Family experience survey

Family experience survey

Patrizia Omiiccioli's TBRS Thesis
Please feel free to share as much or as little information as you feel comfortable with. Please do not share names or identifiable information. Thank you for your participation.
1. Your Story: Can you tell us about yourself and your family? What is your family like?(Please do not provide names)
2. Diagnosis and Early Experiences: Please share the story of your child’s birth and the journey to discovering their diagnosis. You can include information like: How long did it take to receive a diagnosis of Tatton Brown Rahman Syndrome (TBRS)? What was that process like for your family? How did you come to understand and accept the diagnosis? What kinds of interventions, therapies, or supports did you begin right away? Did you connect with any specialized centers or professionals who work with TBRS?
3. Support Systems in Your Community: Your answer may include some of the following information: What kinds of support are available where you live, both professional services and community support? For example, are there organizations, associations, parent groups, or advocacy groups that you are part of? How have these services or communities supported you and your family? What resources in your area have been most helpful? Please list the country/region that you live in.
4. Planning for Your Child’s Future: Please incorporate some of the following ideas in your answer: How are you thinking about your child’s future and their life path? What goals or hopes do you have for them? What areas of life feel most important to focus on, such as education, independence, social life, or wellbeing? Have you started developing a long-term plan for your child? Who has helped you in thinking about or creating that plan?
5. Barriers and Challenges: Please incorporate some of the following ideas in your answer: What kinds of barriers have you faced as the parent of a child with a rare disease or disability? These might include structural barriers (such as access to services) or social barriers (such as stigma or misunderstanding). Where did you encounter these challenges? What impact did these barriers have on you and your family emotionally? Did anyone help you overcome these challenges? Have you taken steps yourself to break down or address these barriers?
Should be Empty: