Illness narratives of children with asthma.

A child's own story of the illness experience is a necessary starting point for intervention strategies and outcomes research. A descriptive study of perceptions of asthma among 28 children (6-18 years old) with moderate or severe asthma was part of a larger study of symptom perception of asthma in childhood. The study sample included 36% Caucasian, 46% African American, and 18% other ethnic groups, encompassing a range of socioeconomic groups. Open-ended, semi-structured interviews were used to elicit children's perceptions of the impact of asthma on their lives, things that bothered them about having asthma, and worries they experienced. Visual analogue scales were used to assess several values. Themes that emerged in data analysis included (a) "I can't," (b) restrictions, (c) symptoms and treatments, (d) death, and (e) adaptation. Overall, asthma had a profound impact on study children, and certain themes were more predominant among subgroups of race and age; notably, the death theme was more prominent among African-American children.