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Prenatal diagnosis of orofacial clefts: unveiling the parents' experience
Verônica Aparecida Pezzato da Silva1, Marina Gifalli1, Francine Aroteia Capone1
1Universidade de São Paulo, Bauru, SP, Brazil.
Insights
Parents found receiving a prenatal diagnosis of orofacial cleft complex. Essential family and professional support aids in coping with this diagnosis, highlighting the need for better interventions.
Area of Science:
- Medical Genetics
- Pediatric Surgery
- Psychology
Background:
- Orofacial clefts are common congenital malformations.
- Prenatal diagnosis allows for early identification of orofacial clefts.
- Understanding parental experiences is crucial for supportive care.
Purpose of the Study:
- To explore parental experiences with prenatal diagnosis of orofacial cleft.
- To identify challenges and needs of parents receiving this diagnosis.
Main Methods:
- Qualitative descriptive study.
- Semi-structured interviews with 17 parents (16 mothers, 1 father).
- Thematic Content Analysis of transcribed interviews.
Main Results:
- Parents described challenges in 'dealing with the unknown'.
- Assimilation of the diagnosis was a significant process.
- Prenatal diagnosis had both positive and negative implications for parents.
Conclusions:
- Receiving a prenatal diagnosis of orofacial cleft is a complex and conflicting experience for parents.
- Family and professional support are vital for parental assimilation and coping.
- There is a need for structured interventions and public policies to support parents during this period.
Objective:
To understand the experience of parents regarding prenatal diagnosis of orofacial cleft in their children.
Methods:
Descriptive study with a qualitative approach, carried out in a Brazilian public tertiary hospital between January and March 2019. Parents who were accompanying their children during hospitalization for primary surgeries and who had received the diagnosis of malformation during pregnancy were included in this study. Data was collected through semi-structured interviews, which were audio-recorded and transcribed in full. To prepare the results, Content Analysis was used in the Thematic modality.
Results:
The sample had 17 participants: 16 mothers and one father. From the speeches, three categories were unveiled: dealing with the unknown, assimilating the diagnosis, and positive and negative implications of prenatal diagnosis.
Conclusions:
We learned how complex and conflicting it was for parents to receive the diagnosis of malformation in their children, and that family and professional support was essential to the process of assimilation and coping. The findings point to the need for planning and implementing interventions, protocols and/or public policies aimed at assisting these parents in this period.
