My name is Kerry Gillespie and I am a PhD researcher at the University of Glasgow. You are being invited to take part in this research study. Before you decide whether to take part or not, it is important to understand why the research is being carried out and what your participation will involve. Please read the following information carefully.
The purpose of the study
This research aims to investigate the everyday experiences of those living with a temporary or permanent ‘facial difference’ (any condition or characteristic that alters the appearance of the face, e.g. hair loss from eyebrows, genetic facial difference, facial burns or scars). I would like to learn more about aspects of everyday life for those living with a facial difference, and the research also focuses on the services or organisations that provide 'treatment' or support to those affected.
How can I participate?
The following survey contains a range of questions focusing largely on the following topics: personal history of visible difference/facial appearance, everyday experiences of living with a facial difference, and experiences of seeking support/treatment. You are asked to complete the survey by selecting from a mix of pre-set answers and ‘free text’ options (for you to write your own answer). Please feel able to write as much or as little as you want. If there are questions that you would prefer not to answer, that is absolutely fine: just leave them blank.
There is then space at the end of the survey for you to leave your contact details to indicate if you wish to be involved in a follow-up interview from the survey. The interview would be an informal chat - discussing the topics covered in the survey in a conversational manner. More information about this is provided at the end of the survey.
What will happen to the information provided?
This project has been reviewed by, and received ethical clearance through, the University of Glasgow College of Science and Engineering Research Ethics Committee. I follow the University of Glasgow’s policy on data protection.
The contributions to this project are anonymous and confidential. Pseudonyms will be used and anything potentially identifying an individual will not be included in any write-ups of the research. The materials generated from responses will be stored in a password-protected computer, accessed only by myself, but the data may be shared with my supervisors. Material will be safely stored in an anonymised form and then destroyed ten years after completion of the research.
The research project will be completed by December 2022 and submitted as a PhD thesis to the School of Geographical and Earth Sciences at the University of Glasgow. Other outputs from this research may include journal articles or public reports for relevant organisations. Data used within these outputs will be kept anonymised at all times, where no details that could identify you will be included.
What are my rights?
By fully completing the survey, you will be giving your consent to your answers being used for this research. You can withdraw from the survey before the point of submission by exiting the survey - your answers will not be saved. Your participation in this research is entirely voluntary. Please note that you must be 18 years or over to complete this survey.
What if I have any questions?
Thank you for taking the time to read this information and please do not hesitate to contact me at: k.gillespie.1@research.gla.ac.uk for further information. You can also contact my supervisor Professor Hester Parr at: Hester.Parr@glasgow.ac.uk for further information if you have concerns about this project.