Stina Lou1,2, Lotte Groth Jensen1, Olav Bjørn Petersen2,3, Ida Vogel2,4, Lone Hvidman3, Anne Møller1, Camilla Palmhøj Nielsen1,5. 1. DEFACTUM - Public Health & Health Services Research, Central Denmark Region, Aarhus, Denmark. 2. Centre for Prenatal Diagnostics, Aarhus University Hospital, Aarhus, Denmark. 3. Department of Obstetrics and Gynecology, Aarhus University Hospital, Aarhus, Denmark. 4. Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark. 5. Department of Public Health, Aarhus University, Aarhus, Denmark.
Abstract
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.
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.