Watch: Eating, drinking and swallowing difficulties in OA/TOF
February 1, 2024
Help to improve understanding of feeding issues experienced by those born with OA/TOF
What is SaFE and who is involved?
SaFE is a PhD project being carried out by Alexandra Stewart, a speech and language therapist, alongside a team of researchers at Great Ormond Street Hospital and University College London. The aim is to better understand the swallowing and feeding difficulties that children born with OA and/or TOF experience. This part of the project aims to understand how these feeding and swallowing difficulties impact on parents or carers. Given the extraordinary times we are currently experiencing, we thought it would also be useful to explore the impact that the COVID-19 pandemic is having on those affected by OA/TOF.
What would I be doing if I take part?
We will use a forum on Facebook to gather some preliminary information from parents and carers about their experiences of feeding their child. This information will be used to develop a questionnaire that will further explore these issues. Participants for the questionnaire part of the research will be recruited separately. We will also ask you about the impact that OA/TOF-related issues relating to the COVID -19 pandemic have had on you and your child.
We have developed a set of questions, in collaboration with a project steering group, which you are invited to answer. This is a discussion forum so you are encouraged to read other people’s responses and think about whether this has also been your experience or how your experience was different. There are no right or wrong answers. We are very interested in everybody’s opinion. It does not matter if your experience is the same or different to other people. You do not have to answer all the questions. You can post multiple responses to each question. You can give as much or as little information as you wish.
If you do not wish to take part in the Facebook forum you can answer the questions by email, by emailing safestudy.tof.oa@gmail.com.
In order to take part you will need to provide some basic information about yourself: your child’s age and the type of OA/TOF he or she child has, your gender, your relationship to the child with OA/TOF, the general area that you live and your ethnicity (if you know). This is to make sure that we understand who has taken part in the research. This information will not be linked to your responses.
The latest updates to this project will be shown here as they are published.
How is the forum being managed?
The discussion group will be moderated by one of the TOFS Charity Facebook Group moderators. They will accept new participants to the forum, pose questions and ensure that any posts are appropriate. Offensive or inappropriate posts will be removed and the poster asked to repost in an appropriate manner. The moderator may remove a participant who makes repeated offensive posts.
How is the information I provide going to be used?
The moderator will anonymise all the posts and send a transcript to the research team for analysis. The results of the study will be published and shared with professionals, for example, at conferences and in journals. Results will also be summarised and shared with parents, for example in the TOFS newsletter. The results of the study will be reported for the forum discussion as a whole and no individual will be identified in any report or publication. However, individual quotes may be used anonymously.
The information will be used by the SaFE project team to design a questionnaire so that we can explore the impact on parents and carers in greater depth. We hope that this information will help professionals and others supporting people effected by OA/TOF provide the most useful support and deliver effective services.
How will my data be kept safe?
We ask that you do not share the name of your child or any other individual involved in your child’s care. Please do not share any photographs on this forum.
As the forum will be run through Facebook, you will post responses using your name (or Facebook name). This personally identifiable information with only be visible to other forum participants and the forum moderator. Your anonymised demographic information and responses will be sent to the research team and stored on a password protected computer or encrypted USB drive. Your information will not be shared with anyone else. The Facebook group will be a closed (private) group and access will be granted by the moderator. The research team will not have access to the forum group. The group will be archived after the transcripts have been received by the research team. The anonymised transcripts will be kept for 5 years after the end of the project.
Who is funding this project?
SaFE is being funded by the National Institute for Health Research. It has been reviewed and approved by the Central London Ethics committee.
Any questions?
If you have any questions please contact the lead researcher, Alex Stewart, on alex.stewart@gosh.nhs.uk.
If you want to take part please click on this link: https://www.facebook.com/groups/safestudy.onlineforum. You will be asked to complete some demographic questions. You will then be granted access to the forum by the moderator. You are free to stop taking part at any time.
