Participant Information Sheet

Please read the Participant Information below to help you decide if you would like to take part in this study or not.
1.       What is the study about?

You are invited to participate in a study that identifies the opinions and views of people who have had lived experience of Acquired Brain Injury (ABI) on the prioritisation and design of research that investigates returning to work after an ABI.

We want to hear your views about the relevance and importance of research that explores returning to work 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 with people who participate in research about returning to work after stroke. 

You are receiving this invitation to participate in this research because you have experienced an ABI and are a member of the Genyus Network and/or the Stroke Foundation.

2.       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 or The Stroke Foundation or Genyus Network.

3.       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 or return to work.

4.       What will I be asked to do?

If you want to take part in this study, you will also be asked to complete an online survey that will ask about your experience of vocational rehabilitation and your perspectives about the research that should be conducted to improve vocational rehabilitation and improve return to work outcomes. It will take approximately 30 minutes to complete the survey.
5.       What are the benefits?

The benefit of taking part in this study is that you can share your experiences and opinions regarding interventions that support returning to work 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.

6.       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, thinking about work after stroke 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.

7.       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.

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

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.

8.       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 people following an acquired brain injury can be summarised and given to you by the investigator towards the end of the project. Please email Sophie O’Keefe (Primary Investigator) if you would like to receive a copy of this summary. We anticipate that this summary will be available around early 2020.
9.       What if I change my mind?

 Once you submit the online survey, we are unable to withdraw your data from the survey component of the study as all survey responses are anonymous, meaning we are unable to identify which responses were made by you to withdraw them from the study

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:

Sophie O'Keefe
La Trobe University 
Phone: 03 94796766

11.       What if I have a complaint?

If you have a complaint about any part of this study, please contact:

Senior Research Ethics Officer
+61 3 64791443

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