King S College Research Ethics Committee Ref: HR-15/16-3716

King’s College Research Ethics Committee Ref: HR-15/16-3716

INFORMATION SHEET FOR PARTICIPANTS

Lightening the shadow of abuse: Supporting survivors approaching childbirth

We would like to invite you to take part in a study being undertaken by researchers from King’s College London in collaboration with The Survivors Trust. You should only participate if you want to; choosing not to take part will not disadvantage you in anyway. Before you decide whether you want to take part, it is important for you to understand why the research is being done and what your participation will involve. Please take time to read the following information carefully and discuss it with others if you wish. Ask the researchers if there is anything that is not clear or if you would like more information.

What is the purpose of the study?

Childhood sexual abuse (CSA) is a serious public health issue that affects about one in five women worldwide. It is estimated that there are up to 1.3 million children living in the UK who will have experienced sexual abuse by the time they reach the age of 18. Only one in eight of these children come to the attention of statutory bodies which means that seven out of eight potentially end up hidden as adults. Survivors do not often tell midwives or other healthcare professionals about what happened to them as children.

Pregnancy and birth are times of great change for any woman but can present particular challenges for those who have experienced CSA. Survivors sometimes find that they are reminded of their abuse during pregnancy and birth in ways that may take them by surprise and that may be very perplexing at the time. They have indicated that it would have helped them to know that their experiences are shared by other survivors. Many report guilt and shame in relation to their childhood history. Although they feel scared and alone during their pregnancy and birth, they dare not ask for help from those providing their care because they are worried about what people will think and what will happen to them.

The aim of this study is to work with survivors in the production of an on-line learning resource that will help to prepare those who have experienced CSA for pregnancy, birthand caring for a new baby. This will be a resource that survivors are able to access at their own pace and in private. It will help them to understandtopics, which will be identified during the project, that are important for those who are contemplating pregnancy and birth, and explore strategies that helped other survivors to cope.

Why have I been approached to take part?

We are inviting survivors of childhood sexual abuse (CSA) who have either experienced pregnancy and birth or who would like to have a baby at some point in the future to take part. We are doing this with the help of Mumsnet and also organisations supporting survivors of CSA.

Do I have to take part?

Participation is voluntary. You do not have to take part. You should read this information sheet and if you have any questions you should ask the research team.

What will happen to me if I take part?

If you would like to take part, you can do this is one of the following ways:

Answer our questions, either by clicking on the link that you will find on The Survivor Trust website alongside this information sheet or download/print the attached document and complete a copy that you can then send to The Survivors Trust. They will forward the information to the research team at King’s College London. The research team will have no way of knowing who sent the information unless you indicate in the questionnaire that you would like to be involved in this project later.

Talk to us either face to face (e.g. via WhatsApp) or by telephone. If this is your preferred option please complete the reply slip to give us your contact details. We will arrange to talk to you at a convenient time. We will send you a consent form by email a couple of days before we speak. Before we begin asking your views we will read the consent form out loud so that you can tell us if you agree to take part in the study. We will also ask some information about you (for example your age, and your ethnicity). You do not have to answer those questions if you would prefer not to. We will record the information you give us on a form, but not with your name. Our discussion will be recorded using a digital voice recorder. An external transcription agency which has signed a confidentiality and data protection agreement will transcribe the recording. All recordings of data on audio-equipment will be destroyed after transcription.No video recording will be made.

If you have already had a baby, we are interested inwhat you wish you had known before. If you have not yet had a baby, we would like to know the sort of things that as a survivor you want to know about having a baby. We will use what we learn to plan the resource. We will also draw on what we know from the previous research we have done on the maternity care experiences of women who were sexually abused in childhood to help us.

If you would like to be involved as the project progresses, we will send you an outline of the resource so that you can comment. If you would prefer, we will invite you to two workshops so that we can produce a resource that meets your needs and that you are happy with. In the workshops, we will ask your views about the work-in-progress for the resource. We would also like to invite you to take part in individual user testing of the on-line resource once the prototype is finished. Although we hope that you will want to be part of the workshops and user testing, you will be free to decide if you want to take part. If you attend the workshops, we will ask you to sign a consent form at the beginning and also before the user testing starts. When the resource is completed, we will invite everyone who has taken part and others who may be interested in the final product to a launch event.

What are the possible benefits and risks of taking part?

Taking part may or may not be of benefit to yourself, but together with the research team you will produce a resource that will benefit women who have experienced childhood sexual abuse and are pregnant or wish to have a baby. It will also help those, such as healthcare professionals, who have a role to play in supporting them. If you attend the workshops,we will ask you to sign a consent form at the beginning and you will be offered a £20 Love2Shop voucher by way of a thank you. Your travel and childcare costs will be reimbursed if you return a completed expenses claim form with receipts/invoices. We will send you a copy of the study report if you let us know that you wish to receive one.

We will not ask about your experiences of childhood sexual abuse.All our questions have been carefully designed so that they do not cause distress to you. However, there may be some sensitive issues or circumstances that we are not aware of, or other participantsin the workshopsmay raise issues that you find distressing. Should you become upset we will discuss with you whether you want to stop or take a break if we are speaking with you or at the workshops. If you are writing your answers, you can stop at any time and return to them later if you wish to do so.We will also provide every participant contact details of relevant services for support. We encourage you to keep these details in case you find you would like to make contact in the weeks after taking part.

Will my taking part be kept confidential?

All your contributions including anything you say during workshops anduser testing are regarded as strictly confidential. All data for analysis will be anonymised. In reporting on the research findings, we will not reveal the names of any participants. At all times there will be no possibility of you as an individual being linked with the data.

The UK Data Protection Act 1998 will apply to all information gathered during the study. Data will be held on password-locked computers/servers and locked cabinets within King’s College London. At the university, only the research team will have access to any electronic information and paper documents. An external transcription agency will sign a confidentiality and data protection agreement and comply with all appropriate data protection and confidentiality standards. Once the transcript is completed, the audio-recordings will be destroyed. All study data will be retained for seven years from completion, in line with the data management policy at King’s College London.

How is the project being funded?

The project is being funded by a Wellcome Trust Engaging Science People Award. The study has been approved by the King’s College London Research Ethics Committee.

What will happen to the results of the study?

We will produce a final report summarising the main findings, which will be sent to you if you would like to receive one. The electronic resource that will be produced as part of the study will be made available on The Survivors Trust website for anyone who is interested to access. We also plan to disseminate the research findings through publication and conferences within the UK and abroad. Findings used in publications and at conferences will not identify participants.

What do I need to do if I am interested in taking part?

If you are interested in taking part, please:

Follow the link to access questions for completion on-line or to be printed and posted to TST:

The Survivors Trust

Unit 2, Eastlands Court Business Centre
St Peter’s Road
Rugby
Warwickshire
CV21 3QP

email: to organise talking to a researcher either by WhatsApp or telephone

On receiving your email indicating your interest in participating, we will contact you and agree time/date for speaking to us.

Who should I contact for further information?

If you have any questions or require more information about this study, please contact us using the following contact details:

Dr Elsa Montgomery

Florence Nightingale Faculty of Nursing, Midwifery& Palliative Care

King’s College London

57 Waterloo Road

London

SE1 8WA

Tel: 020 7848 3632

Email:

What if something goes wrong?

If this study has harmed you in any way or if you wish to make a complaint about the conduct of the study you can contact King's College London using the details below for further advice and information:

The Chair

Psychiatry, Nursing and Midwifery Research Ethics Subcommittee Chair

Thank you for reading this information sheet and for considering taking part in this study.

Version 2: 24th November 2017