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Project TitleWhat knowledge and attitudes do restaurateurs have with regard to provision of the Phenylketonuria (PKU) diet; and what are the experiences of people with PKU, and their caregivers, when eating out at restaurants or cafes?

Aims of the study: To gain information from people with Phenylketonuria (PKU) and their caregivers, about their experiences of eating out at restaurants and cafes.  

Research Questions

What are the personal experiences of people with PKU when eating out in restaurants?

Invitation to participate: The purpose of this information sheet is to inform you about the project so that you can decide whether you wish to participate.

Information about the project/Purpose of the project: This study is part of an MSc project about the experience of eating out in restaurants and cafes for PKU patients and/or their caregivers. A questionnaire will be posted on the NSPKU website for people with PKU, or their caregivers, to complete about their previous experiences and feelings when dining out. 

Why have I been chosen? Because you have PKU or you care for a child, or adult, with PKU.

Do I have to take part? You do not need to give any reason if you decide not to take part. Non-participation is entirely your choice and will not have any adverse effects. 

What do I have to do? You will be asked to complete an online questionnaire regarding your/your family past experiences when eating out.

What are the risks associated with this project? I will be collecting data from you regarding your personal/family's experiences, which may be emotional or sensitive to you. 

What are the benefits of taking part? There will be no personal benefits from taking part in this study. However, we do hope it will help raise awareness amongst restaurant managers about the issues that people have with PKU when eating out in a restaurant.

Confidentiality Arrangements: Your consent to participate in this study will be confidential. You will be required to consent electronically prior to starting the questionnaire. 

Individuals who fill out the questionnaire will have their anonymity and identity protected by not providing any identifying personal details. 

Data Protection: Electronic data collected will be securely stored on a Birmingham City University (BCU) One Drive for ten years after the completion of the research project, in compliance with the Birmingham City University Guidelines and Procedures. Physical data will be scanned in and stored electronically on a BCU One Drive for ten years after the completion of the research project, in compliance with the Birmingham City University Guidelines and Procedures. Physical data will then be shredded.

Data will be deleted as soon as it is no longer needed. Data will only be accessed by myself.  

Participants’ rights: You have the right to informed consent, anonymity and data protection. 

You are free to stop taking part in this study until 01/09/2020 and you do not have to give any reason for this. After this date, data will have started to be analysed and is unable to be withdrawn.

Reviewing of the Study: The study has been reviewed by Anita Macdonald and Kiri Pointon-Bell.

Who should you talk to if you have questions? If you have any questions or queries, I (Grace Poole) will be happy to answer them. If I cannot help you, you can speak to Kiri Pointon-Bell

Who should you talk to if you wish to make a complaint?

You can contact the ethics department using HELS_Ethics@bcu.ac.uk

Key contact details 

Grace Poole   

Grace.poole@mail.bcu.ac.uk

Kiri Pointon-Bell

Kiri.pointon-bell@bcu.ac.uk

How to provide informed consent

You will be required to consent electronically prior to beginning the questionnaire.  

All questions are mandatory and an answer is required before progressing to the next question.

You will be provided with a unique receipt code upon completion of this questionnaire, which can be used to identify your data should you wish to withdraw from the study.

I would like to give you the opportunity to take part in my study.