The parental journey of fetal care: a systematic review and metasynthesis
Abigail Wilpers1, Mert Ozan Bahtiyar1, David Stitelman1
1Division of Maternal-Fetal Medicine, Department of Obstetrics, Gynecology, and Reproductive Sciences (Drs Wilpers, Bahtiyar, Stitelman, Calix, and Chase); Division of Pediatric Surgery, Department of Surgery (Drs Stitelman, Yung, and Maassel), Yale School of Medicine, New Haven, CT; Yale New Haven Hospital, New Haven, CT (Drs Wilpers, Bahtiyar, Stitelman, Calix, Chase, Yung, and Maassel); Yale School of Nursing, Yale University, Orange, CT (Drs Wilpers, Bahtiyar, and Novick); Harvey Cushing/John Hay Whitney Medical Library, Yale University, New Haven, CT (Ms Batten).
Objective:
This study aimed to synthesize the qualitative literature on parental experiences of fetal care to reflect events that happened across the continuum of care and to better understand parents' positive and negative experiences with care delivery.
Data Sources:
Eligible studies published until June 2020 were retrieved from MEDLINE, Embase, Cochrane Central Register of Controlled Trials, EBSCO CINAHL, Web of Science, and ProQuest.
Study Eligibility Criteria:
Studies must have been: (1) published in English in a peer-reviewed journal or in ProQuest, (2) available in full text, (3) contained a qualitative component, and (4) focused on expectant parents' experiences of tertiary, coordinated, multidisciplinary prenatal diagnosis and care related to a fetal anomaly.
Study Appraisal And Synthesis Methods:
Researchers used the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research. A metastudy and an interpretive description approach was taken to synthesize the events that happened across the continuum of care and the themes associated with a positive care experience.
Results:
The metasynthesis included 13 studies and 217 patients from 11 different multidisciplinary fetal diagnosis and intervention practices across North America and Europe. We identified key events that influenced parental experience of fetal care across the continuum. The themes associated with a positive care experience are parents (1) gaining understanding and feeling understood, (2) realizing agency and control, and (3) finding hope and meaning. We identified aspects of healthcare delivery that served as barriers or facilitators to these positive experiences.
Conclusion:
Understanding the commonalities of the parental experience of fetal care across diverse settings creates a foundation for improving care and better meeting the needs of parents undergoing a painful and life-defining event. Although health outcomes are not always positive, a positive experience of care is possible and can assist parents to cope with their grief, manage their expectations, and engage in their care. The findings of this study illustrate the ways in which healthcare delivery can facilitate or obstruct a positive care experience.
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