Cross-Cultural Perspectives On Coping With The Risks Of Maternal Phenylketonuria

Shoshana Shiloh, Susan E. Waisbren, Bernard E. Cohen, Paula ST James, Harvey L. Levy

Research output: Contribution to journalArticlepeer-review


Maternal phenylketonuria (PKU) refers to the deleterious effects on a fetus due to high maternal phenylalanine levels. Prevention of these effects requires that women with PKU reduce their blood phenylalanine levels prior to and throughout pregnancy which means that they plan their regnancies and adhere to a phenylalanine restricted diet. According to a psycho-social model of maternal PKU, a first necessary step in preventing the effects of maternal PKU is prevention of unplanned pregnancies i.e.: using effective family planning practices. In the present study, findings are presented on seventy-five phenylketonuric women (60 from the United States and 15 from Israel) who participate in a prospective longitudinal study, to reveal the reasons why the proportion of pregnancies treated prior to conception has consistently been higher in Israel than in the United States. The two groups were interviewed and administered a battery of tests and questionnaires measuring a wide range of variables associated with family planning. Subjects in the United States were found to have more knowledge about fertility, contraception and maternal PKU. Israeli subjects held more negative attitudes towards and were less engaged in pre-marital sexual relationships, more frequently used oral contraceptives, had stronger motivation to have their own children, and perceived their disease to have a more negative effect on their lives. These findings suggest that the issues in maternal PKU are cultural as well as medical and psychosocial.

Original languageEnglish
Pages (from-to)435-446
Number of pages12
JournalPsychology and Health
Issue number6
StatePublished - 1 Dec 1993


  • Cross-cultural differences
  • adherence to medical recommendations
  • maternal PKU
  • phenylketonuria


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