Background: Families with Kawasaki disease (KD) experience profound anxiety, part of which is related to uncertainties about the future. We sought to understand the personal and emotional impact of uncertainty for both parents and children with coronary artery complications.
Method: During 2013-14, 31 participants were recruited. Data collection included chart reviews of demographic factors, relevant medical history, investigations, and treatments. Parents and children completed questionnaires (uncertainty, intrusiveness, self-efficacy) and were interviewed. The qualitative data were analyzed for common themes and exemplars in order to complement the quantitative questionnaire data.
Findings: Descriptive data were compared with questionnaire scores to identify factors associated with high, negative impact using univariable linear regression models. High intrusiveness scores among parents were associated with having a child who had previous cardiac catheterization (p =.05), received anticoagulant medications (p = .04), lower education (p = .02 [mother], p = .04 [father]) and income (p = .05), and for those in whom the KD diagnosis was initially missed (p <.001). Higher uncertainty scores among children were associated with absence of chest pain (p = .04) and lower number of echocardiograms (p = .01). Parents’ uncertainty was associated with missed diagnosis (p = .002), higher education (p = .03 [mother]), and higher income levels (p = .01). Self efficacy was assessed among children >10yrs. While 3 subscales (academic, social, emotional) were analyzed, the overall self-efficacy scores increased with the presence of chest pain (p = .003) and increased aneurysms z-score (p =.03). Qualitative analysis revealed 3 main themes: 1) staying normal while hyper-vigilant; 2) optimism amid relentless worry; and 3) healthy present for a hopeful future. The themes involved contrasting sentiments, each of which was held by the child or the parent but with varied levels of expression.
Summary: Negative illness impact is associated with a more intense medical experience. Both children and parents have concerns about future outcomes and management. Coping with uncertainty involves achieving a balance between anxieties and a present and forward focus.