The psychosocial impact of anaphylaxis on young people and their parents

BACKGROUND: Anaphylaxis is a potentially life-threatening disorder that can affect people of all ages. Young people are at a disproportionately increased risk of anaphylaxis deaths for reasons that include a failure to institute appropriate long-term management regimens. A pre-requisite for effective supported self-management of young people with anaphylaxis is a better understanding of the factors that contribute to risk-taking behaviour. OBJECTIVE: To explore the psychosocial impact of living with anaphylaxis on adolescents and their parents; their management of the condition; and perceptions of health care provision. METHODS: In-depth interviews were conducted with 15 participants, these comprising of seven adolescents aged between 13 and 16 years with a history of clinician-diagnosed anaphylaxis and eight of their parents, in this Scottish community-based exploratory qualitative study. RESULTS: Adolescents in this study typically perceived anaphylaxis as 'no big deal', describing a relatively low impact on their day-to-day life when compared with their parents. This could largely be explained by the fact that most adolescents could not remember an anaphylactic reaction. Key obstacles to effective long-term self-management included inadequate knowledge to support detailed situation-specific risk assessment, this being compounded by a lack of confidence to make further enquiries about the ingredients of meals when with peers. Parents reported anxiety about 'handing over' the main responsibility for avoidance and emergency management to their children. Medical support for these families was very limited, with primary care teams in some cases actively hindering effective self-management. CONCLUSION: Having a child with anaphylaxis can have a significant long-term psychological impact on parents and this anxiety may in some cases be transferred from parents onto their children. Parents and adolescents may benefit from tailored information to support the transition from parental- to self-management by adolescents. Access to appropriate national health service primary and specialist care was in some cases currently inadequate to support effective long-term management. Further, more in-depth research in a more heterogeneous group of adolescents is needed.