COMPLEXITIES OF PARENTAL UNDERSTANDING OF PHENYLKETONURIA

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Abstract
Parental understanding of phenylketonuria (PKU),investigated through a questionnaire, was evaluated as to completeness and with respect to distortion. Only 19% of 79 parents gave adequately correct answers. The education of the parents was not related to their understanding. Neither the intellectual status of the child with PKU nor its behavioral reactions were found to be related to the individual parent's understanding of the illness. However, the better the understanding of a marital pair, the more intelligent the child was (p < .05) and the higher its behavioral score tended to be (p < .10). Mothers with more complete understanding tended to have brighter sons. Half of the total parent group displayed considerable tendencies to distort in their answers to the questionnaires, education again being unrelated to distortion. Fathers who were more prone to distort had children with lower IQ scores (p < .05) and poorer behavior ratings (p < .10). We believe that effectiveness of communication with parents is, in part, related to the nature of parental thinking. This might be explored independenty, not where it pertains to the child's illness.

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