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1. Why have I been asked to participate in the upcoming genyus Roundtable?
You have received this invitation to participate in this focus group because you are an Australian who has experienced an ABI, and are a member of genyus network and/or the stroke foundation.
2. What is this study about?
Partnering with people with lived experience of Acquired Brain Injury to co-design vocational pathways throughout recovery. The aim of this study is to identify the opinions and views of people with lived experience of Acquired Brain Injury (ABI) on the prioritisation and design of research that investigates undertaking meaningful vocation after ABI. We want to hear your views about the relevance and importance of research that explores engaging in meaningful vocation after ABI, ethical and consent issues as well as important outcomes you believe should be measured. We are also interested in your perspectives about the appropriate timeframes and methods for follow up for people with lived experience who participate in research.
3. Do I have to participate?
Being part of this study is voluntary. If you want to be part of the study, we ask that you read the information below carefully and ask us any questions. You can read the information below and decide at the end if you do not want to participate. If you decide not to participate this won’t affect your relationship with La Trobe University and/or The Stroke Foundation or the Genyus Network.
4. Who is being asked to participate?
You have been asked to participate because you have lived experience of an ABI, such as a traumatic brain injury or a stroke that has impacted your ability to participate in meaningful vocation.
5. What will I be asked to do?
If you want to take part in this study, we will ask you to participate in an online focus group discussion where you will be asked questions about your opinions of the importance of research into vocational intervention and your views about the most appropriate methods to conduct such research. It will take approximately 1 and a half hours of your time to be part of this study (Approximately 30 minutes to set up for participation in the online focus group/discussion + 1 hour to participate in the online discussion).
6. What are the benefits?
The benefit of taking part in this study is that you can collaborate with your community of peers to share your experiences and opinions regarding interventions that support pathways to meaningful vocation after ABI and how this should be tested for effectiveness using research. The expected benefits to society, in general, are that future interventions that target returning to work after ABI and research testing these interventions will be developed in response to the experiences and opinions of people with lived experience.
7. What are the risks?
With any study, there are (1) risks we know about, (2) risks we don’t know about and (3) risks we don’t expect. Participating in this research has no foreseeable risks, however for some participants, talking about pathways to meaningful vocation may trigger some discomfort. If as a result of participating in this study you experience feelings of discomfort or emotional distress, please alert one of the investigators who will arrange support from a social worker, psychologist or medical physician, through Medicare. You may also feel uncomfortable during the discussion; if this happens, you are free to withdraw from the discussion at any time. You do not need to stay until the end of the group.
8a. What will happen to information about me?
All information collected from you for this study will be stored confidentially. Only members of the research team will have access to identifiable data. All data will be coded and de-identified and subsequently analysed and reported in such a way that responses will not be able to be linked to any individual. The data you provide will only be used for the specific research purposes of this study. It is anticipated that the results of this research project will be published and/or presented in journal articles, a student thesis and in conference presentations. In any publication and/or presentation, the information will be provided in such a way that you cannot be identified, except with your permission. Your name and personal information will not be used in any publication or presentation.
8b. What will happen to information about me? (cont'd)
We will keep your information for 7 years after the 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 https://policies.latrobe.edu.au/document/view.php?id=106/. 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). Subject to any exceptions in relevant laws, you have the right to access and correct your personal information by contacting the research team.
9. Will I hear about the results of the study?
The results from this study, as well as any recommendations we develop for how to improve vocational rehabilitation for brain injury survivors can be summarised and given to you by the investigator towards the end of the project. Please email Sophie O’Keefe (Primary Investigator) s.okeefe2@latrobe.edu.au if you would like to receive a copy of this summary. We anticipate that this summary will be available around early 2020.
10a. What if I change my mind?
You may choose to no longer be part of the Roundtable discussion at any time up until four weeks following the discussion. After four weeks your de-identified data will have been analysed and we are unable to determine the specific responses that were made by you. If you wish to withdraw up to four weeks following your focus group discussion you can let us know by: 1. Completing the ‘Withdrawal of Consent Form’ (provided at the end of this document); 2. Calling us; or 3. Emailing us
10b. What if I change my mind? (cont'd)
Your decision to withdraw at any point will not affect your relationship with La Trobe University or any other organisation listed. When you withdraw we will stop asking you for information. Any identifiable information about you will be withdrawn from the research study. However, once the results have been analysed we can only withdraw information, such as your name and contact details. If results haven’t been analysed you can choose if we use those results or not.
11. Who can I contact for questions or want more information?
If you would like to speak to us, please use the contact details below: Sophie O’Keefe La Trobe University 94796766 s.okeefe2@latrobe.edu.au
12. What if I have a complaint?
If you have a complaint about any part of this study, please contact: HEC19403 Senior Research Ethics Officer +61 3 9479 1443 humanethics@latrobe.edu.au
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