Strategies for living with the risk of anaphylaxis in adolescence: qualitative study of young people and their parents.

BackgroundAdolescents with anaphylaxis are at increased risk of fatal outcomes. Gaps in their knowledge of day-to-day and emergency management have been identified. There are also gaps in services available to support adolescents at risk of anaphylaxis.AimsTo explore the experiences and healthcare needs of adolescents living with the risk of anaphylaxis; to understand the perspectives of their parents; and to look at how care might be improved.MethodsA qualitative study was undertaken using in-depth interviews with adolescents with a recent history of severe allergic reactions and with their parents.ResultsTwenty-six adolescents at risk of anaphylaxis living in Scotland and their parents (n=28) were recruited. Most anaphylactic reactions reported by participants appeared to result from accidents, misinformation, or inexperience. For many, management involved finding a balance between taking their allergies seriously whilst not allowing these concerns to dominate their lives. Risks were often difficult to judge, with reactions sometimes taking place even after careful checking of meal ingredients. Most admitted taking some risks with trace-labelled foods. Appropriate healthcare support for adolescents in learning to manage the risk of anaphylaxis independently and advice and support for their parents was inconsistently provided.ConclusionsAdolescents tend to see their risk management strategies as 'good enough', but these strategies were often inconsistent with clinical best practice and, in some cases, had not prevented reactions. Building on adolescents' existing skills and knowledge and the use of Internet and associated social media resources may help to support more effective self-management among adolescents.