Parental response to severe or lethal prenatal diagnosis: a systematic review of qualitative studies

Objective A severe or lethal prenatal diagnosis places great demands on prospective parents, who face choices of far‐reaching consequences, such as continuing or terminating the pregnancy. How best to support these parents is a clinical challenge. This systematic review aimed to identify and synthesize the qualitative evidence regarding prospective parents' responses to such prenatal diagnoses. Methods Following PRISMA guidelines, four databases were systematically searched and 28 studies met the inclusion criteria. Thematic analysis guided data extraction and synthesis of findings. The Confidence in the Evidence for Reviews of Qualitative research assessment tool was utilized to assess confidence in the findings. Results Prospective parents experienced multiple losses, for example, of the healthy child, normal pregnancy and envisioned future. After diagnosis, they requested timely and reliable information and empathetic continued interaction with clinicians. Prospective parents who continued the pregnancy wished to be acknowledged as parents and engaged in planning to obtain a sense of meaning and control. Selective disclosure and concerns about negative responses were issues both for the parents who terminated and those who continued a pregnancy. Conclusion Clinicians can support parental coping following a severe prenatal diagnosis through continued dialogue and collaboration. Further research is needed on the experiences of parents who choose to terminate a pregnancy following prenatal diagnosis. © 2017 John Wiley & Sons, Ltd. What's already known about this topic? Prospective parents are generally positive towards prenatal information about the health of the fetus. Prospective parents are often unprepared for a prenatal diagnosis. What does this study add? A synthesis of 28 qualitative studies of parental responses to a prenatal diagnosis, using the GRADE‐Confidence in the Evidence for Reviews of Qualitative research approach to estimate confidence in the findings. Prospective parents experience multiple losses following a prenatal diagnosis, irrespective of whether they terminate or continue the pregnancy. Prospective parents request timely, sufficient and reliable information from clinicians. Empathic and validating communication with clinicians supports coping.