What are the challenges of developing independence and supporting the quality of life of adult males affected by Fragile X Syndrome?
I am looking for individuals to take part in my study focused on the experiences of adult males with Fragile X Syndrome, specifically exploring the challenges and barriers to achieving independence in adulthood.
While existing research predominantly addresses the experiences of children and adolescents with Fragile X Syndrome, there is a significant gap in understanding the lives of adults. This study aims to provide valuable insights into the lived experiences of adult males with Fragile X Syndrome, with the goal of identifying strategies to enhance their independence and quality of life. Your participation could in turn provide critical information that could be used to improve support and interventions from health and social care systems in the future.
Recruitment criteria:
You can take part in this study if you are over the age of 18 years and are the parent or carer of an adult male with Fragile X Syndrome (also over the age of 18 years). You must be able to speak and understand English and have the capacity to consent and take part in research. You must not be pregnant nor be a current staff member or student from Cardiff University.
What do I have to do?
If you decide to take part in this study, you will sign a consent form which will be stored securely at Cardiff University. You will be allowed to discuss the study with me and ask any questions you may have before deciding whether to participate.
The study involves taking part in an interview, where you will be asked questions about an adult male’s experiences of Fragile X Syndrome and the challenges that pertain to independence in adulthood, what you believe would improve independence in adulthood and what would improve the general wellbeing and quality of life for men with Fragile X Syndrome.
The interview will be conducted through a Microsoft Teams Call, which will include or exclude video depending on your preference and will last approximately 45 minutes. All interviews will be audio recorded and stored securely on a password-protected computer.
Following the interview, you will have the opportunity to express how you found the interview and ask any additional questions you have.
If you are interested in taking part in this research, please contact me by email at: durberkl@cardiff.ac.uk