Fetal structural congenital anomalies (CA), diagnosed in up to 6% of infants, are the leading cause of infant mortality and a significant cause of infant morbidity in the United States. Although recent medical and surgical interventions are improving the physical outcomes for infants diagnosed with a range of severe CAs, many of these children still struggle with neurodevelopmental and psychological complications. The responsibility for providing sensitive and adaptive parenting to meet the needs of these medically complex infants falls on their parents. Despite the frequency of CAs, a significant knowledge gap remains regarding how parenting takes shape before birth when a prenatal diagnosis is made. This lack of knowledge limits providers'capacities to assess and respond to the psychosocial needs of expectant parents and promote optimal parenting under these challenging conditions. The increasing trend in prenatal diagnoses, risk for suboptimal physical and psychological infant health, and challenges involved in parenting these medically complex infants comprise an important public health problem. Following a prenatal diagnosis, parents are immersed in an unfamiliar system of highly technical medical care that causes them to re-evaluate their circumstances and re-orient themselves. There are no instruments available to assess early parenting at this time. Such an instrument could significantly contribute to the scientific study of parent-infant relationships, attachment, and infant mental health. The purpose and short term goal of this study is to advance theory by identifying dimensions of early parenting before birth under the conditions of a fetal CA diagnosis. The long term goal is to use the findings from this study to construct a self-report instrument for expectant parents to assess the quality of prenatal parenting under the conditions of a fetal CA diagnosis and inform family-centered interventions.
The specific aims of this NRSA application are to: 1) gain the theoretical and empirical knowledge as well as the research skills to establish a productive program of research that will include multiple methods;and 2) complete a Grounded Theory (GT) study that will advance theory about prenatal parenting under the conditions of a diagnosis of a fetal structural congenital anomaly. GT is the ideal methodology for this study because it is specifically used to study a process and gain in-depth understanding of the participant's experience of the phenomenon of interest, in this case, prenatal parenting after a fetal CA diagnosis. Theoretical sampling and member checking will ensure collection and analysis of rich interview data that will increase the relevance and validity of the subsequent instrument. Dimensional Analysis (DA) will guide coding and facilitate synthesis of findings with current knowledge that will advance theory and lead to instrument development. The trainee will receive expert mentoring in every aspect of GT and DA methodologies from internationally-recognized scholars in Nursing and Sociology. The trainee will also audit courses across departments on advanced qualitative methods, theory and medical sociology taught by scholars with specialized knowledge on these topics.
Following a prenatal diagnosis of a fetal structural congenital anomaly, expectant parents must engage in prenatal management of this condition and prepare to meet the myriad of specialized medical and developmental needs of their vulnerable infants after birth. Knowledge regarding this transitional phase of parenting under these extraordinary circumstances is key in designing effective parent assessments and interventions that optimize the health and development of medically fragile infants. The increasing trend in prenatal diagnoses, risk for suboptimal physical and psychological infant health, and challenges involved in parenting these medically complex infants comprise an important public health problem.