SOCIAL-FACTORS AND THE MEANING OF FOOD IN ADHERENCE TO MEDICAL DIETS - RESULTS OF A MATERNAL PHENYLKETONURIA SUMMER CAMP

A Maternal PKU camp provided education and social support for 25 young women with phenylketonuria (PKU). Questionnaires were administered an d blood samples were collected on the first and last days of camp to e valuate the psychological and medical impact of the programme. Long-te rm assessed through telephone interviews 7-14 months later. Knowledge of maternal PKU and the maternal PKU diet increased significantly. The re was a significant increase in campers' ratings of the degree to whi ch others supported the use of birth control to prevent late-treated p regnancies, although campers' comfort with contraception did not chang e, Mean blood phenylalanine concentrations were significantly reduced by 37% during camp and by 20% at follow-up. Ninety-six per cent of cam pers remained in contact with other campers after the summer. At follo w-up, one pregnancy was reported, in which metabolic control was achie ved prior to conception. Overall, attitudes about treatment and percep tions about ability to cope with PKU did not change to a significant d egree. It is suggested that camps may be most successful in changing b oth behaviour and attitudes if they actively involve the campers in fo od preparation, address the psychological meaning of food in our cultu re, and provide social support.