Living with a Severe Allergy: Lived Perspectives from Swedish Adolescents and their Parents.

Background: During adolescence, the young person should gradually develop independence from his or her parents. However, having a chronic disease like a severe allergy may add stress and challenges beyond normal development and involves a struggle between adapting socially, feeling healthy, and managing the disease.

Objective: To describe experiences of living with a severe allergy from the perspective of adolescents and their parents.

Method: A qualitative study with six focus group interviews were performed, two with adolescents and four with their parents (10 adolescents, 10-16 years old and 21 parents). The transcribed data were analyzed using systematic text condensation.

Result: Four themes emerged: Feeling different (adolescents and parents), shift in responsibility (adolescents and parents), the importance of parents (only adolescents) and the importance of healthcare providers (only parents). The adolescents relied on their parents, while also taking responsibility for managing their disease. The parents expressed a need to protect their children; but they did not seem to be aware of the responsibility their children took. The parents highlighted the importance of support from healthcare providers but this was not mentioned by the adolescents.

Conclusion: This study showed that both the adolescents and their parents stated that they took responsibility for managing the disease, but in different ways. For healthcare providers, this needs to be taken into account in order to support both adolescents and parents for self-management and shift in responsibilities which begins during adolescents.