Developing a food allergy curriculum for parents

Abstract

BACKGROUND: Food allergy (FA) is potentially severe and requires intensive education to master allergen avoidance and emergency care. There is evidence suggesting the need for a comprehensive curriculum for food allergic families. METHODS: This paper describes the results of focus groups conducted to guide the development of a curriculum for parents of food allergic children. The focus groups were conducted using standard methodology with experienced parents of food allergic children. RESULTS: Participants were parents (n = 36) with experience managing FA recruited from allergy clinics at two academic centers. Topics identified by parents as key for successful management included as expected: (i) early signs/symptoms, (ii) 'cross-contamination', (iii) label-reading, (iv) self-injectable epinephrine; and (v) becoming a teacher and advocate. Participants also recommended developing a 'one page-road map' to the information, and to provide the information early and be timed according to developmental stages/needs. Suggested first points for curriculum dissemination were emergency rooms, obstetrician and pediatrician offices. Participants also recommended targeting pediatricians, emergency physicians, school personnel, and the community-at-large in educational efforts. Parents often sought FA information from non-medical sources such as the Internet and support groups. These resources were also accessed to find ways to cope with stress. Paradoxically, difficulties gaining access to resources and uncertainty regarding reliability of the information added to the stress experience. DISCUSSION: Based on reports from experienced parents of food allergic children, newly diagnosed parents could benefit from a comprehensive FA management curriculum. Improving access to clear and concise educational materials would likely reduce stress/anxiety and improve quality of life.