“Hello! My name is Usree Bhattacharya and I am mom to a 5-year-old girl, Kalika, with Rett syndrome, and a faculty member in the College of Education at the University of Georgia (US).
My training and expertise is in language and literacy socialization, and since my daughter’s diagnosis in 2018, I have been conducting ethnographic research with my daughter in this area. I direct a communication-focused Rett lab, with 2 PhD advisees, 2 MA students, and 1 undergraduate student.
We recently wrapped up a study that examines how Kalika uses her eye-tracking AAC device for conveying health and medical information. Inspired by this work, we’re interested in expanding beyond just my daughter, and looking to learn from others. We’re hoping to recruit 20 participant families for this VIRTUAL study. It would entail a one half-hour interview, photos of pagesets your daughter uses for conveying health/medical information, and some short video you would collect to show us how your daughter uses the device for this purpose.
We are also recruiting 20 therapists and physicians to interview for this study. I am excited to spearhead this project because I know only too well how important this kind of information is for us. Unfortunately, this is a huge area of neglect in the scholarly literature. I would LOVE your help in better understanding this, so that our girls’ abilities to advocate for themselves from a health and medical perspective is recognized.
Unfortunately, we have no funding for this right now so I would need your goodwill for participation. Thank you for reading and I hope you will consider participating in this study! The link (http://tinyurl.com/rettaacmed) will take you to a VERY short survey that will decide eligibility criteria and then the team will contact you with consent forms. Happy to answer any and all questions. THANK YOU! http://tinyurl.com/rettaacmed (Please note that the study protocol is written up for girls/women with Rett syndrome who are 5+.
If there are caregivers with boys with Rett syndrome who are interested, I am happy to revise the protocol. We do not mean to specifically exclude them). We have a very international Lab, so we can support and interview in multiple languages (English, Bengali, Hindi, Spanish, Indonesian, Mandarin.”