“There's a chance we can overcome”: Parental perceptions on modified desensitization protocol for newly diagnosed toddlers

Abstract

BackgroundOral immunotherapy (OIT) has shifted the food allergy paradigm from strict avoidance to clinical tolerance. Whereas it is most effective when started in very young children, little is known about parental perceptions of OIT. ObjectiveTo qualitatively describe the perceptions of parents whose young children had recently successfully attained maintenance-modified desensitization protocol in Montreal, Canada. MethodsIn March 2022, we qualitatively interviewed 10 families (5 English, 5 French) whose children had successfully attained maintenance OIT. Interviews were completed virtually by means of a single moderator and were audio-recorded and transcribed verbatim. Data were analyzed thematically in the original language of data collection by 2 bilingual analysts who worked independently but concurrently. Analysts met to discuss codes and create themes. Central quotations collected in French were translated into English. ResultsChildren who had completed the protocol were 2.38 (± 3.12) years at diagnosis and 2.94 (± 2.69) years at the start of OIT. Interviews averaged 24 minutes and 38 seconds in duration. A total of 6 themes were identified, including the following: (1) parents were theoretically comfortable with OIT; (2) comfort with OIT does not nullify anxiety; (3) daily challenges of OIT include eating and early reactions; (4) the time invested in OIT is substantial, but worth the reward; (5) OIT means liberation; and (6) greater access to OIT is needed now and in perpetuity. ConclusionDespite substantial time investments and challenges, OIT offers hope to families of children with food allergy and for which parental enthusiasm remains. Significant resources ought to be directed toward OIT now, as downstream outcomes are notable.