Mothers’ Internet Journeys Through Social, Health Care, and Virtual Systems When Congenital Anomalies Are Diagnosed In Utero

Abstract

Objective

To examine mothers’ internet usage, in conjunction with social, health care, and virtual peer support navigations, when congenital anomalies were diagnosed in utero.

Design

Qualitative descriptive, consisting of semistructured interviews.

Setting

Interview data were collected over Zoom; mothers participated from locations of their choosing.

Participants

Mothers of neonates discharged postoperatively from NICUs for uterine-diagnosed congenital anomalies. The sample was purposefully recruited from private Facebook groups for parents of children with congenital anomalies.

Intervention/Measurements

Analysis was done with deductive coding using concepts from the third iteration of the systems engineering initiative for patient safety theory. The a priori codes were health care, social, journey–benefit, journey–risk, task, and technology.

Results

Twenty-two mothers signed up for an interview; 12 completed an interview, and 10 did not. The majority (n = 8, 66%) were White, had a bachelor’s or graduate degree (n = 7, 58%) and were between 24 and 33 years of age (n = 8, 66%). Nine themes emerged: (a) Providers cautioned searching for diagnosis information but encouraged private Facebook groups for peer support, (b) Mothers’ inquiries for their own care are lacking, (c) Search for information while recognizing parent-partner’s coping differences, (d) Pace information from friends and family with patience and appreciation, (e) Manage inquiries from friends and family with group sharing, (f) Private Facebook groups provide a means of receiving and giving peer support, (g) Exposure to difficult stories on Facebook is a risk of stress, (h) Select a NICU, learn about their children’s diagnoses, participate in virtual peer support, and (i) Device features frame search strategies.

Conclusion

Mothers reflected on the internet as a burden and a source of support in their health care journeys. The ubiquity of internet access calls for mothers to include in their health care journeys the complexities of managing time spent on the internet.