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Updated: Feb 7, 2026
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跨学科裂口治疗的感知:关于裂口儿童及其父母的定性试点研究
Tara Mouton1,2, Fien Allemeersch1, Kristiane Van Lierde1
1Department of Rehabilitation Sciences, Centre of Speech and Language Sciences (CESLAS), Ghent University, Ghent, Belgium.
International journal of language & communication disorders
|February 6, 2026
概括
跨学科的口唇裂治疗对家庭产生了情感和经济上的影响. 了解患者和家长的看法是改善长期护理期间生活质量和应对策略的关键.
科学领域:
- 儿科医学 儿科医学 儿科医学
- 心理学 心理学 心理学
- 医疗服务研究 医疗服务研究
背景情况:
- 裂唇和/或 palatal (CLP) 的儿童的跨学科护理旨在改善生活质量 (QoL).
- 这种协调的长期治疗可能会被儿童及其家人视为负担.
- 以前的研究表明,与跨学科裂护理相关的财务,情感和时间负担.
研究的目的:
- 调查患有CLP的儿童及其父母的观点.
- 专注于跨学科裂治疗的心理和财务影响.
- 探索家庭如何感知和应对长期裂护理的挑战.
主要方法:
- 试点研究涉及10名父母和7名患有CLP的孩子.
- 七个半结构面试与孩子和父母同时进行.
- 定性数据的感应性主题分析,通过研究人员三角化和成员检查进行增强.
主要成果:
- 出现了四个主要主题:管理治疗费用,情感旅程,协作护理经验和接受/适应.
- 家庭报告了严重的财务负担 (保险,自付费用) 和情绪上的损失 (诊断,手术焦虑).
- 人们注意到了积极的调整和应对策略,并认识到治疗的好处,如改善外观和功能.
结论:
- 跨学科裂治疗影响了医疗和财务方面之外的QoL,受家庭对CLP的看法的影响.
- 心理社会支持和财务指导对于管理治疗负担和加强家庭应对至关重要.
- 语音语言病理学家 (SLP) 可以通过灵活的服务提供和以家庭为中心的护理方法来缓解家庭压力.
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