Background There is little published information about the self-perceptions of children with chronic physical diseases and the ways in which self-perceptions might change as a result of treatment. An innovative measure of self-perception is described, suitable for use by children of widely varying ages as well as by parents.
Methods The instrument used assessed eight constructs contributing to self-perception, and also measured differences between perceptions of actual and ideal self. Children (n= 31; age 5–15 years) with congenital heart disease (CHD) were assessed prior to surgery and 1 year post-operatively. Comparisons were made with children before and 1 year after bone marrow transplantation (BMT), and with healthy children.
Results There were no differences between the groups in ideal self-perceptions, but the CHD children rated themselves as weaker, more frightened and more ill than the healthy group. Given the differences in symptomatology and illness experience of children with cyanotic and acyanotic lesions, surprisingly few differences emerged in the self-perceptions of these two groups, although differences were found among younger and older children assessed separately. Significant improvements were found in self-perceptions of the CHD and BMT groups following treatment, and at follow-up, no significant differences remained between the CHD and healthy groups. In the latter, self-perception was largely unchanged between the two assessments.
Conclusions Assessment of self-perception should be an integral part of the assessment of health outcomes in childhood illness. The study demonstrated the significant improvement in self-perception following surgery for CHD. The results also support the validity, reliability and sensitivity to change of the assessment measure.