Caregiver perceptions and attitudes associated with oral immunotherapy on social media

Abstract

Background: Caregiver values and preferences with regard to oral immunotherapy (OIT) for treatment of food allergies are not widely reported. Understanding caregiver perspectives is integral to establishing shared decision-making in the treatment of food allergy. Objective: We aimed to understand caregiver opinions that may influence caregivers in their decisions about OIT through social media. Methods: We searched a popular parenting web site for posts related to OIT from December 2008 to September 2019. We applied a Preferred Reporting Items for Systematic Reviews and Meta-Analyses framework to review posts for inclusion, performed thematic content analysis to determine common themes, and calculated frequencies for each theme and subtheme. Posts and comments were included if they contained discussions about OIT for immunoglobulin E‐mediated food allergy and were excluded if they were duplicates, comments from an original post from the original user, or comments on a nonrelevant original post. Results: Of 1300 posts and comments retrieved, 174 were included (13%). Most were excluded because they did not directly address OIT for food allergy. Relevant posts could fall into multiple themes and were categorized under three main themes: attitudes (n = 128, “I am scared to do OIT but scared not to!”), logistics (n = 168, “We will be doing this once LO [little one] is a little older”), and questions (n = 32, “How does it work?”). Conclusion: Caregivers communicate with each other through social media, expressing attitudes, logistics, and questions about OIT. Understanding these lay perspectives may help guide clinicians in counseling and engage caregivers in decision-making.