Mothers’ Reflections on their Management of Information Resources and the Early Journeys of Parenting Children with Congenital Anomalies Diagnosed During Pregnancy

Abstract

Problem: Fetal diagnoses are possible by the 16th week of gestation. Websites, social media, and mobile applications allow mothers, and their social support systems, access to diagnoses information and resources without healthcare provider guidance. Purpose: The purpose of this mixed methods study was to examine mothers’ reflections on their searches for information and resources pertaining to their children’s congenital anomalies diagnosed in utero. Methods: The study was framed by Systems Engineering Initiative for Patient Safety 3.0 (SEIPS 3.0). Concepts are socio-organization, journey, tasks, and technology. This was a convergent mixed methods study with a cross-sectional survey and semi-structured interviews. Recruitment was a targeted convenient sampling via Facebook private groups. Upon completion of the survey, mothers were invited to sign up for a Zoom interview. The analysis measured group differences for race, education, age, and gestational week of diagnosis (GWD). The a priori codes, SEIPS 3.0 concepts, were used to detect emerging themes. Integration was completed using joint displays. Results: The total survey sample was 74 mothers, and the interview sample was 12. Significant differences were found among education groups regarding SEIPS 3.0 task subscale scores (F [3,70] = 3.53 p =.019), and provider guidance subscale scores (F [3,70] = 5.49 p = .002). Novice categorical variable, GWD, approached significance regarding Impact of a Child with Congenital Anomalies on Parents (ICCAP), subscale scores for social network, (F [4,69] = 2.12 p = .087), and state of mind (F [4,69] = 2.47, p=.053). Twenty-one statements emerged from the six a priori codes. From the consolidation of those statements, six themes emerged. Discussion: Early GWD was associated with positive perceptions of social support. Pace of support was managed by controlling number of people informed. Mothers perceived fetal diagnoses to be beneficial, but GWD later in pregnancy was a risk for negative state of mind. Mothers with less academic education received more search guidance from providers. Guidance discouraged searches for diagnosis information but encouraged searches for Facebook groups.