Participate in an online research study?

Dear Friends,
I've just received the following invitation from Sarah Williams, a PhD student in the UK who is looking for people who have recovered from anorexia to participate in an online research study looking at experiences and opinions of anorexia and its treatment. If you are over 18 and meet her other criteria, perhaps you would like to lend her your thoughts?  If you have a website or blog, please help spread the word!

The rest of this blog is from Sarah, so read on.

And always, be well!
Aimee

"My name is Sarah Williams and I am conducting research at Queen Margaret University in Edinburgh looking at people’s understandings of anorexia and I would like to hear about your views and experiences.

As part of this study I will be conducting an online focus group with those that have recovered from anorexia. The online focus group takes the form of a private discussion board and will give you an opportunity to talk about your experiences and feelings towards anorexia with others who feel the same and are in the same situation.

Below I have provided some questions and answers that will further inform you about the study. However, if you have any other questions about the research then please do not hesitate to contact me at swilliams@qmu.ac.uk.

How does the online focus group work?

The online focus group will work in the same way as a private discussion board. I will post discussion topics at regular intervals for everybody in the focus group to discuss and get involved in. You are not limited to answering the questions I post up and are more than welcome to introduce your own topics to the group as long as it is relevant to the subjects of anorexia, recovery and treatment.

Will the information I give remain anonymous and confidential?

Yes. As the online focus group takes the form of a private discussion board only participant members and I will be able to gain access. All the information that you give in the discussion boards will be anonymous to other users of the site. When you agree to participate you will be asked to choose a username, which you will then use to log onto the site. Every time you post a message on the board it is this username that will show up.

At the end of the four-week focus group the discussions will be downloaded and analysed for the purpose of this study. This research may be published in a journal and may use quotes taken from your posts, however, this will not include any defining characteristics (e.g. name, e-mail address, username etc) if any of these do occur in the quotes used these will be censored or left out.

What will be the focus of the discussion topics?

Discussion topics will be based on your experiences and opinions of anorexia, your experiences of recovery and your opinions about treatment interventions.

Am I eligible to take part in the study?

You are eligible to take part if you meet the following criteria:

• You are 18 years old or over

• You have access to the internet

• You have recovered from anorexia

So, what am I being asked to do?

Once you have read the information sheet and decided that you wish to take part you need to e-mail (swilliams@qmuc.ac.uk). When I have received your consent form I will e-mail you three quick questionnaires which will ask you for some background information about yourself, your anorexic behaviours and your mood. Once I have received your questionnaires I will begin setting an account up for you to access the discussion board.

On the first day of the focus group I will send you information about logging into the focus group discussion board; this will include a password which you will need to use when you log in for the first time. On your first visit you will be asked to change this password to something that only you will know and remember.

On the first day there will already be a couple of discussion topics posted up for you to get involved with. New topics will be posted on the discussion board every couple of days. You are advised to log onto the focus group site at least three times a week to keep updated with the discussions that are taking place and contribute to any new discussion topics. Near the end of the focus group I will post a summary of the discussions that have occurred and will ask you to verify that my interpretation is correct and to add any other comments that you think are important or that I have missed out, therefore you are specifically encouraged to log onto the site near the end of the study.

The focus group will last for a period of four weeks. It will begin on the 12^th November 2007 and will end around the 9^th December 2007.

Are there any rules to using the online focus groups?

The purpose of the focus group is to discuss your views and experiences about anorexia, recovery and treatment therefore you are invited to speak openly and freely about your opinions of these subjects. However, I must stress here, that triggering information is prohibited on this site. Please don’t give out any advice that others may use to maintain their anorexic behaviours further. This includes (but is not exclusive to) tips on diets, exercise regimes, laxatives, diet pills, and diuretics. Any posts with such advice will be edited or censored and the person’s access to the site will be stopped. I have a responsibility as a researcher to ensure that participation in the study does not lead anyone to any kind of harm.

How will I benefit from participating in the study?

There are many benefits to participating in this research, not only will you have the opportunity to talk to others in the same situation as you, but the information that you provide in the focus groups can be used to aid people’s understandings of anorexia. As someone who has experienced anorexia, you are an expert and this is why I would like to hear your views.

Are there any risks to participating in the study?

There are no known risks with using online focus groups. However because of the focus of the study (meanings and experiences of anorexia) some discussion topics may be considered sensitive and personal. You are not obliged to contribute to every discussion topic and if there is a discussion topic that you wish to contribute to but you would rather do that away from the group then you are welcome to e-mail me your contribution instead. Similarly you are free to withdraw from the study at any time without having to give a reason, in this situation simply send me an e-mail with the sentence ‘I withdraw from this study’ in the subject box.

The study will take the form of an online focus group held on a private and confidential discussion board where you can meet with likeminded people in a similar situation to you and discuss your experiences and opinions of anorexia and recovery.

The online focus group lasts for four weeks and participants are asked to log in a few times a week to keep up to date with discussions and add their contributions. One of the good things about the project is that people can log in and get involved in the discussions at a time and place that is most convenient for them. I have updated my myspace site http://www.myspace.com/understandinganorexia with details about the study so that people can visit it to read about the project. I am afraid that I can't provide a link to the study site as, for ethical reasons, people need to be registered participants first."