Women with phenylketonuria (PKU), an inborn error of metabolism, are at-risk for bearing children with serious birth defects unless they are treated prior to and throughout pregnancy. Despite the risks, most fail to comply with treatment recommendations, resulting in death and disabilty for their children. Traditional models of service delivery have not been successful in assisting women with PKU. In response to this need, the Resource Mothers Program for Maternal PKU was created. In this program, trained outreach workers are sent into the homes of women with PKU who are pregnant or planning a pregnancy.
An ecological developmental model was employed to design and evaluate this porgram. Previous data analysis revealed that program participants achieved metabolic control sooner and had infants with larger birth head circumferences and higher developmental scores, than those who did not have Resource Mothers. (St. James, Shapiro &Waisbren, AJPH, 1999).
This presentation focuses on understanding the process of change within an ecoligcal context. It details what made the intervention suceesful. Results from interviews with the women with PKU and Resource Mothers revealed that Resource Mothers achieved a special relationship characterized by a respectful, nonjudgmental stance, and incorporating the qualities of family, friend, teacher and therapist. Resource Mothers intervened in an individualized manner. These interventions supported developmental reorganization by minimizing stresses and increasing supports.
Understanding this process of developmental change has implications for a variety of interventions to assist women and families. Delivering home based individualized services utilizing paraprofessionals supervised by health professionals provided effective service delivery. This service integration approach offered the benefits of both personalized, outreach-based and professional clinic-based services. Such models allow professionals to maximize their impact in this era of shrinking funds.
Learning Objectives: After participating in this session particiapants will be able to 1. List the risks asssociated with MPKU. 2. Describe the process of change in an ecological intervention. 3. Describe the benefits of a relational, non-judgemental intervention approach
Keywords: Maternal and Child Health, Prevention
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.