ABSTRACT
Introduction: Currently, the only treatment for celiac disease (CD) is a lifelong stringent gluten-free diet (GFD), which has a very high perceived treatment burden. COVID-19, a global pandemic, caused most of the population to stay at home and limit outside contact. The study aimed to capture the impact of COVID-19 on the quality of life of children with CD and their families. Method(s): Semi-structured interviews were conducted and analyzed using a phenomenology approach between May 19th and August 3rd, 2020 with 15 children and parents of children with CD. All interviews were recorded and transcribed;study staff coded transcripts individually, meeting at scheduled intervals to discuss discrepancies before proceeding with the next transcript. Result(s): Based on the interviews with children with CD and their parents, five unique themes emerged including: access to gluten free (GF) food, access to care through telehealth, perceived vulnerability to COVID-19, avoiding gluten exposure and emotional responses. Among the five themes, there were twelve subthemes that were developed to showcase the full experience of a child with CD and their parents' experience with COVID-19. Conclusion(s): Our cohort experienced similar circumstances caused by the pandemic when compared to the general public, with notable exceptions. Both populations took strict safety precautions, but our cohort experienced additional layers of stress related to access to safe food and perceived additional vulnerabilities to COVID-19. These findings emphasize the importance of proactively supporting CD management and its challenges through the end of the pandemic and beyond.