Parents’ experience of continuing a pregnancy after the diagnosis of a fetal life limiting condition: a qualitative systematic review

Loading...
Thumbnail Image
Date
2021-12
Authors
Lelond, Stephanie
Journal Title
Journal ISSN
Volume Title
Publisher
Abstract

When expecting parents are told their baby’s life is likely to be brief due to a fetal life limiting condition (FLLC), they are faced with a heartbreaking choice to terminate or continue the pregnancy. While historically termination has been the assumptive choice, there has been a recent increase in parental desire for supports to continue these pregnancies, and healthcare providers face limited knowledge of parents’ experiences and needs. This qualitative systematic review synthesized the best available evidence of parents’ experiences of continuing a pregnancy after the diagnosis of a FLLC. Research questions included 1) What meanings do parents assign to the experience, from diagnosis to bereavement, when continuing a pregnancy with a FLLC?, 2) How does continuing a pregnancy after the diagnosis of a FLLC shape parental identity?, 3) What conditions shape parents’ experiences from diagnosis to bereavement?, and 4) What are parental supportive care needs when continuing a pregnancy after the diagnosis of a FLLC to bereavement? Methods: Participants included any parent of a fetus that has been prenatally diagnosed with a FLLC expected to result in a natural perinatal death and has chosen to continue the pregnancy. Inclusion criteria were qualitative original research studies written in English, without date restrictions, published and unpublished papers in CINAHL, SCOPUS, JBI, PsycINFO, Cochrane, PubMed, and grey literature. Papers selected for full review were examined by two independent reviewers and assessed for methodological quality using the JBI critical appraisal tool. Data were extracted using the JBI Data Extraction Form, findings were given a level of plausibility, and synthesized using a meta-aggregative approach. PRISMA reporting standards were followed. Results: 14 studies were included, and 19 categories were aggregated into 5 synthesized findings; Revising the Goals of Pregnancy, Navigating Relationships, Parental Identity and Roles, Parental Needs, and Positive Outcomes. Conclusions: Findings are supported within the literature and implications for practice from diagnosis to bereavement are offered. Suggestions for future research are made. This systematic review provides a synthesized approach to for multidisciplinary healthcare providers to better understand the parental experiences and needs when continuing a pregnancy after the diagnosis of a FLLC.

Description
Keywords
Perinatal palliative care, Perinatal hospice, Fetal life limiting condition, Lethal fetal anomaly, Systematic review
Citation