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Exploring professionals' views regarding prenatal counselling in congenital diaphragmatic hernia
Celeste R S De Groot1, Esther J C Konings1, Willem P de Boode1
1Department of Neonatology, Radboud University Medical Center, Radboud Institute for Health Sciences, Amalia Children's Hospital, Nijmegen, The Netherlands.
Insights
Healthcare professionals recommend timely prenatal counseling for congenital diaphragmatic hernia (CDH), covering diagnosis, prognosis, and parental needs. Tailored support and clear communication are vital for families facing CDH.
Area of Science:
- Medical Genetics
- Pediatric Surgery
- Neonatology
Background:
- Congenital diaphragmatic hernia (CDH) is a severe birth defect impacting diaphragm and lung development.
- CDH necessitates comprehensive care, including crucial prenatal counseling for affected families.
Purpose of the Study:
- To explore healthcare professionals' perspectives on prenatal counseling for congenital diaphragmatic hernia (CDH).
Main Methods:
- Qualitative study utilizing semi-structured interviews with 18 healthcare professionals involved in CDH patient care.
- Thematic analysis of interview transcripts to identify key themes in counseling views.
Main Results:
- Professionals advocated for early and ongoing counseling sessions post-CDH diagnosis.
- Essential counseling content includes diagnosis explanation, prognosis, consequences, treatment, and practicalities.
- Parental involvement in decision-making is crucial, though preferred levels vary; counseling should be parent-centered.
Conclusions:
- Gained insights into professional consensus on optimal timing, content, and delivery of prenatal CDH counseling.
- Highlights the importance of a multidisciplinary approach and tailored support for families facing CDH.
Objectives:
Congenital diaphragmatic hernia (CDH) is a congenital malformation in which the diaphragm and lungs are underdeveloped, leading to cardiorespiratory and other problems. This study aimed to explore professionals' views regarding prenatal counselling in CDH.
Methods:
A qualitative study was performed among healthcare professionals involved in the care of CDH patients in Radboud university medical center Amalia Children's Hospital. Semi-structured interviews were conducted until saturation was achieved. Transcripts were qualitatively analysed to gain insight into professionals' views regarding counselling.
Results:
Eighteen professionals with various backgrounds were included. The professionals agreed that the first counselling session should be soon after diagnosis and additional sessions should be offered. Concerning counselling content, participants considered explanation of the diagnosis, prognosis, short- and long-term consequences, treatment options and practical aspects important. As for decision-making about possible termination of pregnancy, all professionals emphasised the importance of the parental role, but the preferred parental involvement varied. Regarding practical aspects, preferred counsellors were a neonatologist, obstetrician, paediatric surgeon and/or medical social worker. Participants emphasised that the counselling should be adjusted to parents' needs.
Conclusions:
This study gained insight into professionals' views regarding the timeline, content, decision-making process, and practical aspects of prenatal counselling in CDH.
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