Keck School of Medicine, University of Southern California and Division of Plastic and Maxillofacial Surgery, Children's Hospital Los Angeles, Los Angeles, CA.
Department of Environmental and Occupational Health Sciences, University of Washington, and Center for Child Health, Behavior and Development, Seattle Children's Research Institute.
J Craniofac Surg. 2021;32(5):1817-1821. doi: 10.1097/SCS.0000000000007550.
Literacy interventions are needed for children born with orofacial clefts, particularly for Latinx children who may experience multiple risk factors. To collect formative data for intervention design, focus groups and interviews were completed with 18 Latinx parents of children ages 13 to 49 months with orofacial clefts. Interviews focused on literacy experiences and practices. Six themes were identified through inductive qualitative analysis: child reading skills were highly valued; parents were motivated to improve on their childhood reading experiences; bilingualism was a goal for all parents; parents noted challenges in building child reading skills; reading engagement was broadly defined; and impact of cleft diagnosis was wide-reaching. Implications for intervention include a bilingual strength-based approach incorporating cleft-specific speech concerns, play, parallel online programming, behavioral strategies, and social support options. Use of telephone and online intervention with mailed materials can also help address family resource and time limitations.
需要为唇腭裂患儿提供读写能力干预措施,特别是对于可能面临多种风险因素的拉丁裔患儿。为了为干预措施设计收集形成性数据,我们对 18 名年龄在 13 至 49 个月之间的拉丁裔唇腭裂患儿的家长进行了焦点小组和访谈。访谈重点关注读写经验和实践。通过归纳定性分析,确定了六个主题:儿童的阅读技能受到高度重视;父母有动力改善他们儿时的阅读体验;双语是所有父母的目标;父母注意到培养儿童阅读技能的挑战;阅读参与度的定义广泛;以及唇腭裂诊断的影响范围广泛。干预措施的意义在于采用双语优势为基础的方法,结合唇腭裂特定的言语问题、游戏、平行的在线编程、行为策略和社会支持选项。使用电话和在线干预以及邮寄材料也有助于解决家庭资源和时间限制的问题。