Wellbeing Toolkit for EB Parents Are you a parent of a child with EB? There can be a lot of pressures on parents looking after a child with EB, including being responsible for frequent dressing changes, and worry about the future. In collaboration with DEBRA UK, Professor Andrew Thompson and the team at Cardiff University are looking to create a ‘toolkit’ to support the psychological well-being of parents caring for a child with EB. They are looking at the relationship between some specific psychological variables including mindfulness, and parent and child quality of life/psychological well-being. They want to identify factors that might be useful to build into support that could be helpful for families affected by EB. To create this toolkit, they need your help! Project information How to be involved There will be two different ways to be involved, either by completing the online survey, or joining a focus group. Online survey We are looking for parents who have children with EB aged between 4 - 16 years old to complete an online survey, and are also asking children to complete a shorter survey. The aim is to identify factors that might be useful to build into support that could be helpful for families affected by EB. The survey should take around 30 - 45 minutes to complete and is split into two parts, with the questionnaire for parents presented first, followed by the section for children, all on the same survey. Child participants will only be eligible to take part if their parent is also participating. Parents taking part will be asked to complete this survey at a different timepoint and be recontacted in six months time. This will enable the researchers to conduct more robust assessment of the way the variables within the questionnaire relate to one another. To thank you for your participation, there will be an opportunity to be entered into a prize draw to win a £50 Love2Shop voucher on completion of this research! Take the survey Focus groups The team will also be holding a series of focus groups online with parent / carers who have, or have had children with EB, and also with healthcare professionals. The purpose of holding these group sessions is to gather feedback as to what would be helpful to include in a ‘toolkit’ self-help resource for parents. In order to make sure the toolkit is relevant, they will be asking a series of questions as part of a group discussion. These will take place via zoom, and they will run for approximately 1.5 hours. To thank you for your involvement and contributions you will be given a £25 Love2Shop voucher, which will be sent to you via email following completion in the focus group interviews. To sign up, please email Olivia Hughes directly: [email protected]. and she will send you all of the information. If you are a parent/carer, or have been a parent/carer of a child with EB: This will be an open discussion about your experiences of caring for a child with EB, with 6 - 8 other member parents. The discussion will cover areas including: The types of psychological support you might find helpful What preferences you might have in terms of format and delivery Your suggestions on what is important to include in future support resources You will also be shown examples of existing self-help resources or ‘toolkits’ and asked to provide feedback on what you like/dislike about the content and design If you are a healthcare professional: This will be an open discussion about your experience of working clinically with families affected by EB, with 6 - 8 other healthcare professionals. The discussion will cover areas including: How we can support the psychological well-being of parents caring for children with EB What techniques/approaches you think could be usefully applied Preferences in terms of format and delivery Prior to the discussion, you will be asked to email examples of support materials you use to support EB patients To sign up, please email Olivia Hughes directly: [email protected]. and she will send you all of the information. Manage Cookie Preferences