Demanding, but definitely worth it! A mixed-methods study on parental experiences with early-life oral immunotherapy

Abstract

Background: Early oral immunotherapy for food allergy (<3 years of age; eOIT) shows promise for inducing sustained unresponsiveness. However, concerns about its feasibility remain. Parental experiences with eOIT have not yet been studied, but understanding these is crucial for improving its clinical implications. Objective: Assessing the feasibility of eOIT from a parental perspective. Methods: This sequential explanatory mixed-methods study enrolled parents of children from the ORKA study, a prospective intervention study on eOIT for various allergens. Parents completed a baseline anxiety questionnaire, monthly feasibility questionnaires, and daily adherence diaries. After treatment, focus groups were conducted and analyzed using interpretative phenomenological analysis. Results: Parents of 124 children with 189 treated food allergies were included. They reported little anxiety (mean STAI score 32.6 on a scale of 20–80) and high confidence in managing eOIT. Overall, feasibility was assessed positively (mean feasibility score 16.1–23.6 on a scale of 12–60). Adherence was between 96.7% (dose escalation) and 94.7% (maintenance dosing). The participant dropout rate was 9.7%. Focus groups with 10 participants revealed 5 themes: driven by hope, the hidden burden, navigating obstacles, guiding hands, and gratitude in the journey. Parents were motivated by the hope of tolerance development and desire to actively manage the allergy. However, eOIT was emotionally burdensome, especially during initiation and in maintaining adherence. Practical challenges included dose administration. Professional support and expectation management were perceived as essential. Regardless of clinical outcomes, parents viewed the effort as worthwhile. Conclusions: eOIT is feasible from a parental perspective, though emotionally and practically demanding. A family-centered approach with adequate education, practical guidance, and psychosocial support is recommended.