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Learnings from lockdown: experiences and perspectives from individuals with ABI and their carers in Australia during the COVID-19 pandemic

Study summary: We are conducting this study to understand how the COVID-19 pandemic has impacted people with acquired brain injury (ABI; e.g. stroke, traumatic brain injury, brain tumour, hypoxic brain injury etc). We are looking for adults with ABI who live in Australia, or carers/family members of adults with ABI to participate. If you wish to participate you will complete a survey about your experience of the pandemic which should take 20 - 30 minutes for you to complete. Please carefully read the information about the study below before beginning the survey. 

This research is being conducted by the following researchers:
  • Chief Investigator - Dr Dana Wong (La Trobe University)
  • Associate Investigator - Professor Jacinta Douglas (La Trobe University)
  • Research Assistant - Nick Sathananthan (La Trobe University)

1. What is the study about?
The COVID-19 pandemic and its associated social distancing measures and lockdowns have had a significant impact on many aspects of health, wellbeing, and functioning for most individuals. However, it is possible that the impact of the pandemic may have been greater or different in those with ABI and their family members and caregivers.  
The broad aim of this study is to understand how the COVID-19 pandemic has impacted individuals with ABI and their caregivers/family members in Australia. We seek to understand how the pandemic and lockdowns have affected your health, mood, relationships, work, general behaviour, and overall rehabilitation and recovery from ABI. We also seek to understand what you may have learnt from the experience of living through a pandemic. The findings of this study may help in the development of recommendations on how to best support those with ABI, both in future global crises and more generally. 

2. Do I have to participate?
Being part of this study is voluntary. We ask that you read the information below carefully and decide at the end whether you would like to participate in this research. If you decide not to participate this won’t affect your relationship with La Trobe University or any other listed organisation.

3. Can I participate?
You can complete this survey if you are:
  • An individual with an ABI (e.g. stroke, traumatic brain injury, brain tumour, hypoxic brain injury) OR a carer/family member of an adult with ABI 
  • 18 years of age or older
  • Living in Australia
  • Able to independently complete the survey and provide consent below

4. What will I be asked to do?
You will be asked to complete an online survey that will take you between 20 – 30 minutes to complete. If you are an individual with an ABI, the survey will ask about your own experience of the pandemic. If you are a caregiver of someone with ABI, the survey will mainly ask about the experience of the person you provided care for during the pandemic, with some questions also asking about your experience of providing care during this time. The survey will ask information about:
  • Demographic characteristics
  • Information about the brain injury
  • Your response to the pandemic
  • The impact of the pandemic on different aspects of your life
  • Any learnings or positive changes that you experienced during the pandemic  
At the end of the survey you will be asked if you would like to register your interest to participate in an interview about your experiences during the pandemic. The interview will take 20-30 minutes and will ask you additional questions about your experience of the pandemic. If you are interested in this, you will be asked to provide your contact details. If you do this, you are not obliged to participate in the interview and you can change your mind later. You will be asked to provide your written consent again before you participate in the interview by signing a consent form (either hardcopy or electronically). 

5. What are the benefits?
It is unlikely that you will receive any direct benefit by participating in this research. However, by participating in this survey you may be helping others with brain injury and disability by improving our understanding of how to best support people with ABI. 

6. What are the risks?
It is possible that completing this survey may trigger uncomfortable feelings relating to how you feel about your ABI or the experience of the pandemic. If you feel upset or distressed as a result of your participation in this research, please contact us immediately so we can discuss the best way to manage your concerns.
  • Dr Dana Wong - Chief Investigator 
  • (03) 9479 5079 
  • D.wong@latrobe.edu.au
You can also contact Lifeline on 13 11 14 for 24/7 support if you wish to speak to someone outside of La Trobe University.

7. What will happen to information about me?
By ticking the consent button at the bottom of this page and clicking next, this tells us you want to take part in the study. You can download an electronic copy of this participant information statement for your records by clicking here. This option will be provided again at the end of the survey. 

We will collect and store information about you in ways that will not reveal who you are. This means that you cannot be identified in any type of publication from this study. We will keep your information for 7 years after this project is completed. After this time, we will destroy all of your data. The storage, transfer and destruction of your data will be undertaken in accordance with the Research Data Management Policy. The personal information you provide will be handled in accordance with applicable privacy laws, any health information collected will be handled in accordance with the Health Records Act 2001 (Vic). You have the right to access and correct your personal information by contacting the research team. 

8. Will I hear about the results of the study?
The results of the study can be made available to you at the completion of the study. If you would like them sent to you, please email Dr Dana Wong at d.wong@latrobe.edu.au. It is anticipated that the results of this research project will be published and/or presented in a variety of forums. In any publication and/or presentation, information will be not be provided in such a way that would identify you, except with your permission. 

9. What if I change my mind?
If you no longer want to complete the questionnaire, simply close the web browser. If you change your mind after clicking on the ‘Submit’ button, we cannot withdraw your responses because we cannot link who you are with your questionnaire responses. Your decision to withdraw at any point will not affect your relationship with La Trobe University or any other organisation listed. 

10. Who can I contact for questions or want more information?
If you would like to speak to us, please use the contact details below:
  •  Dr Dana Wong - Chief Investigator
  • (03) 9479 5079 
  • D.wong@latrobe.edu.au

11. What if I have a complaint?
If you have a complaint about any part of this study, please contact:
  • Senior Research Ethics Office
  • Ethics reference (HEC21043)
  • +61 9479 1443 : humanethics@latrobe.edu.au 
Consent Form – Declaration by Participant
I (the participant) have read and understood the Participant Information Statement, and any questions have been answered to my satisfaction. I agree to participate in the survey, and I know I can discontinue at any time during completion of the survey by closing the web browser.

I agree information provided by me or with my permission during the project may be included in a thesis, presentation and published in journals on the condition that I cannot be identified.

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