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Parental Experience of Prenatal Diagnosis of Lymphatic Malformation
Z Lokmic1,2,3, L Hallenstein1,2, A J Penington1,4
1Murdoch Childrens Research Institute, Parkville, Victoria, Australia.
Insights
Prenatal diagnosis of lymphatic malformations (LM) was a traumatic experience for parents, highlighting a need for better information and care pathways. Improved collaboration between obstetric and specialized clinics is recommended for enhanced parental support.
Area of Science:
- Medical Genetics
- Developmental Biology
- Pediatric Surgery
Background:
- Lymphatic malformations (LM) are congenital anomalies originating from somatic mutations in lymphatic endothelial cells.
- Prenatal diagnosis of LM presents unique challenges for expectant parents.
- Understanding parental experiences is crucial for improving care and support systems.
Purpose of the Study:
- To investigate and understand the experiences and perspectives of parents following the prenatal diagnosis of lymphatic malformations.
- To identify challenges faced by parents in accessing information and navigating care pathways.
- To explore emotional responses and coping mechanisms of parents during this period.
Main Methods:
- Qualitative study involving in-depth, semistructured interviews with parents of children diagnosed prenatally with LM.
- Thematic analysis of transcribed interviews to identify common experiences and themes.
- Recruitment of 5 families from a specialized Vascular Anomalies Clinic.
Main Results:
- Parents perceived prenatal LM diagnosis as an unexpected and distressing event.
- Lack of adequate information and a clear care pathway led to confusion and anxiety.
- Parents utilized the internet for information, sometimes encountering distressing content.
- Observed differences in emotional responses and parental roles between mothers and fathers.
Conclusions:
- Enhanced communication and collaboration between obstetric centers and specialized treatment clinics are essential.
- Improved information dissemination and structured care pathways are needed to support parents.
- Addressing the emotional and informational needs of parents is critical for better outcomes.
Abstract:
Lymphatic malformations are a developmental anomaly arising from a somatic mutation in the lymphatic endothelial cells. This study investigated parental experiences associated with prenatal diagnosis of LM. Parents of 5 children diagnosed prenatally with LM were recruited from the Vascular Anomalies Clinic at the Royal Childrens Hospital, Melbourne. Ten in-depth semistructured interviews were conducted with each parent separately to explore their experiences and views at the time of diagnosis and immediately after childbirth. Transcribed interviews were coded and thematically analyzed. Parents experienced prenatal diagnosis of LM as an unexpected and traumatic event. The lack of adequate information and clear care pathway created confusion and added to the difficulty of understanding the impact of LM on the unborn child and what to expect after the child was born. Parents used the internet as the primary source of additional information; however, some parents found that information distressing. Differences between mothers and fathers were noted in terms of roles that each parent played and their emotional responses during pregnancy and the prenatal diagnosis. Closer connection between obstetric centers and specialized treatment clinics are suggested to facilitate better understanding of the LM impact on the unborn child and available treatment options after birth.
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