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Study information

Examining the wellbeing of parents of children who have been diagnosed with a brain tumour

My name is Briony Westgate, I am a Trainee Clinical Psychologist and I would like to invite you to take part in a study that is looking at parents’ wellbeing after their child has been diagnosed with a brain tumour. You do not have to make any immediate decisions about taking part in this online study.

What is the purpose of the project?

This project aims to looks at parents’ wellbeing following their child’s brain tumour diagnosis. The study will look at parents’ post-traumatic stress symptoms and look at what factors might contribute to this. Post-traumatic stress symptoms can include having nightmares, trouble concentrating, and feeling numb, amongst other symptoms. There is little research into what factors might impact this in parents of children with a brain tumour and this research aims to increase our understanding of what may contribute to this.

Can I take part?

We are asking parents of children aged 4-16 years who are receiving care from a paediatric oncology service and have been diagnosed with a brain tumour at least 6 months ago to take part. 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 completely up to you.

We are not asking parents of children who ended treatment more than five years ago to take part in the current study. Parents who find it difficult to understand written English would not be suitable for the current study.  We are also not approaching parents of a child who is receiving palliative care.

Do I have to take part?

No, it is up to you to decide if you would like to take part.

What would taking part involve?

After you have provided your consent on the following page you will be presented with five questionnaires that can be completed on this online survey. The questionnaires will ask you about some of your thoughts and feelings in relation to your child’s diagnosis. In total these should take about 20 minutes to complete.

What are the disadvantages of taking part?

It is not envisaged that there are any risks to you in taking part.  However, we acknowledge that you may become upset when completing the questionnaires as they include sensitive questions about some of your feelings in relation to your child’s diagnosis. You do not have to answer all the questions if you do not want to and if you do become upset it is important to remember that you can stop taking part at any time. If you do experience any distress, there is information at the bottom of this information page about who you can contact (the same information will also be displayed at the end of the study).

What are the possible benefits of taking part?

This study may not benefit you directly, but it is hoped that the information gathered in this study will help to increase our understanding about what factors may impact post-traumatic stress symptoms in parents.

What if there is a problem?

If you have any concerns about any aspects of this study, you should speak to the researcher directly who will try to answer your questions. If you remain unhappy you can make a formal complaint and can contact the research supervisor, Kiki Mastroyannopoulou (K.Mastroyannopoulou@uea.ac.uk) or the Deputy Programme Director, Professor Sian Coker, (S.Coker@uea.ac.uk).

What happens if I don’t want to carry on with the study?

You are free to withdraw from the study by clicking off this internet page. As the study is anonymous, once you have submitted your answers you will be unable to withdraw your data.

Will information be kept confidentially?

All information you complete will remain confidential and yours and your child’s names or personal information will not be collected.

The University of East Anglia is the sponsor for this study based in the United Kingdom. We will be using information from you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of East Anglia will keep identifiable information about you for 10 years after the study has finished.

Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

You can find out more about how we use your information at https://portal.uea.ac.uk/information-services/strategy-planning-and-compliance/regulations-and-policies/information-regulations-and-policies/data-protection

Who has reviewed the study?

All research in the NHS and at the University of East Anglia is looked at by an independent group of people called a Research Ethics Committee, to protect your interests. This study has been reviewed and given a favourable opinion by the Social Care Research Ethics Committee.

What will happen to the results of the study?

We intend to publish the results of this study in a journal. There will be no personal details used in this.

Who is organising and funding this study?

This study is being organised by Miss Briony Westgate (Trainee Clinical Psychologist) and forms part of Briony Westgate’s doctoral thesis, under the supervision of Kiki Mastroyannopoulou. The University of East Anglia are funding the study.

Further information and contact details

If you have any questions, I can be contacted on the following email address:

Email: B.Westgate@uea.ac.uk

Support you can access

If you become upset when completing this study and would like some more support, please go to see your General Practitioner (GP). You may also contact Samaritans on 116123; this service is free to call and open 24 hours a day.

There is also information about support available from the website below if you would like to read about how you can access more information and support in relation to your child’s brain tumour:

https://www.thebraintumourcharity.org/get-support/

In addition, there are resources and stories on the website below from a charity that supports survivors of brain tumours, and their families:

https://successcharity.org/community/