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 q...
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| Format: | Article |
| Language: | English |
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BMC
2025-01-01
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| Series: | BMC Pediatrics |
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| Online Access: | https://doi.org/10.1186/s12887-024-05379-6 |
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| author | Delaram Alinezhad Farnoosh Mohammadi Mohammad Javad Kharazifared Mahdia Gholami Sarvin Sarmadi Samaneh Razeghi |
| author_facet | Delaram Alinezhad Farnoosh Mohammadi Mohammad Javad Kharazifared Mahdia Gholami Sarvin Sarmadi Samaneh Razeghi |
| author_sort | Delaram Alinezhad |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-70ef525d8d724c8e9cd2154bb00c79cc |
| institution | Kabale University |
| issn | 1471-2431 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Pediatrics |
| spelling | doaj-art-70ef525d8d724c8e9cd2154bb00c79cc2025-01-19T12:38:52ZengBMCBMC Pediatrics1471-24312025-01-0125111210.1186/s12887-024-05379-6Parents’ views and experiences of raising babies born with cleft lip and palate: a qualitative studyDelaram Alinezhad0Farnoosh Mohammadi1Mohammad Javad Kharazifared2Mahdia Gholami3Sarvin Sarmadi4Samaneh Razeghi5Dentist, School of Dentistry, Tehran University of Medical SciencesCraniomaxillofacial Research Center, Shariati Hospital, Tehran University of Medical SciencesResearch Advisor, Dental Research Center, Dentistry Research Institute, Tehran University of Medical SciencesResearch Center for Caries Prevention, Dentistry Research Institute, Tehran University of Medical SciencesCraniomaxillofacial Research Center, Shariati Hospital, Tehran University of Medical SciencesResearch Center for Caries Prevention, Dentistry Research Institute, Tehran University of Medical SciencesAbstract 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.https://doi.org/10.1186/s12887-024-05379-6Congenital defectParentsCleft lip/palateBabiesQualitative study |
| spellingShingle | Delaram Alinezhad Farnoosh Mohammadi Mohammad Javad Kharazifared Mahdia Gholami Sarvin Sarmadi Samaneh Razeghi Parents’ views and experiences of raising babies born with cleft lip and palate: a qualitative study BMC Pediatrics Congenital defect Parents Cleft lip/palate Babies Qualitative study |
| title | Parents’ views and experiences of raising babies born with cleft lip and palate: a qualitative study |
| title_full | Parents’ views and experiences of raising babies born with cleft lip and palate: a qualitative study |
| title_fullStr | Parents’ views and experiences of raising babies born with cleft lip and palate: a qualitative study |
| title_full_unstemmed | Parents’ views and experiences of raising babies born with cleft lip and palate: a qualitative study |
| title_short | Parents’ views and experiences of raising babies born with cleft lip and palate: a qualitative study |
| title_sort | parents views and experiences of raising babies born with cleft lip and palate a qualitative study |
| topic | Congenital defect Parents Cleft lip/palate Babies Qualitative study |
| url | https://doi.org/10.1186/s12887-024-05379-6 |
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