Threat and adaptation
The maternal lived experience of continuing pregnancy after receiving a prenatal diagnosis of agenesis of the corpus callosum
Bibliographic Data
| ID | 3662508 |
|---|---|
| Authors | Pieta Shakes (0000-0003-4487-6429, Southern Cross University, corresponding author), Andrew Cashin (0000-0001-6173-9114, Southern Cross University), Jenna Hurley (0000-0001-9205-2331, Southern Cross University), John Hurley |
| Year | 2023 |
| Volume | 339 |
| Pages | 116391 |
| Publication date | 2023-12-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Social Science & Medicine (JOURNAL) |
| Journal identifiers | ISSN: 0277-9536 • E-ISSN: 1873-5347 |
| Publisher | Elsevier BV (PUBLISHER) |
| DOI | 10.1016/j.socscimed.2023.116391 |
| PMID | 37956619 |
| OpenAlex | W4388487205 |
| Language | EN |
| References cited | 36 |
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
Agenesis of the corpus callosum · Corpus callosum · Developmental psychology · Population · Pregnancy · Prenatal care · Prenatal diagnosis · Psychiatry · Psychosocial · Qualitative research · Thematic analysis · Fetal and Pediatric Neurological Disorders · Medicine · Neonatal and fetal brain pathology · Prenatal Screening and Diagnostics · Psychology
The Routledge International Handbook of Children's Rights and Disability
Consolidated criteria for reporting qualitative research (Coreq)
Prenatal Care Use Among Women of Low Income
Developing the craft
Worldview Accommodation
It’s All Public Anyway’
The Life-Course Dynamics of Goal Pursuit and Goal Adjustment
Preparing Heart and Mind for Becoming a Parent Following a Diagnosis of Fetal Anomaly
Have no regrets
Philosophical Hermeneutic Interviewing
| Citation velocity | historical |
|---|---|
| Highly cited | No |