‘We did everything we could’– a qualitative study exploring the acceptability of maternal‐fetal surgery for spina bifida to parents

Abstract

Objective: To explore the concepts and strategies parents employ when considering maternal-fetal surgery (MFS) as an option for the management of spina bifida (SB) in their fetus, and how this determines the acceptability of the intervention. Methods:A two-centre interview study enrolling parents whose fetuses with SB were eligible for MFS. To assess differences in acceptability, parents opting for MFS (n = 24) were interviewed at three different moments in time: prior to the intervention, directly after the intervention and 3-6 months after birth. Parents opting for termination of pregnancy (n = 5) were interviewed only once. Themes were identified and organised in line with the framework of acceptability. Results:To parents opting for MFS, the intervention was perceived as an opportunity that needed to be taken. Feelings of parental responsibility drove them to do anything in their power to improve their future child's situation. Expectations seemed to be realistic yet were driven by hope for the best outcome. None expressed decisional regret at any stage, despite substantial impact and, at times, disappointing outcomes. For the small group of participants, who decided to opt for termination of pregnancy (TOP), MFS was not perceived as an intervention that substantially could improve the quality of their future child's life. Conclusion:Prospective parents opting for MFS were driven by their feelings of parental responsibility. They recognise the fetus as their future child and value information and care focusing on optimising the child's future health. In the small group of parents opting for TOP, MFS was felt to offer insufficient certainty of substantial improvement in quality of life and the perceived severe impact of SB drove their decision to end the pregnancy. Key pointsWhat's already known about this topic? � Maternal-fetal surgery for open spina bifida has the potential to improve long-term outcomes but at significant procedure-related fetal and maternal risk; 910 -Prenatal Diagnosis.

Exploring patient acceptability of a short‐stay care pathway in hospital post arthroplasty: A theory‐informed qualitative study

“…This is similar to findings of a study with patients after pilonidal sinus surgery, whereby acceptability was associated with recovery outcomes 30 . In contrast, one TFA‐based study with parent participants who underwent maternal–foetal surgery for spina bifida found that the outcomes were not associated with acceptability 17 . In this context, parents felt responsible to try ‘anything in their power’ and so the high‐risk intervention was perceived as acceptable even when the post surgical outcomes were disappointing (p. 910) 17 .…”

“…The TFA has been used successfully in other (nonsurgical) contexts to identify components that could be addressed to enhance acceptability, such as nurse‐led reviews of inflammatory rheumatological conditions, postnatal exercise and infant feeding practices 14–16 . It has also been applied in a small number of surgical contexts such as maternal–foetal surgery and intravitreal injections for macular degeneration 17,18 . The TFA has not yet been used in acceptability studies relating to arthroplasty or short‐stay models of care.…”

Maternal–Fetal Surgery: Does Recognising Fetal Patienthood Pose a Threat to Pregnant Women’s Autonomy?

“…Some qualitative studies conducted in recent years suggest that pregnant women involved in, or considering the possibility of undergoing, MFS or other types of prenatal therapy typically see the fetus as an ethically relevant entity, if not a person in its own right [ 23 , 50 ], and are motivated to undergo such procedures by a desire to help the fetus, and thus their future child, have ‘the best life it can’ [ 6 , 10 , 18 , 20 ]. A few primary themes emerge in these studies.…”

“…One of the studies explicitly asked the participants who they consider to be a patient in the context of prenatal therapy, and several expressed the opinion that the pregnant woman was not the sole patient, with just over half stating that they believe the unborn child’s interests to be more important than the interests of its mother [ 23 ]. Secondly, an explicit commitment on part of the parents to ‘do everything they can’ [ 10 , 18 , 20 ] to help is frequently made, again implying that women and their partners perceive the fetus as having some interests of its own, or at least find it plausible to assess its well-being separately from their own. A majority of the participants in one study stated that they found it morally acceptable for a pregnant woman to submit to treatment for fetal benefit [ 23 ].…”

“…A majority of the participants in one study stated that they found it morally acceptable for a pregnant woman to submit to treatment for fetal benefit [ 23 ]. Finally, the themes of retaining hope despite the uncertainty that the procedure will yield a positive outcome, and being prepared for sacrifices to ensure the future child’s better health (out of a sense of parental responsibility), are very prominent in the narratives of those interviewed [ 6 , 18 ].…”