September 2016
The experiences of eating and drinking for people with Epidermolysis Bullosa; the perspectives of parents of children with EB, and adults with EB
This study has been approved by the UCL Research Ethics Committee Project ID Number: 9213/002
Project Leader:
Dr Christina Smith, Senior Lecturer
Division of Psychology and Language Sciences
Student Researcher:
Chloe Selby, Masters of Research Student
Division of Psychology and Language Sciences
Participant Information
What questions is this research asking?
How do parents of children under the age of 18 with Epidermolysis Bullosa (EB) observe and experience the eating and drinking difficulties of their children? How do adults with Epidermolysis Bullosa experience and describe eating and drinking difficulties? What health and care-based support have both groups received around eating and drinking difficulties specifically?
What is the aim of the project?
We would like to understand the experiences of adults with EB, and parents of children with EB, around meal times. This information will help us to document your experiences, and then ask more research questions in the future, which, in the long term, will aim to improve your experience of eating and drinking (or your child’s), and to get the most helpful support in this area.
How will you gather the information you need?
If you consent to join this project, Chloe Selby, Speech and Language Therapist, will arrange to interview you, via telephone or Skype, at your convenience. If you are an adult with EB, you can take part in the interview directly, and/or you can complete the interview between you and a family member, friend or carer. If you are the parent of a child under 18 with EB, we will ask you to participate without your child being present.
The interview will last between 45 and 75 minutes, and will be audio recorded. We would like to collect the information that you feel is most important to tell us about eating and drinking, but we have come up with some questions as a guide. You can see these on the attached sheet titled “Interview Questions”.
The audio recording of the interview will be stored in a locked cabinet at UCL, with a code name, so that your details remain anonymous. At the end of the research, the audio recordings will be destroyed.
The answers you gave in the interview will be analysed to see if there are themes around eating and drinking which you share with other children and adults who have EB. We hope to then share the findings of this research through publication (in an academic journal), and presenting at relevant conferences.
You are welcome to have a copy of the research report when it is finished if you would like one. Just let Chloe during the interview, or via email.
When will the interview take place?
The interviews will take place between September 2016 and September 2017.
If I give consent, am I able to change my mind?
This study is entirely voluntary, and you can withdraw at any time. Any data you have provided to the research study will be disposed of securely.
Can I take part if I have, or my child has, a feeding tube?
Yes. We are interested in gathering information about all eating and drinking you do, or used to do, and how you balance tube feeding and oral eating and drinking.
Does it matter if I have never had Speech and Language Therapy support? Or, if I have had lots?
No. We are interested in gathering any and all the experiences around eating and drinking for people with EB.
I don’t live in the United Kingdom. Can I take part?
For this study, we are focusing on the experiences of children and adults who live in the UK with EB, so unfortunately, we won’t be able to interview you at this time. Please let us know if you are happy for us to keep your contact details, so we can invite you to join in any future research.
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Please discuss the information above with others if you wish or ask us if there is anything that is not clear or if you would like more information.
It is up to you to decide whether to take part or not; choosing not to take part will not disadvantage you in any way. If you do decide to take part you are still free to withdraw at any time and without giving a reason.
All data will be collected and stored in accordance with the Data Protection Act 1998.
Thank you for reading this information sheet and for considering participating in this research.