Epilepsy Ireland have received a request from DCU PHD student ,Orla Mooney seeking participants for the Awesme Study - Adolesecents With Epilepsy Self Management Experiences. Orla has outlined the goals of the study below and what is involved for potential participants.
We receive research requests and those that are looking for volunteers can be found in the research section of our website.
If you would like to take part, please contact Orla directly on 0852356674, 017007997 or by emailing email@example.com.
What is this study about?
We are doing this study to find out about adolescents experiences of living with epilepsy and how they manage it themselves. We would like to talk to adolescents and/or parents/caregivers.
If I wish to provide consent for my adolescent to take part?
We would like to speak to adolescents aged 11 up to 18 years and who have a diagnosis of epilepsy for at least 6 months. Please read their information sheet so you are clear what is being asked of them. If you agree to their participation, please sign the informed consent form (parental approval). We will remind them that their participation is their choice (with parental approval). If your adolescent does not wish to take part, you can still take part.
If I decide to take part myself, what will I be asked to do?
We would like to speak to you as a parent of an adolescent aged 11 up to 18 years and who has a diagnosis of epilepsy for at least 6 months. We want to explore and understand epilepsy self-management during adolescence from the views of adolescents themselves and you, their parents/caregivers.
What type of questions will we be asked?
The interview will discuss, your adolescent’s epilepsy how it impacts on their daily life and how it is managed by them and you. The information gathered from the interviews will be used to identify what is most important to adolescents in relation to the self-management of their epilepsy.
How long will it take?
If you agree to take part in this study, you will be asked to choose and take part in an online or a face-to-face interview for approximately 40 – 60 minutes long, depending on how much you wish to speak about. You will have a chance to ask questions before the interview itself.
What if we don’t want to take part?
We understand that not everyone will be interested in or have time to take part in our study. If either or both of you chose not to take part, this will in no way affect your adolescent’s treatment at their hospital.
What are my rights if I join the study?
Participation in the study is entirely voluntary and if you agree to participate you have the following rights:
The information from this study will be kept strictly confidential (you will be assigned a participant code) and this will not be made available to anyone except the research team. Only the research team have access to the coding.
As participation is completely voluntary, you are free to withdraw from the study at any time for any reason without explanation. You are also free to withdraw your data at the end of your participation if you want to.
You have the right to refuse to answer or respond to any question that is asked.
Under the Freedom of Information Act, you can have access to any information we store about you, if requested.Phone: DCU 01-7007997 or 085-2356674