Parents' views and experiences of raising babies born with cleft lip and palate: a qualitative study.

Abstract

Background: Parents of children born with cleft lip/palate encounter numerous challenges. This study aims to provide a deeper understanding for authorities to better support these parents by exploring the views and experiences of Iranian parents raising babies with cleft lip/palate through qualitative research.

Methods: This qualitative study collected data through face-to-face, in-depth, semi-structured interviews. Using purposive sampling, parents of children with cleft lip/palate who visited the Department of Oral and Maxillofacial Surgery at the Children's Medical Center in Tehran, Iran, were selected. Thematic content analysis was employed to interpret the data and identify themes and subthemes.

Results: From 20 interviews, six themes were identified. The diagnosis theme was associated with timing. Key concerns within the psychosocial experiences theme included initial reactions, pressure from society, the child's future in the community, hiding from family, feeling guilty about the anomaly, and couples' relationships. The challenges in childcare theme included feeding difficulties, financial challenges, and cleft treatments. The information acquisition theme included primary awareness and the importance of knowing how to care for the child. The coping theme included gaining awareness, accepting the problem as God's will and destiny, minimizing the significance of the child's cleft, and support. Parents had concerns about informing the child of his/her condition.

Conclusions: Parents of infants with cleft lip/palate feel unsupported by medical staff in feeding practices and seek improved training for staff. They propose a program to empower staff and advocate for psychological support for parents. Access to specialized baby bottles and financial support is crucial, along with establishing a parent-led community for sharing experiences.