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 and blood samples were collected on the first and last days of camp to evaluate the psychological and medical impact of the programme. Long‐term outcome was assessed through telephone interviews 7 ‐ 14 months later. Knowledge of maternal PKU and the maternal PKU diet increased significantly. There was a significant increase in campers' ratings of the degree to which others supported the use of birth control to prevent late‐treated pregnancies, although campers' comfort with contraception did not change. Mean blood phenylalanine concentrations were significantly reduced by 37% during camp and by 20% at follow‐up. Ninety‐six per cent of campers remained in contact with other campers after the summer. At follow‐up, one pregnancy was reported, in which metabolic control was achieved prior to conception. Overall, attitudes about treatment and perceptions about ability to cope with PKU did not change to a significant degree. It is suggested that camps may be most successful in changing both behaviour and attitudes if they actively involve the campers in food preparation, address the psychological meaning of food in our culture, and provide social support.