Parents' perceptions of medical diagnoses and related issues for their high-risk infants.

INTRODUCTION: The objectives of this study were (a) to compare maternal and paternal perceptions of infant medical diagnoses with hospital-chart diagnoses, (b) to examine whether parental perceptions of infant medical condition (using three variables) were related to eight other parental perceptions, and (c) to determine what medical diagnoses were associated with parental expectations that neonatal diagnoses were having current effects of would have future effects on their infant. METHOD: With a questionnaire format 76 parents reported information about medical diagnoses and their perceptions about eight other issues for their infants who had been hospitalized in an NICU. RESULTS: Parents reported approximately 62% of the medical diagnoses for their infants during NICU hospitalization; these significantly differed from hospital-chart diagnoses. Parents who reported current or future effects of neonatal diagnoses also (a) had fears for their infants while in the hospital or currently, (b) perceived prematurity as having current or future effects, (c) reported restrictions for their infants caused by neonatal diagnoses, and (d) gave less optimal ratings for their infants' current health status. Parents' perceptions of current or future effects of neonatal diagnoses appeared to be inaccurate given the actual diagnoses for their infants. DISCUSSION: The underreporting of diagnoses by parents raises several issues as to how accurately parents are perceiving their infants. Parents who perceived continued effects of neonatal diagnoses also had less optimal perceptions of other related issues. Parent's perceptions of continued effects of neonatal diagnoses appeared to be unwarranted with respect to the actual diagnoses assigned to their infants.