先天性听力障碍行人工耳蜗植入患儿父母照护体验的质性研究

朱陈程; 吴婷; 刘佩; 张纯靖; 崔圆圆; 邱建新; 张标新

doi:10.3969/j.issn.1672-4933.2025.04.017

您当前的位置：

首页 >

文章列表页 >

先天性听力障碍行人工耳蜗植入患儿父母照护体验的质性研究

康复教育 | 更新时间：2026-07-11

- 先天性听力障碍行人工耳蜗植入患儿父母照护体验的质性研究
- A Qualitative Study of Parental Care Experience for Children with Congenital Deafness Undergoing Cochlear Implantation
- 中国听力语言康复科学杂志 2025年23卷第4期页码：429-432
- 作者机构：
  
  1.安徽医科大学第一附属医院普胸外科合肥 230022
  2.安徽医科大学护理学院合肥 230032
  3.安徽医科大学第一附属医院耳鼻咽喉头颈外科合肥 230022
- 作者简介：
  
  朱陈程硕士主管护师；研究方向：康复护理
  张标新，E-mail：532611328@qq.com
- 基金信息：
  
  安徽省高校自然科学基金重大项目(2024AH040110)
- DOI：10.3969/j.issn.1672-4933.2025.04.017
  中图分类号： R473.72
- 收稿：2024-10-17，
  
  纸质出版：2025-07-15
- 稿件说明：
移动端阅览
朱陈程,吴婷,刘佩等.先天性听力障碍行人工耳蜗植入患儿父母照护体验的质性研究[J].中国听力语言康复科学杂志,2025,23(04):429-432.

ZHU Chen-cheng,WU Ting,LIU-Pei ,et al.A Qualitative Study of Parental Care Experience for Children with Congenital Deafness Undergoing Cochlear Implantation[J].Chinese Scientific Journal of Hearing and Speech Rehabilitation,2025,23(04):429-432.
朱陈程,吴婷,刘佩等.先天性听力障碍行人工耳蜗植入患儿父母照护体验的质性研究[J].中国听力语言康复科学杂志,2025,23(04):429-432. DOI： 10.3969/j.issn.1672-4933.2025.04.017.

ZHU Chen-cheng,WU Ting,LIU-Pei ,et al.A Qualitative Study of Parental Care Experience for Children with Congenital Deafness Undergoing Cochlear Implantation[J].Chinese Scientific Journal of Hearing and Speech Rehabilitation,2025,23(04):429-432. DOI： 10.3969/j.issn.1672-4933.2025.04.017.

摘要

目的

探讨先天性听力障碍患儿父母的照护体验。

方法

采用目的抽样法选取2023年6月～7月在合肥市某三级甲等医院耳鼻咽喉头颈外科收治的15名先天性听力障碍患儿父母进行半结构访谈，应用Colaizzi七步分析法分析资料并提炼主题。

结果

先天性听力障碍患儿父母照护体验可归纳为负性情绪反应强烈、负罪感显著、高度疾病不确定感、身心负担沉重、创伤后成长5个主题。

结论

先天性听力障碍患儿父母照护体验复杂，医护人员应关注患儿父母的心理状态，通过专业的心理疏导和干预措施，帮助其有效缓解负性情绪、减轻负罪感，并提升对疾病的认知水平、积极应对策略，肯定其在逆境中的努力与成长，促使患儿照护质量和康复效果的提升。

Abstract

Objective

To explore the care experience of parents of children with congenital deafness.

Methods

15 parents of children with congenital deafness who were admitted to the Department of Otolaryngology and Head and Neck Surgery of a Grade A tertiary hospital in Hefei City from June to July 2023 were selected for semi-structured interviews. The data were analyzed by Colaizzi seven-step analysis method and themes were extracted. 5 themes were extracted: negative emotional response was strong

significant guilt

high disease uncertainty

heavy physical and mental burden

and post-traumatic growth.

Conclusion

The care experience of the parents of children with congenital deafness is complex and diverse. Medical staff should focus on the psychological state of the parents of children with congenital deafness

and help them effectively relieve negative emotions

reduce guilt

improve their cognition of the disease through professional psychological counseling and intervention measures. Positive coping strategies should be adopted to affirm their efforts and growth in adversity. To promote the quality of care and rehabilitation of children.

关键词

Keywords

references

李玲 , 雷琪琪 , 刘华涛 , 等 . 标准化护理在幼儿人工耳蜗植入术中的应用 [J ] . 中国卫生标准管理 , 2023 , 14 ( 8 ): 162 - 167 .

韩东一 . 先天性重度-极重度感音神经性聋的外科治疗现状与展望 [J ] . 中国临床新医学 , 2019 , 12 ( 9 ): 933 - 936 .

杨璐 , 黄美萍 , 周嵌 , 等 . 蜗神经发育不良先天性耳聋儿童人工耳蜗植入干预的听觉及言语能力长效评估研究 [J ] . 上海交通大学学报(医学版) , 2023 , 43 ( 7 ): 890 - 897 .

冯新宇 , 于文永 . 家庭参与式护理改善人工耳蜗植入患儿家长照顾负担的效果 [J ] . 护理研究 , 2024 , 38 ( 3 ): 505 - 509 .

杨立雄 , 刘曦言 , 梁俊雯 . 听障儿童家庭心路历程与社会退却研究 [J ] . 中国听力语言康复科学杂志 , 2023 , 21 ( 1 ): 4 - 8 .

Zhang Q , Song D , Liu Y , et al . Sleep quality, caregiver burden, and individual resilience among parents of children with epilepsy [J ] . Epilepsy Behav , 2022 , 135 : 108873 .

刘明 . Colaizzi七个步骤在现象学研究资料分析中的应用 [J ] . 护理学杂志 , 2019 , 34 ( 11 ): 90 - 92 .

郭倩倩 , 孟超 , 吕静等 . 不同内耳畸形患儿人工耳蜗植入后听觉言语能力分析 [J ] . 中国耳鼻咽喉头颈外科 , 2023 , 30 ( 9 ): 557 - 561 .

Ma J , Lin K , Jiang HC , et al . A novel mutation of the PAX3 gene in a Chinese family with Waardenburg syndrome type I [J ] . Mol Genet Genomic Med , 2019 , 7 ( 7 ): e00798 .

冯昭嫣 . 重型β地中海贫血患儿父母创伤后成长状况及影响因素分析 [D ] . 广西医科大学 , 2019 .

Tekola B , Kinfe M , Girma F , et al . Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: A qualitative study [J ] . Soc Sci Med , 2020 , 256 : 113034 .

Wang X , Ye J , Tian X , et al . Affiliate stigma and caregiver burden in parents of children with epilepsy [J ] . Prev Med Rep , 2024 , 41 : 102686 .

Chu SY , Rafi ABM , Lee J , et al . The relationship between affiliate stigma, stress, and quality of life for parents of individuals with cerebral palsy in Malaysia [J ] . Disabil Rehabil , 2023 , 45 ( 24 ): 4035 - 4047 .

Wang YN , Lin QH , Meng D , et al . Relationship Between Mindfulness and Affiliate Stigma in Parents of Children with Autism Spectrum Disorder in China: The Mediating Role of Coping Styles [J ] . Asian Nurs Res (Korean Soc Nurs Sci) , 2024 , 18 ( 2 ): 89 - 96 .

范亚荣 , 康凤英 , 和美清 , 等 . 家庭韧性视角下青少年抑郁症患者家庭应对的质性研究 [J/OL ] . 护士进修杂志 , 1 - 13 [ 2024-08-31 ] .

刘文崇 , 葛洪霞 , 程方方 , 等 . 220名癌症患儿父母养育内疚感现状及影响因素分析 [J ] . 护理学报 , 2022 , 29 ( 23 ): 1 - 6 .

Thivierge E , Luu TM , Bourque CJ , et al . Guilt and Regret Experienced by Parents of Children Born Extremely Preterm [J ] . J Pediatr , 2023 , 257 : 113268 .

吴淑琼 , 李真真 , 杨宁波 . 学龄前孤独症谱系障碍患儿母亲心理健康水平及其与亲职压力的相关性 [J ] . 军事护理 , 2023 , 40 ( 7 ): 61 - 64+97 .

Faghani F , Choobforoushzadeh A , Sharbafchi MR , Poursheikhali H . Effectiveness of mindfulness-based supportive psychotherapy on posttraumatic growth, resilience, and self-compassion in cancer patients: A pilot study [J ] . Wien Klin Wochenschr , 2022 , 134 ( 15-16 ): 593 - 601 .

夏素琴 , 江秀敏 , 刘桂华 . PICU重症患儿父母疾病不确定感现状及影响因素分析 [J ] . 中国卫生标准管理 , 2022 , 13 ( 19 ): 185 - 189 .

骆媚芬 , 郑蓉婷 , 李娟等 . 泌尿道感染患儿陪护疾病不确定感与社会支持的现状调查及相关性研究 [J ] . 中国卫生标准管理 , 2023 , 14 ( 16 ): 10 - 14 .

Farhadi A , Bahreini M , Moradi A , et al . The predictive role of coping styles and sense of coherence in the post-traumatic growth of mothers with disabled children: a cross-sectional study [J ] . BMC psychiatry , 2022 , 22 ( 1 ): 1 - 10 .

Byra S , Ćwirynkało K . Do beliefs influence posttraumatic growth in fathers of children with intellectual disabilities? [J ] . Research in Developmental Disabilities , 2020 , 104 : 103687 .

邓凤良 , 方玉琦 , 梅海波等 . 罕见先天性胫骨假关节患儿父母照护体验的质性研究 [J ] . 护士进修杂志 , 2022 , 37 ( 15 ): 1412 - 1416 .

浏览量

下载量

CSCD

文章被引用时，请邮件提醒。

提交

工具集

关联资源

家庭生态系统视角下2～3岁语言发育迟缓儿童家庭影响因素研究

孤独症儿童家长使用数字化工具干预的质性研究

老年听障患者人工耳蜗植入临床问题探讨（Ⅰ）——术前决策与围手术期关键问题

《儿童助听器验配服务指南》团体标准解读

学龄前听障儿童视听情绪整合能力研究进展