Conversion Disorder/Functional Neurological Disorder and agency

RESEARCH STUDY INFORMATION


Information about research project:


 Exploring how individuals who experience phenomena that have been described as ‘Conversion Disorder’ experience agency in their lives


being carried out by:

Danielle Phoenix

as a requirement for a DCPsych in Counselling Psychology and Psychotherapy

from NSPC and Middlesex University

 


You are being invited to take part in a research study. Before you decide to participate, it is important for you to understand why the research is being done and what it will involve. Please take your time to read the following information carefully, and discuss it with others if you wish. Please ask if there is anything that is not clear or if you would like more information. Take your time to decide whether or not you wish to take part.

 

What is the purpose of the research?

This study is being carried out as part of my studies at NSPC Ltd and Middlesex University. ‘Conversion disorder’ is a term used to describe specific types of bodily and sensory experiences, for example, seizures, disturbed balance, stuttering of speech, double vision, etc. Such experiences can involve feeling a lack of control over what is happening whereby one may feel as though they are no longer the agent of their own actions. The further exploration of how agency is experienced in a wider social and psychological context may serve to increase the understanding for both individuals and medical professionals. My study is designed to see how agency is experienced for individuals who have experiences described as ‘conversion disorder’. You are being asked to participate because you have replied to my advertisement for i) males who speak fluent English, ii) are 18 years old and above, iii) experience phenomena that have been described as ‘conversion disorder’, and iv) are able to read and understand the consent form as well as to participate in in-depth interviews. If however, you are i) a child, ii) an adult with a learning disability or dementia, iii) are currently self-harming and/or are suicidal, iv) have experienced a recent bereavement, or v) are intoxicated by a substance, you will be asked to refrain from participating in this research.

 

What will happen to me if I take part?

I would like to initially have a brief conversation with you to see if this research is something that you may be interested in participating in and if so, then we could proceed to make an arrangement to meet so that you can undergo a single interview at a location that is convenient for us both, for example, a library or therapy room that has been hired out. The interview will last approximately one hour and will be audio-recorded. Should the interview take place over Skype it will be agreed beforehand that this take place in a suitable setting where confidentiality cannot be breached and no disturbances will take place. A qualitative research method approach called ‘interpretative phenomenological analysis’ will be used whereby your data will be analysed alongside other participants in order to discover how you experience agency and what it means for you to experience phenomena of ‘conversion disorder’.

 

What will you do with the information that I provide?

I will personally transcribe the audio recording and use a pseudo-name in place of your real name in order to ensure anonymity. I will transfer the files from the digital recorder to an encrypted computer and delete the files from the recorder. Any information that you provide me will be identified only with a project code and stored either on an encrypted USB stick or in a locked filing cabinet. I will keep the key that links your details with the project code in a locked filing cabinet.

 

For Skype-based interviews, I will carry out the necessary precautions to ensure that my private location will remain private at all times. It is important that you make the same arrangement for your own private location so as to ensure your privacy and any interruptions in the interview.

 

The information will be kept at least until 6 months after I graduate, and will be treated as confidential.  If my research is published, I will make sure that neither your name nor other identifying details are used.

 

Data will be stored according to the Data Protection Act and the Freedom of Information Act.

 

What are the possible disadvantages of taking part?

In the interview I will ask you about your experience of phenomena described as ‘conversion disorder’ and your experience of agency (which is the extent to which you feel as though you are the agent of/in control of your life/world) involving this and other areas your life. However, talking about personal experiences may be distressing. If so, please let me know, and if you wish, I will stop the interview. Although this is very unlikely, should you tell me something that is required by law to pass on to a third person, (for example, child abuse, terrorism, money laundering), I will have to do so. Otherwise whatever you tell me will be confidential.

 

What are the possible benefits of taking part?

Being interviewed about your experience of phenomena described as ‘conversion disorder’ and agency has no direct benefit, either, although some people may find it an opportunity to reflect and could find this in itself beneficial. Should the research findings enhance the understanding of individuals and professionals involved so as to enable better communication, support and overall quality of life; this would provide a possible benefit of taking part in the study.

 

Consent

You will be given a copy of this information sheet for your personal records, and if you agree to take part, you will be asked to sign the attached consent form before the study begins. 

 

Participation in this research is entirely voluntary.  You do not have to take part if you do not want to. If you decide to take part you may withdraw at any time without giving a reason and your data will be immediately destroyed.

 

Who is organising and funding the research?

The research is an entirely self-funded study.

 

Who has reviewed the study?

 

All proposals for research using human participants are reviewed by an Ethics Committee before they can proceed. The NSPC research ethics sub-committee have approved this study

 

Expenses

If there are travel expenses, these will be fully reimbursed.  

 

If you are interested in participating then please do not hesitate to contact me:

Danielle Phoenix 

rescd123@gmail.com

Subpages (1): Untitled