Thesis
A hermeneutic phenomenological study of the maternal lived experience of receiving a prenatal diagnosis of agenesis of the corpus collosum
Southern Cross University
Doctor of Philosophy (PhD), Southern Cross University
2025
DOI:
https://doi.org/10.25918/thesis.509
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Abstract
Agenesis of the corpus callosum (ACC) is characterised by the absence or anomalous development of the largest interhemispheric tract in the brain and is increasingly identified through prenatal screening. Fetal anomalies that are highly uncertain, neurological in nature or identified mid-to-late gestation are associated with poor maternal psychosocial outcomes, and ACC meets all three criteria. A review of the literature revealed a paucity of research on the non-biomedical aspects of this prenatal diagnosis, which limited recommendations for care of mothers after a fetal diagnosis of ACC.
This doctoral study aimed to provide a telling of the maternal lived experience of receiving a prenatal diagnosis of ACC. Hermeneutic phenomenology guided this interpretive analysis of concrete moments of pregnancy recalled by mothers who experienced the phenomenon within the four years of study enrolment. The purposively selected sample comprised 26 mothers who resided in the United States of America (n = 18), Australia (n = 4), the United Kingdom (n = 3) and Canada (n = 1). Concurrent data collection and analysis commenced through semi-structured, video-conferenced interviews with 10 mothers. Reflexive thematic analysis was engaged to construct the dimensions of the experience. Diminished returns from interviews earmarked the progression to three online, asynchronous, facilitated focus groups that involved an additional 16 mothers. Further reflexive analysis allowed refinement of the interpretation.
The telling illuminated that mothers who received a prenatal diagnosis were Under Threat. The diagnosis threatened the baby’s life in concrete and abstract ways. Mothers feared their baby might die, the baby’s quality of life was uncertain, and at times, the personhood of the baby was threatened by the diagnosis. The expected future image of the family was disrupted, and life-as-known was thrust into question. Some mothers feared the impact on their other children or worried about their ability to mother and love. Mothers moved Day by Day Towards Adaptation, which involved periods of holding it together for appointments, events or interactions and falling apart in private, away from the need to hide and pretend. The days demanded coping and self-regulatory processes as mothers navigated complex systems and the psychosocial consequences of being under threat. Mothers searched for more than information; they yearned for meaning, hope and control.
The telling of the phenomenon situated within the broader literature surfaced disciplinary implications that grounded practice, policy and research recommendations to reduce the threat embedded in the prenatal diagnosis and to support maternal adaptation.
Details
- Title
- A hermeneutic phenomenological study of the maternal lived experience of receiving a prenatal diagnosis of agenesis of the corpus collosum
- Creators
- Pieta Shakes
- Contributors
- Andrew Cashin (Supervisor) - Southern Cross UniversityJohn Maurice Hurley (Supervisor) - Southern Cross University
- Awarding Institution
- Southern Cross University; Doctor of Philosophy (PhD)
- Theses
- Doctor of Philosophy (PhD), Southern Cross University
- Publisher
- Southern Cross University
- Number of pages
- xvi, 285
- Identifiers
- 991013307628602368
- Copyright
- © Pieta Shakes 2025
- Academic Unit
- Faculty of Health
- Resource Type
- Thesis