Kumar Shuba, Mohanraj Rani, Vaidhyalingam Thailavathy, Chakkaravarthi Subhiksha, Thiruvenkatachari Badri
Samarth, Chennai, Tamil Nadu, India.
Department of Orthodontics, Sree Balaji Dental College and Hospital, Bharath Institute of Higher Education and Research, Chennai, Tamil Nadu, India.
Cleft Palate Craniofac J. 2024 Dec 1:10556656241298217. doi: 10.1177/10556656241298217.
The study aimed to understand parents' reactions to cleft, the manner in which they learned about its presence, and the challenges they faced in caring for their child with a view to providing healthcare professionals insights toward enhancing care delivery.
Qualitative in-depth interviews using the grounded theory approach were carried out with 11 mothers and fathers of children with cleft lip and palate (CLP) attending a cleft speciality hospital in Chennai city, in South India.
Analysis resulted in the discovery of 5 core categories, learning about CLP-when and how, reactions and attributions to CLP, learning about and expectations from treatment, caring for a child with CLP and support systems. Feelings of shock and bewilderment when they learned of the presence of cleft in their child was reported by most parents. Poor awareness of cleft, difficulties in feeding, and concerns for the child's future were major sources of disquiet. The presence of support from family and friends and interactions with other parents of children with cleft helped them to cope better.
The results highlight the need for enhancing understanding of cleft among parents and strengthening them emotionally, thereby empowering them to provide effective care for their child. There is an urgent need to develop standardized information materials for parents to ensure that they have clear, consistent, and reliable information on the care of their child.
本研究旨在了解父母对唇腭裂的反应、得知孩子患有唇腭裂的方式以及他们在照顾孩子过程中所面临的挑战，以期为医护人员提供见解，以改善护理服务。
采用扎根理论方法，对印度南部金奈市一家唇腭裂专科医院的11位唇腭裂患儿的父母进行了定性深入访谈。
分析发现了5个核心类别，即了解唇腭裂的时间和方式、对唇腭裂的反应和归因、对治疗的了解和期望、照顾唇腭裂患儿以及支持系统。大多数父母表示，当得知孩子患有唇腭裂时，他们感到震惊和困惑。对唇腭裂的认知不足、喂养困难以及对孩子未来的担忧是主要的不安来源。家人和朋友的支持以及与其他唇腭裂患儿父母的交流帮助他们更好地应对。
研究结果凸显了加强父母对唇腭裂的了解并在情感上给予支持的必要性，从而使他们能够为孩子提供有效的护理。迫切需要为父母开发标准化的信息材料，以确保他们获得关于孩子护理的清晰、一致和可靠的信息。
