Illness perception ratings of high-risk newborns by mothers and clinicians: relationship to illness severity and maternal stress.

OBJECTIVE Patients' views of illness are often thought to differ from those of medical staff, although this is rarely assessed. This study examined the correspondence between mothers' and clinicians' perceptions of the same high-risk newborns, as well as with an objective measure of illness severity. We also investigated how mothers' perceptions were related to reported stress. METHODS Mothers of 99 high-risk infants admitted to either a neonatal intensive care or neonatal high dependency unit, which offers specialized but not intensive care, completed illness perception ratings of their baby's condition as well as perceived stress 3 to 5 days following admission. At the same time, a standardized measure of neonatal illness severity was calculated and the baby's primary neonatologist completed illness perceptions ratings. RESULTS Unlike clinician ratings, mothers' illness perceptions were not significantly correlated with illness severity. Mothers generally rated babies in both units as sicker and having a more serious illness than did neonatologists. Whereas clinicians, compared with mothers, rated babies in intensive care as having an illness that would affect their life more and last for a longer time. Mothers rated medical treatment to be significantly more helpful than did clinicians, particularly for babies admitted to the high dependency unit. Mothers' stress was significantly associated with illness perceptions but unrelated to illness severity. CONCLUSIONS Significant differences exist in the perceptions of illness severity, helpfulness of treatment, and the long-term effects of the baby's illness between parents and clinicians and this may lead to misunderstandings and misinterpretations in communication.