Foundation for Excellence in Mental Health Care
Hearing Voices Research & Development Fund
Questionnaire Frequently Asked Questions
We would like to invite you to take part in a research study by completing a questionnaire about your experience with your hearing voices group. Your assistance will help us to build a core of knowledge around Hearing Voices groups in the United States. Before you decide whether or not to take part, please read the following information. If you have any questions please do not hesitate to contact the research team.
Please read all information carefully
- What is the questionnaire about?
- What does the term "Voice Hearer" mean for the purposes of this questionnaire?
- Who can take part?
- Why take part?
- How long will the questionnaire take?
- What happens after I've agreed to complete a questionnaire?
- What if I'd prefer filling out a printed copy of the questionnaire?
- What about my privacy and confidentiality?
- Are there any risks involved in taking part?
- If I agree to answer a questionnaire now, can I change my mind?
- Who developed this questionnaire?
- Who is organizing and funding the research behind this questionnaire?
- Who has reviewed the questionnaire?
- How can I reach out to the research team?
Title: How do Hearing Voices peer support groups work?
Research Team: Gail Hornstein, Professor of Psychology, Jacqui Dillon, Chair of the Hearing Voices Network, England, Lisa Forestell, Chair of the Hearing Voices Network USA, and Andrea Weisman, PhD.
Research Coordinator: Lisa Forestell
What is the questionnaire about?
The questionnaire is part of a research project investigating Hearing Voices peer-support groups in the United States. We’re interested in gaining a better understanding of how Hearing Voices groups work and what essential elements of hearing voices groups make them effective for people who hear voices, see visions or have other unusual or extreme experiences. Those of us who are voice hearers know from our own experience what has been useful for us and our fellow researchers have their own ideas, too, but it is absolutely critical to invite you to this table, this unique space, to share your story of your experience with your hearing voices group, to be a part of this singular project (the first on US soil) that aims to include voice hearers at every stage of the research process and to use its outcomes to affect positive change.
What does the term “Voice Hearer” mean for the purposes of this questionnaire?
For the sake of efficiency in word usage, the term “voice hearer” will refer to anyone who hears, sees, feels, tastes, or smells (i.e. senses) things that others do not.
Who can take part?
If you identify as a voice hearer (by the definition above,) have experience as a member of a Hearing Voices peer-support group, and you are 18 years of age or older, then you are invited to participate and complete a questionnaire.
Why take part?
Many Hearing Voices groups identify as a part of the Hearing Voices Network (HVN). This worldwide network supports opportunities for the voices of its members to be heard in ways that do not assume illness or deficit and encourage exploration of meaning and understanding. This project’s team identifies strongly as a part of this greater movement and believes that it is critical that your voice and your story be heard as a part of this unique research (in which voice hearers are involved in all aspects) and to inform the Hearing Voices Network moving forward.
How long will the questionnaire take?
This questionnaire is an opportunity for you to share your story about what Hearing Voices Groups mean in your life. The amount of time you spend telling that story is up to you. You can write or dictate (voice-to-text) as much or as little as you like. If you don’t want to respond to a question, just leave it blank. Hearing your story is very important to us so questions that invite you to reflect on and describe parts of your experience may take more time. The 1st and 2nd sections of this questionnaire have questions like these. We’ll also ask some background questions and they can be found in the last section. Some people move quickly through them but others will find that there are stories to be told there, too. Either way, there are always options for you to explain things in your own words if our suggestions don’t seem right to you.
There are 18 questions in total, several are header questions with sub-questions associated with them. You can take a break at any time from filling in the questionnaire; just press ‘Save to Continue Later’ and then ‘Log out’ or navigate to another part of the site. You can rejoin your questionnaire whenever you like by signing in with your username and password.
What happens after I’ve agreed to complete a questionnaire?
At the bottom of this Information Page, you will be prompted to read and submit the Consent Form. Completing the Consent Form involves providing your name, an email address, and a password. You will use this email address and password each time you want to access the questionnaire from the homepage as a ‘current participant’. Once you have completed all of your responses, you can make your submission electronically to the research team by checking the relevant box and clicking the “send to research team” button.
The experiences you contribute will help to inform our research team about what you think are important parts of hearing voices groups and what was most meaningful for you. These insights combined with those of other participants will help inform any “action” that comes from this research, including academic books, papers and conference presentations, further exploration of more questions that surface during this phase of the research, other ways for groups to describe themselves and how they exist in their broader communities (like written, photo journal, art or theater projects) or organized “calls to action” to raise awareness, educate, or change policy. Becoming an involved part of the community growing up around this project at OurVoicesRaised.org is a great way to be “in-the-know” and ready to become involved in what emerges from this work.
What if I'd prefer filling out a printed copy of the questionnaire?
You're welcome to request a printed survey packet. We have put a lot of effort into making the online questionnaire as easy and safe as possible, so please take a look at it before deciding. You can save your work part-way through and continue the online questionnaire later. We've even implemented voice-to-text functionality for dictating your responses directly into the questionnaire! (Currently only available on the Chrome browser for desktop and mobile devices, but we're working to add support for other browsers, too.) For most people, the online survey will be the quickest and simplest way of participating in the survey, so please consider that.
If you would prefer to complete the questionnaire in printed form, please contact us and request a survey packet for yourself. If several members of your Hearing Voices group would prefer the questionnaire in printed form, feel free to request a packet for your group. Just list the number of people who want the printed questionnaire.
What about my privacy and confidentiality?
The research team will keep your personal information strictly confidential. The Consent Form will be stored separately from the Questionnaire. Should you offer your name and personal details for a follow-up interview, they, too, will be stored securely and will not appear in any reports or publications that result from our research. The questionnaires will be seen only by the research team.
The responses you provide may be used in published writings in academic journals, articles, books, conference presentations or other project activities, but when direct quotations are offered to help illustrate a point or stimulate discussion, we will ensure that people are not personally identifiable (for example, any identifying names, places and institutions will be changed or edited out).
The final section of the Questionnaire asks whether you’d like to be involved in a follow-up interview that may be carried out with a subset of participants. We would do this by asking further questions sent by email or arrange a phone call. If this is something you’d be interested in, please check the box and add your name and email address. Otherwise, just leave it blank. The final section and the Consent Form will be kept separate from the questionnaire and linked only through an anonymous ID number.
If you have any concerns or questions about your privacy, then do not hesitate to contact us.
Are there any risks involved in taking part?
It is possible that in reflecting on and describing your experience you may experience negative emotions and feelings. If you feel yourself becoming overly distressed, we recommend that you stop filling in the questionnaire. You may choose to withdraw your participation by pressing the ‘Delete My Entire Questionnaire’ button. If you need additional support, touch base with your group or its membership, if possible, or other people in your support network. You are also welcome to reach out to us.
If I agree to answer a questionnaire now, can I change my mind?
Participation is voluntary and you are free to stop completing the questionnaire at any time. Simply press the ‘delete my entire entry and registration’ button and everything will be erased. You are free to return another time to complete the questionnaire by submitting a new Consent Form and submitting your questionnaire responses.
Who developed this questionnaire?
The questionnaire has been developed by this research team with additional input from the voice hearing community and the Critical Participatory Action Research institute.
Who is organizing and funding the research behind this questionnaire?
The funding for this project comes from the Foundation for Excellence in Mental Health Care, Hearing Voices Research and Development Fund. www.mentalhealthexcellence.org
Who has reviewed the questionnaire?
The questionnaire has been reviewed by the Mount Holyoke College Institutional Review Board, Mount Holyoke College, South Hadley, Massachusetts, 01075
How can I reach out to the research team?
Should you have further questions or need assistance, please contact the research team using our contact page.