普拉德-威利综合征患儿父母家庭管理困境及应对体验的质性研究

doi:10.3761/j.issn.0254-1769.2026.16.009

中华护理杂志 ›› 2026, Vol. 61 ›› Issue (16): 2225-2230.DOI: 10.3761/j.issn.0254-1769.2026.16.009

普拉德-威利综合征患儿父母家庭管理困境及应对体验的质性研究

张珺钰¹(), 马明圣², 文永乐³, 赵维谦³, 孙静⁴, 李杨³^,^*()

¹ 中国医学科学院北京协和医院护理部北京市 100730
² 中国医学科学院北京协和医院儿科北京市 100730
³ 中国医学科学院北京协和医学院护理学院北京市 100144
⁴ 中国医学科学院北京协和医院门诊部北京市 100730

收稿日期:2025-10-08 出版日期:2026-08-20 发布日期:2026-08-14
*通讯作者: 李杨，E-mail：liyang3413@sina.com
作者简介:张珺钰：女，硕士，护士，E-mail：junyuzhang_15@163.com
第一联系人：作者贡献声明
张珺钰：研究设计、资料收集、论文撰写；马明圣：研究指导、论文审阅与修改；文永乐：资料收集；赵维谦：资料收集；孙静：研究指导；李杨：研究指导、论文审阅与修改
基金资助:
北京市自然科学基金资助项目(L242034)

A qualitative study on the family management dilemma and coping experience of parents of children with Prader-Willi syndrome

ZHANG Junyu¹(), MA Mingsheng², WEN Yongle³, ZHAO Weiqian³, SUN Jing⁴, LI Yang³^,^*()

¹ Department of Nursing， Chinese Academy of Medical Sciences and Peking Union Medical College Hospital， Beijing 100730， China
² Department of Pediatrics， Chinese Academy of Medical Sciences and Peking Union Medical College Hospital， Beijing 100730， China
³ School of Nursing， Chinese Academy of Medical Sciences and Peking Union Medical College， Beijing 100144， China
⁴ Outpatient Department， Chinese Academy of Medical Sciences and Peking Union Medical College Hospital， Beijing 100730， China

Received:2025-10-08 Online:2026-08-20 Published:2026-08-14
* Corresponding author: LI Yang，E-mail：liyang3413@sina.com
Funding program:
Beijing Natural Science Foundation(L242034)

摘要/Abstract

摘要：

目的深入了解普拉德-威利综合征患儿父母家庭管理的困境与应对体验，为临床制订针对普拉德-威利综合征患儿家庭管理的支持策略提供参考。方法采用目的抽样法，于2023年10月—2024年12月选取北京市某三级甲等综合医院收治的11名普拉德-威利综合征患儿的父亲或母亲作为研究对象，对其进行半结构式访谈，应用Colaizzi 7步分析法归纳分析并提炼主题。结果针对普拉德-威利患儿父母家庭管理的困境，提炼出照顾患儿面临的诸多困难、家庭正常生活受到影响、难以获取有效的社会支持3个主题，共9个亚主题；针对普拉德-威利患儿父母家庭管理的应对体验，提炼出家长应对方法和态度存在差异、照护过程中的心理体验2个主题，共5个亚主题。结论普拉德-威利综合征患儿父母在家庭管理中存在诸多困难，需要医疗、社会、学校等多方共同努力，减轻父母照顾负担，提高其应对能力，从而提升患儿及其家庭成员的生活质量。

关键词: 普拉德-威利综合征, 家庭管理, 父母, 质性研究, 儿科护理学

Abstract:

Objective To gain an in-depth understanding of the difficulties and coping experiences in family management among parents of children with Prader-Willi syndrome（PWS），providing references for developing support strategies in clinical practice. Methods Using purposive sampling，11 parents of children with PWS who were treated at a tertiary grade A general hospital in Beijing from October 2023 to December 2024 were selected as study participants. Data were collected through semi-structured interviews and analyzed using Colaizzi’s 7-step phenomenological analysis method to summarize and identify themes. Results A total of 3 main themes（9 sub-themes） emerged regarding family management challenges，including multiple challenges in caring for the child，disruption of normal family life，and difficulties in accessing effective social support. Parent coping strategies included 2 themes（5 sub-themes） focusing on caregiving approaches and psychological experiences. The coping experiences of parents were categorized into 2 themes（5 sub-themes），covering variations in parental coping methods and attitudes，and their psychological experiences during the caregiving process. Conclusion Parents of children with PWS face numerous difficulties in family management. Collaborative efforts from healthcare，society，schools，and other sectors are needed to alleviate the caregiving burden on parents，enhance their coping abilities，and ultimately improve the quality of life for both the children with PWS and their family members.

Key words: Prader-Willi Syndrome, Family Management, Parents, Qualitative Research, Pediatric Nursing

张珺钰, 马明圣, 文永乐, 赵维谦, 孙静, 李杨. 普拉德-威利综合征患儿父母家庭管理困境及应对体验的质性研究[J]. 中华护理杂志, 2026, 61(16): 2225-2230.

ZHANG Junyu, MA Mingsheng, WEN Yongle, ZHAO Weiqian, SUN Jing, LI Yang. A qualitative study on the family management dilemma and coping experience of parents of children with Prader-Willi syndrome[J]. Chinese Journal of Nursing, 2026, 61(16): 2225-2230.

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参考文献 24

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普拉德-威利综合征患儿父母家庭管理困境及应对体验的质性研究

A qualitative study on the family management dilemma and coping experience of parents of children with Prader-Willi syndrome

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