An Overnight Weekend Model for Maternal PKU Education and Support

Abstract

A high percentage of young women with phenylketonuria (PKU) become pregnant prior to initiating dietary treatment which lowers blood phenylalanine levels to a safe range or have difficulty maintaining blood phenylalanine levels in the treatment range once pregnant. This results in a high incidence of serious birth defects in the offspring. The goals of this education program were to inform, instruct and build relationships among young women with PKU which would be supportive of effective family planning and diet initiation resulting in metabolic control prior to pregnancy. Programming was developed based on studies of young women with PKU indicating social support and attitudes were associated with adherence to medical recommendations. Unique aspects of the overnights, which were held for three consecutive years, are as follows: 1. Young women with PKU are often isolated from each other because of the rarity of their disease. Therefore the young women with PKU were encouraged to attend the overnight with a close friend, partner, and or parent. The significant other received concurrent instruction and could become an on-going source of support. 2. All attendees, followed the diet for PKU for the duration of the event. 3. Workshops that included hands-on learning, cooking activities, family planning, opportunities to “Meet-the-Moms” and self-esteem activities enabled the young women to experience the challenges of a PKU pregnancy and promoted decision-making. Twenty-three young women with PKU participated in the overnights over the three years, nine repeatedly. Of note, approximately 1/3 of the participants had minimal recent contact with PKU professionals and the overnight became a significant source of information and support for them.