Illness understanding in children and adolescents with heart disease

Abstract

Accurate understanding of chronic illness in patients of any age is associated with less distress, less confusion, improved satisfaction with medical care, better compliance with treatment, and an improved emotional state,1 all key factors for good health-related quality of life. In patients with chronic illnesses such as diabetes mellitus and asthma, illness knowledge has been poor.2,3 Some studies suggest that children with chronic illnesses do not know more about their condition or their body than their healthy counterparts.3 Traditionally, medical professionals have entrusted the parents of children with chronic illnesses with the task of imparting knowledge about the illness to their child. This practice assumes that parents understand the illness and that they pass on their knowledge in a manner appropriate for the individual child. However, parents often do not understand and may forget what they have been told.4 Some have argued that the emotional stress associated with chronic illness retards children's development.5 Patients may understand only part of what has been communicated to them, and wrongful understanding may persist or even be amplified with time. A lack of knowledge can lead to a general sense of confusion, heightened anxiety, and a lack of control.1 In this study, we undertook a formal investigation of knowledge of chronic cardiac illness in children and their comprehension of the time line of their illness (when it started and how long it was likely to continue).