University of East Anglia

What is the purpose of this study?
This study aims to look at the relationship between post-traumatic stress and post-traumatic growth in parents following their child’s acquired brain injury. When a child has a brain injury it can understandably be a traumatic event for some parents. How this effects people can vary. Some people might develop symptoms of post-traumatic stress including flashbacks, nightmares and feeling numb. Some might find new positive meanings in life despite their distress. This is called post-traumatic growth. In order to understand how to best support parents affected in this way, we are interested in finding out more about post-traumatic stress, post-traumatic growth and how they might be related.

Can I take part?
We are asking parents/primary caregivers of children aged 1-18 years who experienced an acquired brain injury at least 6 months ago to take part. Parents of children with any kind of ABI which is not getting worse, or where your child is not currently receiving major medical treatment (e.g. brain surgery, brain radiotherapy/chemotherapy) are eligible. We are inviting both parents of the same child to take part, but you can also take part without the child’s other parent, this is your choice.
Sorry, but for this study we are not asking parents of children with progressive neurodegenerative illnesses to take part in the current study. Parents who find it difficult to understand written English would not be suitable for the current study.

Do I have to take part?
No, it is your choice whether you take part or not. If you decide to do so, please click next to continue. If you do not wish to participate, close this window. Please keep in mind that your participation in this study is voluntary so you can withdraw from the study at any time without explanation up until you submit your answers.

What do I have to do?
Please take your time to read and think about the information here before deciding to take part. If you decide you want to complete the survey, click “Next” at the bottom of this page.
This will take you to a consent page. Please read this carefully, and if you consent to participate click “Agree”.
Once you have clicked “Agree” the survey will start. You will need to complete all the questions. Please read the instructions for each set of questions. The questions will take approximately 30 minutes to complete. You will then need to submit your answers by clicking “Submit”.

We are also inviting you to participate in a second online survey in about 6 months’ time so we can see how things might have changed for you. Again, this will be in the form of an online survey. This second survey will take 10 minutes to complete. You will be given the option to “opt in” to this second survey at the end of the questionnaires. You will be asked to provide an email address so you can be contacted in 6 months’ time. Please keep in mind that this is optional, you do not have to take part in this second part of the study.

What are the possible disadvantages or risks of taking part?
We do not expect that the study will cause you any harm or risk by taking part. It may be possible that the study causes you to think about personal upsetting matters, including difficult thoughts and feelings. If this does happen, a list of support services will be provided which you can contact for extra support. If you withdraw from the study, this can be downloaded from XXX.

What will happen to my information?
Since you will not be asked to provide any personally identifiable information, all the data collected from this study will be anonymous. The data will be held by the research team at the University of East Anglia and may be shared securely with other researchers.
You can withdraw from the study at any point without having to give a reason, up until you click submit. To do this simply close the browser or survey. However, you cannot withdraw once you have clicked submit as responses are anonymous, so it will not be possible to identify individual responses.

If you choose to opt in to the second part of the study, your email address will be held securely until the second part of the study has finished. It will then be confidentially deleted before data analysis.

What will happen to the results of this study?
We plan to present the results of this study at conferences, in a peer-reviewed journal and using social media. No participants will be identifiable in any of these cases.

If you would like to receive a copy of the final findings, please contact [email protected] with your request.

Who is organising the research?
This study is being organised by Abigail Perkins, Dr Fergus Gracey and Dr Kiki Mastronyannopoulou at the UEA. The study is also being supported by Dr Suzanna Watson and Dr Kate Psaila at the Cambridge Centre for Paediatric Neuropsychological Rehabilitation (CCPNR).

Who has reviewed this study?
This study has been reviewed independently by colleagues and granted ethical approval by FMH Ethics committee at the University of East Anglia.

How can I find out more?
You can contact the research team: Abigail Perkins Dr Fergus Gracey
[email protected] [email protected]

If you have any concerns or complaints, please contact: Prof Niall Broomfield, Head of Department
[email protected]