Exploring the experience of receiving the label of ‘treatment resistant schizophrenia’

 

 

PARTICIPANT INFORMATION SHEET

 

You are being invited to participate in a research study. Before you agree it is important that you understand what your participation would involve. Please take time to read the following information carefully. 

 

Who am I?

I am a postgraduate student in the School of Psychology at the University of East London and am studying for a Professional Doctorate in Clinical Psychology. As part of my studies I am conducting the research you are being invited to participate in.

 

What is the research?

I would like to understand what it is like to have been given the label of ‘treatment resistant schizophrenia'.  My research has been approved by the School of Psychology Research Ethics Committee. This means that the Committee’s evaluation of this ethics application has been guided by the standards of research ethics set by the British Psychological Society.

 

Why have you been asked to participate?

You have been invited to participate in my research as someone who fits the criteria I am looking for to help me explore my research topic. I am looking to interview people who have received the label of ‘treatment resistant schizophrenia’ at any point in their life, or who have been given a diagnosis of schizophrenia and been told that their experiences are ‘resistant to treatment’. You must be over 18 years old to participate and live in the United Kingdom.  As the interview will be online you will need to have access to the internet on a computer, smartphone or other device. 

 

I emphasise that I am not looking for ‘experts’ on the topic I am studying. You will not be judged or personally analysed in any way and you will be treated with respect. You are quite free to decide whether or not to participate and should not feel coerced.

 

What risks and benefits are there?

It is hoped your participation in the study will help to address a gap in research around the experiences of people who have been labelled in such a way. There may be some risks in that discussing experiences may be distressing for participants dependant on how they have experienced the label.

 

What will your participation involve?

If you agree to participate you will be asked to take part in an online interview with me about your experiences and the effect of this label on your life. 

 

Your taking part will be safe and confidential

Your privacy and safety will be respected at all times. The interview will be recorded on a digital recording device which only the researcher will listen to.  I will type up a transcript of the interview but I will change any names and other information which might identify you.   

 

What will happen to the information that you provide?

Any personal contact details or personal data collected in the process of the study will be stored on a password protected computer file (UEL OneDrive).The interview will be recorded (so that I do not miss anything you say) and then I will transcribe it (i.e. type it up). However, in the transcript you will be given a pseudonym (i.e. a fictitious name) and no identifying information (your name, other potentially identifying details etc) will be included. Personal details (e.g. your email address) and the transcripts will be stored in password-protected files on a secure and encrypted university storage system (OneDrive). No-one other than my supervisor and I will have access to these and even they will not know your name.

 

When the study is complete, the audio recordings will be deleted. When I write up my thesis, I may use quotes from your interview but you will only be referred to by a pseudonym and nothing that might identify you will be included. The thesis will be publicly accessible in the University of East London’s Institutional Repository (ROAR) but this will not include any information which might identify you. My research supervisor will keep the anonymised transcripts of the interviews for up to 5 years as I may wish to publish the findings of this research. The data gathered for this study will be retained in accordance with the University’s Data Protection Policy

 

What if you want to withdraw?

You are free to withdraw from the research study at any time without explanation, disadvantage or consequence. Separately, you may also request to withdraw your data even after you have participated, provided that this request is made within 3 weeks of the interview (after which point the data analysis will begin, and withdrawal will not be possible).

 

Contact Details

 

If you would like further information about my research or have any questions or concerns, please do not hesitate to contact me: 

Jen Richards (Email: u1945526@uel.ac.uk)

 

If you have any questions or concerns about how the research has been conducted please contact the research supervisor Dave Harper, School of Psychology, University of East London, Water Lane, London E15 4L.  Email: d.harper@uel.ac.uk.  Alternatively you can contact:  Chair of the School of Psychology Research Ethics Sub-committee: Dr Trishna Patel School of Psychology, University of East London, Water Lane, London E15 4LZ. (Email: t.patel@uel.ac.uk)

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