Abstract 91

Aims: In order to improve our understanding of parental perceptions and attitudes regarding neonates at high risk of poor outcome, we surveyed parents and health care providers with reference to these infants. Methods: We administered self report questionnaires to parents and health providers simultaneously when the infants were 1 to 7 days of age and repeated the parent questionnaire at the age of 6 weeks. Inclusion criteria were, < 26 weeks gestation, < 750 g and moderate to severe hypoxic-ischaemic encephalopathy. Results: Response rates were parents (25/35 71%), health providers (physicians, nurses, social workers, 87/125, 70%). The initial questionnaire revealed that more parents than health providers felt their infants were critically ill (85% vs. 62%), but were likely to survive (77% vs. 58%) and not at high risk of severe handicap(63% vs. 36%). 29% of parents did not think they had the right to withdraw care if their infant was at high risk of handicap vs. 4% of staff. Parents were more positive about their ability to cope with a child with behavior disorder, global learning disorder or multiple handicaps. There was agreement that parents and doctors should have a role in any treatment withdrawal decision but 20% of parents felt that nurses should not have a role in decision making vs. 3% of staff. Both staff and parents did not agree with law courts and the Ministry of Health having a role in treatment withdrawal decisions. 25% of parents and staff felt that parents were not fully informed of their infant's condition including the long term consequences. Conclusions: Parents and health providers have different perceptions of illness severity and prognosis of infants at high risk of adverse outcome, and different attitudes toward decision making. Improved understanding of these dynamics will improve communication to parents and enhance treatment decision making.