Invitation to take part in a study on BIID

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Written by Sean on Thursday, October 26, 2006

I was contacted by a researcher who is doing a study on Body Identity Integrity Disorder. She appears genuine and her credentials check out. This is not a student doing some research paper on BIID, nor a journalist after a sensasionalistic story. It is an honest-to-goodness study that might actually help those of us who are transabled. The researcher asked me to post her request for assistance on transabled.org, and I am pleased to do so.

My name is Melita Giummarra and together with my colleagues at Monash University (Melbourne, Australia) I am conducting a study on BIID. This study will explore the origins and characteristics of BIID, and aims to identify whether there are differences in bodily perception before and after amputation—or achievement of the desired transabled bodily state.

We would like to hear from people who desire amputation, paraplegia or other people from the transabled community who have OR have not achieved their desired body state (amputation/paraplegia/transabled). We are also interested in people who are "devotees" but don’t personally want amputation or to become transabled.

Participation involves electronically completing a questionnaire and returning it to myself via email and may take between 20 minutes and 2 hours to complete, depending on how complex your experiences are!

This research is important for people with BIID and will hopefully give us insight to how you perceive your body differently to other people (and other amputees) and will hopefully also assist in validating BIID as a genuine condition that warrants medical consideration.

If you are interested in taking part, please email me (melita.giummarra [at] med.monash.edu.au) and I will email the questionnaire to you. Please note that your responses to the questionnaire will be "de-identified" when I receive them back from you, and you will remain anonymous (only I will know which questionnaire you completed).

A study on BIID & bodily perception before and following amputation: Explanatory statement

My name is Melita Giummarra and I am conducting a research project on phantom limb sensations and body perception before and after amputation. The results of this study will be written up in my doctoral thesis (being conducted at Monash University, Melbourne), and will also be written up for publication and distribution to the medical community, and the BIID/transabled community through relevant forums.

Study description

We have chosen to study symptoms of BIID and experiences following limb loss as we believe this will provide us with unique insights to how the body is perceived, both before and after amputation. This study is exploring how and why you desire amputation, if and how you have achieved this, and any associated changes in body satisfaction and perception. Essentially we hope that this study will find out whether desire for amputation is associated with inherent differences in body perception that, following amputation, manifests as differences in phantom limb perception compared with traumatic or surgical amputees. While we expect that people with BIID will not experience phantom limb sensations, we expect that there will be differences in how the phantom limb is characterised. The study findings may assist in validating BIID as a condition that warrants medical recognition and serious consideration for appropriate medical intervention.

The study involves answering a series of questions. The questions ask about your general health and well-being, desire for limb loss, phantom limb sensations and pain following limb loss, as well as mood and coping mechanisms, and prosthesis use. Please answer the questions as honestly and completely as you can. It may take a few hours to complete the questionnaire, depending on how much you wish to say about your experiences.

Participation and confidentiality

Being in this study is completely voluntary – you are under no obligation to consent to participation. If you agree to take part in the present study, then please complete the attached questionnaire. If you do decide to participate you may withdraw at any stage or avoid answering questions which you feel are too personal or intrusive.

When you return the questionnaire to the researchers, your responses will be “deidentified” (that is, any identifiable information like your name and email address will be detached from the questionnaire) and you will remain anonymous. Only the researchers will be able to identify which questionnaire you have answered. You will not be identifiable in any publications that result from the research. The data will be stored at the University, in a locked filing cabinet for a minimum of 5 years (University regulations). Please note that by returning the questionnaire to the researchers you have consented to your data being used in the group data, as outlined here.

Results

If you would like to be informed of the aggregate research finding, please indicate this at the end of the questionnaire, and the findings will be distributed via email when the study is completed during 2007.

To volunteer please contact Melita Giummarra (melita.giummarra [at] med.monash.edu.au), and she will send a copy of the questionnaire to you.

[tags]Research, University, BIID, Amputation, Paralysis, Paraplegia, Phantom+Pain, Confidentiality[/tags]

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3 Comments

1 On 27 October, 2006, Claire said:

Thanks for the heads-up, Sean. I’ve e-mailed her to request to take part in the study.

2 On 13 December, 2006, mark van wyk said:

i would like to help in your study as i have suffered this mental torment for the past thirty years and have finaly reached the point of no return, as iam know seriosly considering self amputation as a last resort, my only fear is that i my go into shock and bleed to death, orthopedic surgeons need to understand that by doing an amputation in a safe and controlled enviroment after properly evaluating the patent may be doing the right thing. I have requested this opperation from my own surgion but they flatly refuse and carry on with unessesery tests, THEY DO NOT LISTEN TO THERE PATENTS OR TRY AND UNDERSTAND.

Thanking You and good luck, Mark

3 On 13 December, 2006, Sean said:

Mark, the contact information is in the post above. If you want to participate, use the contact information, your post here will most likely NOT reach the researcher.

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