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Participant information sheet:
Accessing Support Study
26 March2013
Please read the following information carefully before reading the consent form below. You may wish to print outthis document for your own records.
Project title:
Accessing support study: Help-seeking preferences among adults at risk of self-harm
This study has been approved by the UCL Research Ethics Committee
[Reference number:1975/002Date of approval: 21/12/2012]
Principal researcher:
Dr Alexandra Pitman, MRC Research Fellow
UCL Mental Health Sciences Unit, UCL Medical School, Gower Street, London WC1E 6BT
Study website:
We would like to invite you to participate in this research survey, which is a follow-up study to the 2010/2011 UCL Bereavement Study in which you took part. Before you decide whether you want to participate in this research it is important to read the following information carefully. This explains what will happen if you take part, and that you are free to withdraw at any time. You should only participate if you want to; choosing not to take part will not disadvantage you in any way.
If there is anything you do not understand, or if you would like any further information, please email the research team:
What is the purpose of this study?
The aim of this study is to find out which types of support people prefer to access at times when they feel overwhelmed or trapped by their circumstances, and at risk of harming themselves. When you completed the UCL Bereavement Study you told us about the impact of sudden bereavement on various aspects of your life, such as relationships, work, education, and your emotional well-being. We would find it very helpful to know more about any support you might have accessed at times when you may have felt overwhelmed or trapped by your circumstances. We would also like to hear your ideas about the kinds of support that would be helpful. Your responses will help us identify which types of services should be available to people who feel this way. Once the survey results have been analysed we will communicate our findings to the agencies that provide these kinds of support, and also use the results to guide future research.
Why have I been invited?
When you completed the bereavement questionnaire in 2010/11 you indicated that you would be willing to take part in future research relating to this topic, and you provided your contact details. Although we are contacting you via your email address, only our research team have had access to this email address. No-one else invited to take part in this survey will have been able to see your name or email. Your email address will not be included in our final data set, which means that your confidentiality is protected. All the data we collect will be made anonymous. This means that when we analyse it, no individual who participates will be recognisable.
What are the criteria for participation?
You are eligible for participation because:
- you took part in the UCL Bereavement Study in 2010/2011
- at that time you indicated that you had previously had experiences of: feeling that life was not worth living, having wished that you were dead, having thought of taking your life (even if you would not really do it), having made an attempt to take your life (by taking an overdose of tablets or in some other way), or having deliberately harmed yourself in any way (but not with the intention of killing yourself)
- at that time you volunteered to participate in a follow-up study and provided your contact details
Who is on the research team organising the study?
We are a research team from the UCL Mental Health Sciences Unit (University College London), which is part of UCL Medical School.Dr Alexandra Pitman, Dr David Osborn and Professor Michael King are all research psychiatrists.
What do I do if I decide to take part?
Taking part involves filling in an on-line questionnaire, which has 3 parts. The whole questionnaire should take approximately 15 minutes.
- Part 1 contains tick-box questions to update us on Census information such as your age, and employment status,and your level of social support.
- Part 2 contains tick-box questions to ask you about any support you might have used at times when you may have felt overwhelmed by your situation. These times may have been related to your experience of bereavement or to other pressures in your life. The questions also include free text boxes in case you wish to provide comments on whether any particular types of support were helpful or unhelpful.
- Part 3 contains tick-box questions to ask your views on what types of support would be helpful to other people who might be at risk of harming themselves.
You can complete the questionnaire wherever you have internet access. Given the topic of the research you may choose to do this in private or where you will not be disturbed.
What are the possible benefits of taking part?
Taking part provides researchers and healthcare professionals with very important information about the views and needs of people who have been through particularly difficult times. This helps plan what types of support should be provided, including the provision of peer training to help friends and family provide appropriate support. We hope that you may find it helpful to think about the questions we ask, and to give your views in an anonymous forum.
What are the possible risks of taking part?
Some people may find it distressing to think about difficult times in their life. If you feel unhappy about any part of the questionnaire you can choose to move on to the next question immediately. You also have the option to stop altogether, or to save your responses and return at a later time. On our study website(see full link at top of page 1) we have provided a link to a list of support services which other people have found helpful. Throughout the online questionnaire this link will be visible at the foot of the screen.
Can I withdraw at any time?
Yes. You do not have to take part in this study if you don’t want to. If you decide to take part you are still free to withdraw at any time and without giving a reason. Please note that the survey programme saves data on every page so it will not be possible for us to withdraw your data once you have gone beyond the first page.
What happens when the study ends?
The results will be anonymised, analysed and compiled into a report. No individual respondent will be identifiable from this information. A summary of the key findings will be available on the study website (see full link at top of page 1).
At the end of the questionnaire you have the option of requesting a copy of this report. However you can request a copy at any stage by emailing us on: .
We will also submit this report for publication in an academic journal, and circulate a summary to the agencies providing the relevant kinds of support.
Confidentiality
All data will be collected and stored in accordance with the Data Protection Act 1998. This means that all of the personal information that you give for this survey will be treated as confidential. It will only be used for the purposes of the survey and will not be transferred to an organisation outside of UCL. The data will be transferred from the Opinio secure survey site to the Department conducting the survey, which will retain it in compliance with the UCL Records Retention Schedule. The data will also be stored by UCL Information Services for six months and will then be removed from the Opinio system. We will make sure that information is stored securely and in an anonymous form. This means that your information will not be stored in a way that means it can be linked directly to you.
Giving informed consent to take part
We would now like you to think about whether you would like to take part in this study.
If so please read the statements on the consent form below.
Thank you very much.
Dr Alexandra Pitman
MRC Research Fellow
UCL Medical School
Informed Consent Form forAccessing Support Study
Private and Confidential
Please read the above Participant Information Sheet carefully before reading this consent form
Project title:
Accessing support study: Help-seeking preferences among adults at risk of self-harm
This study has been approved by the UCL Research Ethics Committee
[Reference number: 1975/002Date of approval: 21/12/2012]
Thank you for your interest in taking part in this research. Before you agree to take part you must be clear about what the project involves.
You are being to asked to give your consent to complete an internet questionnaire about times in your life when you have felt in need of support
Please read the points below to check that you agree with them before proceeding to the survey.
- I have read the notes written above in the Participant Information Sheet, and understand what the study involves.
- I understand that if I decide at any point in the questionnaire that I no longer wish to take part I can stop immediately. I do not need to notify the researchers involved, and no organisation will be made aware of whether I have participated in this study or not.
- I understand that if I choose to give my name or contact details within my responses or to request a copy of the final report,these details will only be available to the research team.
- I understand that the information I give will be treated as strictly confidential and handled in accordance with the provisions of the Data Protection Act 1998.
- I understand that the information I have submitted will be published as a report and that I can be sent a copy on request. Confidentiality and anonymity will be maintained and it will not be possible to identify me from any publications.
- I agree that my non-personal research data may be used by others for future research. I am assured that the confidentiality of my personal data will be upheld through the removal of any identifiers.
If you agree with all of the above, please open the email entitled “Invitation to participate in follow-up study to UCL Bereavement Study”. This contains the link to the online questionnaire. Clicking on this link will open up the front page of the questionnaire.
Thefirst question will check that you agree to take part. If you answer “Yes – I agree” you can then proceed to the rest of the questionnaire.
If you have any further queriesbefore participating in the survey, or problems accessing the questionnaire, please email:
Thank you for your time. We very much appreciate your help.
Dr Alexandra Pitman
MRC Research Fellow
UCL Medical School
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