Division of Plastic Surgery, Department of Surgery, 8166University of British Columbia, British Columbia Children's Hospital, Vancouver, British Columbia, Canada.
Cleft Palate Craniofac J. 2021 May;58(5):577-586. doi: 10.1177/1055665620977271. Epub 2020 Dec 3.
Prior literature has described the perspectives of parents of young children with clip lip and/or palate; however, few studies have described parents' experiences within a Canadian health care system. This study aims to better understand the experiences of parents of young children with cleft lip and/or palate seen at a Canadian tertiary care center and identify their care needs.
In-depth semistructured interviews.
Pediatric tertiary care center.
Parents of children younger than 7 years of age with cleft lip and/or palate.
From 14 interviews, 4 themes were identified. The diagnosis theme was associated with reactions, timing, and search for information. Key concerns within the theme of physiology and function were around feeding and speech. The health care experience theme included burden of care, peripheral hospitals and services, the cleft lip and palate clinic, and clinicians. The psychosocial theme included parents' reactions to their child's pain, coping strategies, family interactions, and school/day care experiences. Parents felt care could be improved by having: access to good information and community speech therapists, shorter appointment wait times, a peer support network, and increased cleft knowledge within their child's school and peer groups.
The experience of parents of children with cleft lip and/or palate is complex but can be organized into 4 themes. Clinics may consider suggestions offered by parents to improve care. Future work should address parents' needs and aim to create a parent-reported quality-of-life measure specific to parents of young children with cleft lip and/or palate.
先前的文献描述了幼儿唇裂和/或腭裂父母的观点；然而，很少有研究描述过加拿大医疗保健系统中父母的体验。本研究旨在更好地了解在加拿大三级保健中心就诊的幼儿唇裂和/或腭裂父母的经历，并确定他们的护理需求。
深入的半结构式访谈。
儿科三级保健中心。
年龄在 7 岁以下的唇裂和/或腭裂儿童的父母。
从 14 次访谈中，确定了 4 个主题。诊断主题与反应、时间和信息搜索有关。生理和功能主题中的主要关注点是喂养和言语。医疗保健体验主题包括护理负担、外围医院和服务、唇腭裂诊所和临床医生。心理社会主题包括父母对孩子疼痛的反应、应对策略、家庭互动和学校/日托经历。父母们认为可以通过以下方式改善护理：获得良好的信息和社区言语治疗师、缩短预约等待时间、建立同伴支持网络、增加孩子所在学校和同伴群体的腭裂知识。
唇裂和/或腭裂儿童父母的体验是复杂的，但可以分为 4 个主题。诊所可以考虑家长提出的改进护理的建议。未来的工作应该满足家长的需求，并旨在为幼儿唇裂和/或腭裂的父母创建一个特定的、基于家长报告的生活质量衡量标准。
