Reproductive Decisions in Carriers of Genetic Disease: A Survey of Parents of Children with Inborn Errors of Metabolism
Review TypeNone: Degree-based Submission
Review StatusNot Applicable (See Review Type)
Repository Posting Date2019-08-30T17:06:36Z
Author DetailsCatherine Y. Read, PhD, RN
Lead Author Sigma AffliationAlpha Chi
Level of EvidenceCross-Sectional
Research ApproachQuantitative Research
This study explained reproductive decisions among parents who have already given birth to a child with an inborn error of metabolism (IEM). Two hundred thirty parents (65% response rate) completed a telephone survey which addressed biologic, psychological and sociocultural variables relative to five reproductive decision making outcomes (receptivity to prenatal diagnosis, likelihood of pregnancy termination, impact on future reproductive plans, measures taken to prevent future pregnancies, and birth of subsequent children). Using a combination of logistic and multiple regression, five models, derived from the Interaction Model of Client Health Behavior (IMCHB), were constructed to explain both the direct and indirect effects of the variables on the five separate outcomes. The models correctly classified 61%, 92%, 64%, 71%, and 74% respectively in receptivity to prenatal diagnosis, likelihood of pregnancy termination, impact on future reproductive plans, measures taken to prevent future pregnancies, and birth of subsequent children. Important direct effects variables included parental stress, greater worry about the living child's future, parents' sense of competency with respect to making health-related decisions for their child, parent age at the time of the child's diagnosis, diagnosis of mitochondrial disease, diagnosis made through newborn screening, previous history of pregnancy loss, and birth order of the child. The IMCHB provided a comprehensive framework for modeling the multiple direct and indirect predictors of reproductive decisions. This study clearly points to the need for more in-depth study of client and provider interaction, especially with regard to the actual content of formal and informal counseling. Further, health professionals in the role of genetic counselors need to focus intensively on parents' affective responses and perceived stress and the role they play in reproductive decision making.
DescriptionThis dissertation has also been disseminated through the ProQuest Dissertations and Theses database. Dissertation/thesis number: 3001678; ProQuest document ID: 230933685. The author still retains copyright.
Advisor(s)Cox, Cheryl L.
Degree GrantorUniversity of Massachusetts, Lowell
NotesThis item has not gone through this repository's peer-review process, but has been accepted by the indicated university or college in partial fulfillment of the requirements for the specified degree.
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