Alinezhad Delaram, Mohammadi Farnoosh, Kharazifared Mohammad Javad, Gholami Mahdia, Sarmadi Sarvin, Razeghi Samaneh
Dentist, School of Dentistry, Tehran University of Medical Sciences, Tehran, Iran.
Craniomaxillofacial Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran.
BMC Pediatr. 2025 Jan 15;25(1):33. doi: 10.1186/s12887-024-05379-6.
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.
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.
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.
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.
唇腭裂患儿的父母面临诸多挑战。本研究旨在通过定性研究探索伊朗抚养唇腭裂患儿的父母的观点和经历，从而让相关部门更深入地了解情况，以便更好地支持这些父母。
本定性研究通过面对面、深入的半结构化访谈收集数据。采用目的抽样法，选取了在伊朗德黑兰儿童医学中心口腔颌面外科就诊的唇腭裂患儿的父母。采用主题内容分析法对数据进行解读，确定主题和子主题。
通过20次访谈，确定了六个主题。诊断主题与诊断时间相关。心理社会经历主题中的主要担忧包括最初的反应、来自社会的压力、孩子在社区中的未来、对家人隐瞒、对异常情况感到内疚以及夫妻关系。育儿挑战主题包括喂养困难、经济挑战和腭裂治疗。信息获取主题包括初步认知以及了解如何照顾孩子的重要性。应对主题包括提高认知、接受问题是上帝的旨意和命运安排、淡化孩子腭裂的严重性以及获得支持。父母们对告知孩子其病情存在担忧。
唇腭裂患儿的父母感到医护人员在喂养方面未给予支持，希望为医护人员提供更好的培训。他们提议开展一个项目来增强医护人员的能力，并倡导为父母提供心理支持。获得专用奶瓶和经济支持至关重要，同时要建立一个由父母主导的社区来分享经验。
