Gabriella: I want to introduce Altea Kthupi, a student at the University of Waterloo in Canada who is doing her thesis on PANDAS. Can you tell us a little bit about the study you are doing for your thesis?
Altea: I’m doing my thesis on PANS/PANDAS to shed light on the experiences of mothers with children suffering from this condition. I am working under the supervision of a psychiatrist and the associate director of my faculty (Health Sciences). I know that caregiver burden is huge on parents with children with PANS/PANDAS, so I thought maybe by interviewing some parents, I would be able to see common struggles and make them known in the literature. My research has received ethics clearance from the university, and I just need assistance with recruiting parents that would be willing to share their experiences with me through a brief interview. So I will to assess the challenges faced by caregivers as they navigate the health care system in obtaining a correct diagnosis and suitable treatment plan for PANDAS and shed light on the lived experiences of patients’ caregivers by responding to the following research questions.
Gabriella: How long will participation in the study take?
Altea: As a participant in this study, you would be asked to take part in an interview that will take approximately 30 minutes to an hour. You will engage in an open dialogue and answer a number of questions which will focus on your lived experience since your child’s PANDAS diagnosis, including access to treatment and changes in your family dynamic.
Gabriella: Do you have any age requirements? Can you interview caregivers at any stage of their journey, whether it be just starting out, post-recovery, or still battling this disorder?
Altea: The selection criteria for this study do not limit me to a particular stage, so I’m open to all stages. I am also willing to interview mothers of children who have either a PANS or PANDAS diagnosis.
For More Information on Caregiver Experience in PANS/PANDAS Study and How to Enroll.