Common sense model of illness in youth with type 1 diabetes or sickle cell disease.

objectivesTo qualitatively explore differences in Leventhal's common sense model (CSM) constructs between youth with type 1 diabetes (T1D) and sickle cell disease (SCD) and between different age groups and level of disease control.

methodsTwo structured individual interviews were conducted in 24 youth with T1D (n=12) or SCD (n=12). Patients were between 8 and 21 years of age, had either good or poor disease control, and were seen at an outpatient children's hospital medical clinic.

resultsYOUTH CONCEPTUALIZE THEIR CHRONIC DISEASE IN TERMS OF IDENTITY, CAUSE, TIMELINE, CONTROL, AND CONSEQUENCES: both cognitive and emotional dimensions are apparent. There was considerable contrast between discussions of youth with well- and poorly controlled T1D but little contrast between youth with well- and poorly controlled SCD. Surprisingly, youth with well-controlled T1D mentioned emotions most frequently. No youth with poorly controlled T1D described disease acceptance, but the majority of youth with well-controlled T1D did. Adolescents and young adults with good T1D control appear to understand disease cause, have better illness coherence, and habitually link discussion of symptoms and negative emotions with solutions. Youth with poorly controlled T1D appeared more likely to connect symptoms with negative consequences. Consequences included 1) disease symptoms, 2) the need to perform self-care activities, 3) physical outcomes, 4) health-system activities, 5) emotions, and 6) life impact. Interestingly, sickling crisis was mentioned more frequently by youth with good SCD control than by those with poor SCD control. Youth with SCD are distressed by others' judgmental perceptions and by feeling different from others.

conclusionsIn contrast to previous CSM work, youth with well-controlled T1D in this study discussed emotions more frequently than did those with poor control. Disease perceptions were similar between youth with well- and poorly controlled SCD. Results indicate there are noteworthy cognitive and emotional differences between youth with different types of disease and levels of disease control.