Threat and adaptation: The maternal lived experience of continuing pregnancy after receiving a prenatal diagnosis of agenesis of the corpus callosum.

One stated objective of prenatal screening and diagnosis is the preparation for delivering a baby with medical needs or disability, however, psychosocial outcomes of parents who received a prenatal diagnosis suggest that this objective is not yet realised. Preparation may be complicated by diagnostic and prognostic uncertainty. A prenatal diagnosis that includes significant uncertainty due to the heterogeneous presentations, classifications, causes and outcomes is agenesis of the corpus callosum. As a neuroanatomical anomaly identified in the second or third trimesters, the diagnosis is likely to cause distress for expectant mothers, yet there is limited guidance for holistic support. To begin to address the paucity of research, this hermeneutic phenomenological study sought to explore, and provide a telling of the maternal experience of continuing pregnancy after a prenatal diagnosis of agenesis of the corpus callosum. Through interviews and a series of online, asynchronous and facilitated focus groups, lived experiences during pregnancy from the time of diagnosis to birth were explored with 26 mothers who participated in this international study. Themes were constructed through reflexive thematic analysis to describe the experience of the lived phenomenon. The first theme, Under Threat, included subthemes of The Threat to the Life of the Baby and Threatened Image of the Expected Family. The second theme, Day to Day Toward Adaptation, included subthemes of Holding it Together and Falling Apart, and More Than Information, Searching for Meaning, Hope and Control. To realise the commonly stated objective of prenatal diagnosis, to support maternal preparation, healthcare professionals require awareness of the profound, yet individual experience of prenatal diagnosis to adequately respond and support mothers through their continued pregnancies. Healthcare services should be designed to flexibly respond in a woman- and family-centred manner to reduce the threat and support maternal adaptation after a prenatal diagnosis.

Scoping Review of the Prenatal Diagnosis of Agenesis of the Corpus Callosum.

OBJECTIVE: To map and summarize the literature related to the prenatal diagnosis of agenesis of the corpus callosum (ACC) to inform nursing practice. DATA SOURCES: We searched MEDLINE, CINAHL, PyscINFO, and Academic Search Complete with the use of strings of curated terms to cover the broad ACC nomenclature. Documents were published in English between 2009 and June 1, 2020. We also hand searched the reference lists of included documents. STUDY SELECTION: We screened 582 abstracts and retrieved the full texts of primary research articles, reviews, discussion papers, and peer-reviewed book chapters if the abstracts specifically mentioned ACC and the prenatal period. We excluded case reports, conference and poster abstracts, papers on broader anomalies, and animal studies. We reviewed 84 full-text documents and identified 61 for inclusion. DATA EXTRACTION: We charted the data through an iterative process under headings for location, article type, study design, participant age, ACC type, recruitment, method, tools/assessments, results, key recommendations, gestational age at diagnosis, termination of pregnancy rate, the definition of isolated ACC, and our notes of critique of the document. DATA SYNTHESIS: We constructed a narrative synthesis from thematically arranged data. In the included documents, ACC was diagnosed between 17 and 38 weeks gestation and was frequently described as heterogeneous because of different causes, presentations, and outcomes. Whether the ACC was isolated as the only anomaly or present with other anomalies was considered the key factor for prenatal counseling. However, the definition of isolated ACC was inconsistent. CONCLUSION: The inconsistent nomenclature and definitions of an isolated presentation of ACC increase the ambiguity in the prenatal diagnosis and must be considered when the outcome and diagnostic efficacy studies are interpreted. There is an absence of research on parents' experiences of prenatal diagnoses of ACC to inform holistic nursing interventions and the provision of psychosocial support.