the body of knowledge about how to improve the quality of life of caregivers and care recipients in Australia.

Research is open to participants of all ethnicities, abilities, postcodes, sexualities and genders.

For more information or to register your interest,  contact Lauren Donsky on 0412 474 517 or via email ldonsky@wellnessaustraliagroup.com.au

Young people with cognitive disability transitioning to adulthood: experiences of violence, abuse, neglect and exploitation.

The University of Queensland is conducting a research project on Young People with cognitive disability.

They are currently wanting to interview young people with cognitive disability, aged 15 to 30 years. They are looking for people from a wide range of backgrounds, including people from CALD, First Nations and LGBTIQ+ communities.

This research project aims to understand experiences of violence, abuse, neglect and exploitation as told by young people with cognitive disability.

Findings will help the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

For more information about our research, please call Dr Kathy Ellem from the University of Queensland on 0426 816 595 or email k.ellem@uq.edu.au

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

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

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:
2020-27

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