Subject(s)
Asthma , Hypersensitivity , Humans , Asthma/therapy , Asthma/epidemiology , Adolescent , Young Adult , Hypersensitivity/therapy , Hypersensitivity/epidemiology , Hypersensitivity/diagnosis , Transitional Care , Health Personnel , Adult , Female , MaleABSTRACT
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, 10-16â¯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.
Subject(s)
Hypersensitivity/therapy , Parent-Child Relations , Self-Management , Adolescent , Chronic Disease , Female , Focus Groups , Humans , Hypersensitivity/nursing , Interviews as Topic , Male , Qualitative Research , SwedenABSTRACT
BACKGROUND: Living with an allergic disease has consequences for both affected children and their families. The aim of this qualitative study was to gain deeper knowledge of what life is like for families of children with severe allergic disease, in order to improve care and thereby reduce the consequences of living with a chronic disease. METHODS: Four focus group interviews were performed with Swedish parents of children, aged 6-11 and 12-16 years, with severe allergic disease (from one or more allergic conditions, such as food allergy/eczema/hay fever/asthma). The participants were attending a family support weekend. Interviews were analyzed with a qualitative method. RESULTS: Based on parental experiences, the following themes were presented in the analysis: limitations, control, injustices, and fear and anxiety. It was evident that the families lived isolated lives and experienced different kinds of limitations. Parents felt a need to have control of their child's everyday life and described a feeling of constantly being on guard. They also suggested that understanding of the child's allergies was lacking in preschool/school and that healthcare did not provide adequate support. They felt that the same care should be offered to children and families, no matter where they lived. CONCLUSIONS: Based on parental experiences, having a child with severe allergic disease implies a need to constantly be on guard. In order to improve the care of children with severe allergy and their families, a more person- and family-centered approach is needed.
