Information Sheet for Carers

8% of survey complete.
Project title: Effectiveness of the SUCCEED DVD for Patients with Eating Disorders and their Recovery Mentors

Ethics approval reference:

Principal Investigator: Professor Janet Treasure

Research co-ordinator contact: Charlotte Rhind, PO59 103 Denmark Hill, King's College London, SE5 8AF/ 020 7848 5963 /


Hannah King, Salomons Centre for Applied Psychology, Salomons Estate, Broomhill Rd, Royal Tunbridge Wells, Kent TN3 0TG /

Invitation to the survey

You are invited to take part in this survey. Before you decide, we would like to provide you with some information so that you can be clear what it will involve. Please take time to read the following information and discuss it with your family, friends, relatives or your GP if you wish. If you need any further information you are very welcome to contact us.

Part 1 tells you about the study, so you can get an idea of whether you want to take part. If you are interested, part 2 provides more detail to consider about before you consent.
Part 1

What is a recovery mentor?

This is the name we use for someone who cares for the person with the eating disorder, has 7 or more hours contact time with them per week (including telephone calls), and supports them in their recovery.

Purpose of the survey

We wish to assess whether the SUCCEED DVD plus email coaching is effective for improving eating disorder symptoms. We also aim to test whether the SUCCEED DVD impacts treatment satisfaction and distress in recovery mentors. We are not investigating causes of eating disorders.

Am I eligible?

You are eligible for this project if you are in a supporting role for someone who has received a formal diagnosis of an eating disorder (Anorexia Nervosa/Bulimia Nervosa/Eating Disorder Not Otherwise Specified) and is currently receiving treatment for their eating disorder, as an outpatient, daypatient or inpatient. Involvement in this project is intended as a treatment "add-on". You will need to be able to read and write English.

Do I have to take part?

It is up to you to decide whether or not to participate in this study. You can withdraw at any time. We will keep the information you have given us to this point to add to our study data unless you ask us not to. The person you care for will also need to want to take part.

What will happen if I take part?

You will complete the consent form below, and then this online questionnaire, which should take no longer than 20 or 30 minutes. This questionnaire includes questions regarding your loved one and yourself and the impact of their illness on your lives. You will also be invited to complete a 'follow-up' survey at two later time points (three and six months after starting the training) which will repeat only some of the questions presented in the first questionnaire. The person you care for will also be required to complete a set of online questionnaires at these times.

You will be emailed a copy of the information sheet for patients. If you think there is a chance the person you care for will have any difficulty understanding it, or if they are under 16, please read it with them before they consent to take part.

What are the possible benefits of taking part in this study?

We hope that the information you provide will help the development and improvement of services for patients with eating disorders, and for their recovery mentors. You will learn how to use particular communication strategies to help the person you care for tolerate changing their behaviour.

Will my participation in this study be kept confidential?

Yes. The information that you give us will be treated as strictly confidential and will be completely anonymised and stored separately from your name and contact information. This anonymous information will be shared with the other authorised researchers. General anonymised information may be used for training.
Part 2

When will training begin?

Once you and the person you care for have completed the initial questionnaires, we will randomly allocate you to begin Recovery Mentor training either now or after a waiting period of 6 months. As part of the Recovery Mentor training you will be required to watch the SUCCEED DVD (which we will loan you) and be available for email contact with your Recovery Coach, over a 4 week period. You need to be able to contact your coach at least twice a week, and complete assignments. The email coach will receive professional supervision during your contact.

Who will know I’m taking part and who will be able to see the answers I give on the questionnaire?

The only people that will know you are taking part are our research team, the person you care for, and the medical professionals involved in your treatment. We won’t share the answers you give on the questionnaire with the person you care for.

The information you give us on the survey will be kept separately from your name and contact details, so it is completely anonymised. This anonymous data will then be shared with the other researchers for the study, and general information may be used for training professionals.

As part of the questionnaire, we will ask for the contact details of the lead clinician responsible for the person you care for’s treatment. We will share your answers about your name and address, and the name, age, BMI and diagnosis of the person you care for with this clinician, as part of our verification and safety checks, but will not share any of your other answers.

The only exception to this confidentiality would be in the unlikely event that we had good reason to think we needed to share your information to prevent serious harm coming to you or someone else. For example, if you told us on the questionnaire that you were going to harm yourself. In a situation like this, we would always discuss with you first if at all possible, and would share the smallest amount of information necessary to prevent harm.

Are there any other reasons I might not be able to take part in the study?

We will ask the clinician to confirm that there is no reason they are aware of for you and the person you care for not to take part in the study. Reasons for this include the person you care for not receiving any treatment, or having another serious problem that complicates the eating disorder. Examples are bipolar affective disorder, serious substance abuse, or having serious physical problems.

It is very unlikely, but if there is good reason for you to stop the study, we will talk to you and the person you care for about this to decide what to do and make sure you are supported.

Are there any risks associated with taking part?

We do not anticipate there to be any risks with completing questionnaires or emailing coaches. Some people find watching the DVD to be emotional, as it relates to their situation, so there is a chance you could feel upset by some of the material presented. Your coach will be available by email to work through any feelings that you have, and you can call us on the number above, or the Beat helpline on 0845 634 1414.

What if something goes wrong?

Any complaint about the way you have been dealt with during the study will be addressed. To start with, please contact the researcher (email address above). If you are still unhappy and want to make a formal complaint, please contact ______________
What will happen to the results of the study?

The information you and the other people taking part give us will be analysed. We plan to publish the findings within around two years.

Will I be able to see the results?

When you consent you will be asked whether you would like a copy of the results. If yes, we will send these to you when they are ready. If you don’t want to consent but still want to see the results, please email Hannah:

How will my data be kept?

Information we collect from you will be stored securely on password-protected computers, and be identified by a code, rather than your name. It will be kept for 10 years, then destroyed. The only people who will have access to it will be the researchers who have been approved to work on this study. Once it has been completely anonymised (so you can not be identified at all) the data would be available to selected others, for example university examiners and other researchers.

Contact for further information

If you have any questions or wish to discuss any aspect of your participation in this project, please contact Hannah King (project coordinator) using the contact details above.

Question Title

* 1. Consent to participate in this study

In order to proceed, you must agree consent by ticking the box below. Please read carefully.

Question Title

* 2. Would you like to receive a summary of the research findings?