Shakes, Pieta, Cashin, Andrew, and Hurley, John (2023) Threat and adaptation: The maternal lived experience of continuing pregnancy after receiving a prenatal diagnosis of agenesis of the corpus callosum. Social Science and Medicine, 339. 116391.

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Abstract

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.

Item ID:	81026
Item Type:	Article (Research - C1)
ISSN:	1873-5347
Keywords:	Agenesis of corpus callosum; Prenatal diagnosis; Ultrasonography; Prenatal; Hermeneutic phenomenology; Corpus callosum disorder; Pregnancy; Lived experience; Prenatal care
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Copyright Information:	© 2023 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
Date Deposited:	14 Nov 2023 00:17
FoR Codes:	42 HEALTH SCIENCES > 4205 Nursing > 420504 Mental health nursing @ 35% 42 HEALTH SCIENCES > 4204 Midwifery > 420403 Psychosocial aspects of childbirth and perinatal mental health @ 35% 32 BIOMEDICAL AND CLINICAL SCIENCES > 3215 Reproductive medicine > 321502 Obstetrics and gynaecology @ 30%
SEO Codes:	20 HEALTH > 2003 Provision of health and support services > 200307 Nursing @ 50% 20 HEALTH > 2004 Public health (excl. specific population health) > 200409 Mental health @ 50%
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