Download Full Text (271 KB)
Background: Parents who find out that their unborn baby is diagnosed with Spina Bifida have the option of fetal surgery during their pregnancy, a surgery that was studied in the Management of Myelomeningocele (MOMS) Trial and was published in 2011. Parents face a short timeframe and decision making that includes weighing risks and benefits of surgery for both mother and baby.
Study Aims: To learn more about how parents make the decision to pursue fetal surgery for Spina Bifida. To determine the use of the Shared Decision Making framework to describe parent interaction with the healthcare team.
Methods: We conducted a qualitative study using semi-structured interviews and purposive sampling with 10 parents who chose fetal surgery. Interviews were recorded and transcribed verbatim. We used an inductive approach to analyze data from the interviews and conducted thematic analysis.
Preliminary Findings: Parents’ decision making focused primarily on their baby and the potential benefits their child could gain from fetal surgery. Decision-making was swift, early and conclusive. Parents reported gathering information through online groups and being heavily guided by the experience of other parents in these groups who underwent fetal surgery. Parents described the influence of the healthcare team often in interpersonal terms, valuing relationships with those that were supportive, compassionate and normalizing.
Preliminary Conclusions: Through this initial qualitative study, we concluded that parents find comfort and meaning in fetal surgery as a mechanism for caring for their unborn child, and they arrive at that decision primarily through their values, other parents’ shared experiences and compassion received from the healthcare team. We hope to use this information to shape parents’ care in the Fetal Health Center and lay the groundwork for future studies on the psychosocial impact of fetal surgery.
Hansen, Kara; Trowbridge, Kelly; Scott, Marni; Simpson, Kathryn; and Wayne, Allie, "Parent Decision Making With Fetal Surgery" (2021). Research at Children's Mercy Month 2021. 9.