Childbearing Age Women with PKU: Assessment of Care Needs and Preferences

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Title: Childbearing Age Women with PKU: Assessment of Care Needs and Preferences
Creators: Regis, Kimberly
Advisor: Gottesman, Mary Margaret
Issue Date: 2011-06
Abstract: Abstract Purpose: The purpose of this project was to describe the care needs and preferences of adult women of childbearing-age with PKU. Methods: A descriptive design using open-ended questions and forced choice responses was used to collect data through patient phone interviews. A Health Demographic Information Form, and the Maternal PKU Knowledge Test (Shiloh, St. James, & Waisbren, 1990) were also used. Analysis: Demographic data were analyzed with descriptive statistics using SPSS (IBM, 2011). Relationships among select variables and MPKUT scores were examined using Spearman’s correlation. Content analysis of the phone interviews was done to identify themes and sub-themes. Results: The sample consisted of 6 adult women with early-treated PKU (mean age 29 years). All participants stated that PKU was integrated into their daily lives. Preconception planning and pregnancy increased their concern in regard to dietary management of PKU in order to avoid negative outcomes for their infants associated with poor metabolic control. Various methods were used to manage the PKU diet, with family support an essential component of achieving dietary adherence. Barriers to dietary adherence included financial constraints prohibiting the purchase of medical foods. A basic knowledge of PKU and Maternal PKU was demonstrated. Some desired mental health, OB/GYN, and social work services as part of their PKU care. PKU clinic staff was described as friendly and supportive; however suggestions offered included written educational materials and implementation of multiple and more frequent communication modalities. Conclusion: Participants consistently identified PKU as an important part of their life with increased concern during the preconception period and pregnancy. Family support and clinic support were described as essential but in need of expansion and enhanced communication modalities.
Series/Report no.: The Ohio State University. College of Nursing Doctor of Nursing Practice Final Document Projects
Keywords: maternal phenylketonuria
Embargo: No embargo
Publisher: The Ohio State University
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