The Content and Role of an Online Support Group for Parents of an Unborn Baby With a Diagnosis of Spina Bifida Considering Fetal Surgery: A Qualitative Analysis

Objectives To explore concerns discussed in a closed online support group for parents considering open fetal surgery for their unborn baby diagnosed with open spina bifida. Methods Thematic analysis was used to analyze data from a UK‐based closed Facebook (Facebook.com) parent support group. Two researchers were granted access to the group for two weeks (commencing 18/11/2021 and 18/1/2022) and manually extracted posts and comments from consenting participants from the group's inception (04/2019) until October 2021. Results We extracted 659 unique posts from 41 members. Thematic analysis using inductive coding identified three overarching themes representing discussions relating to (1) maternal physical and psychological support; (2) navigating ongoing child health and development; and (3) decision‐making and preparation for fetal surgery. Subthemes within each were related to (1) preoperative and postoperative maternal health, finances, emotional support, and community building; (2) preoperative planning and support, information needs, and decision‐making; and (3) child development, health concerns, and access to resources. Conclusion Parental concerns when considering or opting for fetal surgery encompass topics beyond current counseling. Our observations should enhance pre‐surgical counseling and prompt the provision of additional information to support families throughout their pregnancy, before and after surgery, and in the ongoing care of their child.