大疱性表皮松解症患儿照护者照护行为促进与障碍因素的质性研究

doi:10.3761/j.issn.0254-1769.2026.19.013

中华护理杂志 ›› 2026, Vol. 61 ›› Issue (19): 2684-2690.DOI: 10.3761/j.issn.0254-1769.2026.19.013

大疱性表皮松解症患儿照护者照护行为促进与障碍因素的质性研究

王春婷¹(), 陈劼²^,^*(), 马丽丽³, 姜媛媛⁴, 罗梦雨³

¹ 复旦大学护理学院上海市 200032
² 复旦大学附属儿科医院公共卫生科上海市 201102
³ 复旦大学附属儿科医院创面诊疗中心上海市 201102
⁴ 复旦大学附属儿科医院骨科上海市 201102

收稿日期:2025-11-19 出版日期:2026-10-10 发布日期:2026-09-28
*通讯作者: 陈劼，E-mail：jiefd2005@aliyun.com
作者简介:王春婷：女，本科（硕士在读），护士，E-mail：1044175708@qq.com
第一联系人：作者贡献声明
王春婷：研究设计、资料分析、论文撰写；陈劼、马丽丽：研究指导、论文审阅与修改、基金支持；姜媛媛、罗梦雨：资料收集
基金资助:
上海申康医院发展中心研究型医师创新转化能力培训项目(SHDC2023CRS022)

A qualitative study on facilitators and barriers to caregiving behaviors among caregivers of children with epidermolysis bullosa

WANG Chunting¹(), CHEN Jie²^,^*(), MA Lili³, JIANG Yuanyuan⁴, LUO Mengyu³

¹ School of Nursing， Fudan University， Shanghai 200032， China
² Department of Public Health， Children’s Hospital of Fudan University， Shanghai 201102， China
³ Wound Care Center， Children’s Hospital of Fudan University， Shanghai 201102， China
⁴ Department of Orthopedics， Children’s Hospital of Fudan University， Shanghai 201102， China

Received:2025-11-19 Online:2026-10-10 Published:2026-09-28
* Corresponding author: CHEN Jie，E-mail：jiefd2005@aliyun.com
Funding program:
Shanghai Shenkang Hospital Development Center，Training Program on Innovative Translational Capacity for Research-Oriented Physicians(SHDC2023CRS022)

摘要/Abstract

摘要：

目的基于能力、机会、动机-行为模型，探讨大疱性表皮松解症患儿照护者在居家环境中实施照护行为的促进因素及障碍因素，为构建针对性的居家照护支持与干预策略提供依据。方法采用描述性质性研究方法，于2025年2—4月通过目的抽样法，选取12名大疱性表皮松解症患儿的照护者进行半结构式访谈。采用定向内容分析法对资料进行归类与提炼，提取照护行为的促进因素及障碍因素。结果共提炼出12个亚主题，包括6个促进因素和6个障碍因素。促进因素包括：能力因素（预防性照护经验的积累、反复实践促进伤口护理操作熟练化）、机会因素（病友群体的信息与情感支持、家庭成员的协作与分担）、动机因素（为减轻患儿痛苦决定主动学习、照护成效与患儿回应带来的价值感）。障碍因素包括：能力因素（照护知识的实践转化能力欠缺、成长阶段照护应对能力不足）、机会因素（专业医疗资源可及性有限、经济压力下护理用品选择受限）、动机因素（长期居家照护下的负性情绪累积、居家照护中的暂时性回避）。结论大疱性表皮松解症患儿居家照护行为的有效实施依赖照护者能力支持、照护环境条件及内在动机的共同作用。护士应在确诊及随访阶段提供分阶段居家护理指导，促进家庭协作与专业引导下的同伴支持，并通过及时反馈与情绪支持，促进照护行为的持续与安全实施。

关键词: 大疱性表皮松解症, 照护者, 照护行为, 居家护理, 能力、机会、动机-行为模型, 质性研究

Abstract:

Objective To explore the facilitators and barriers influencing home-based caregiving behaviors among caregivers of children with epidermolysis bullosa（EB） based on the Capability-Opportunity-Motivation-Behavior （COM-B） model，and to provide evidence for developing targeted home-based caregiving support and intervention strategies. Methods A descriptive qualitative study was conducted. From February to April 2025，12 caregivers of children with EB were recruited using purposive sampling and participated in semi-structured interviews. Directed content analysis was employed to categorize and synthesize the facilitators and barriers influencing caregiving behaviors. Results A total of 6 facilitators and 6 barriers were identified. Facilitators included：capability factors，namely the accumulation of preventive caregiving experience and the improvement of wound care skills through repeated practice；opportunity factors，informational and emotional support from peer groups and collaboration and shared responsibility among family members；motivation factors，active learning to alleviate children’s suffering and a sense of value derived from caregiving outcomes and children’s responses. Barriers included：capability factors，namely insufficient ability to translate caregiving knowledge into practice and inadequate ability to cope with caregiving needs across developmental stages；opportunity factors，limited accessibility of professional healthcare resources and restricted choices of care supplies under financial pressure；motivation factors，accumulated negative emotions during long-term home-based caregiving and temporary avoidance in home care. Conclusion The effective implementation of home-based caregiving for children with epidermolysis bullosa relies on the combined influence of caregivers’ capabilities，environmental support，and intrinsic motivation. Nursing professionals should provide stage-specific home care guidance during diagnosis and follow-up，promote family collaboration and professionally guided peer support，and offer timely feedback and emotional support，so as to facilitate the continuity and safety of caregiving behaviors.

Key words: Epidermolysis Bullosa, Caregivers, Caregiving Behaviors, Home-Based Care, Capability-Opportunity-Motivation-Behavior Model, Qualitative Study

王春婷, 陈劼, 马丽丽, 姜媛媛, 罗梦雨. 大疱性表皮松解症患儿照护者照护行为促进与障碍因素的质性研究[J]. 中华护理杂志, 2026, 61(19): 2684-2690.

WANG Chunting, CHEN Jie, MA Lili, JIANG Yuanyuan, LUO Mengyu. A qualitative study on facilitators and barriers to caregiving behaviors among caregivers of children with epidermolysis bullosa[J]. Chinese Journal of Nursing, 2026, 61(19): 2684-2690.

图/表 1

参考文献 28

[1]	Retrosi C, Diociaiuti A, De Ranieri C, et al. Multidisciplinary care for patients with epidermolysis bullosa from birth to adolescence:experience of one Italian reference center[J]. Ital J Pediatr, 2022, 48(1):58. DOI PMID
[2]	于越乾, 暴芳芳, 刘红. 遗传性大疱性表皮松解症致病基因研究进展[J]. 中国麻风皮肤病杂志, 2019, 35(6):380-384.
	Yu YQ, Bao FF, Liu H. Progress in the study of pathogenic genes in hereditary epidermolysis bullosa[J]. China J Lepr Skin Dis, 2019, 35(6):380-384.
[3]	Mariath LM, Santin JT, Schuler-Faccini L, et al. Inherited epi-dermolysis bullosa:update on the clinical and genetic aspects[J]. Anais Brasileiros De Dermatol, 2020, 95(5):551-569. DOI URL
[4]	Has C, Bauer JW, Bodemer C, et al. Consensus reclassification of inherited epidermolysis bullosa and other disorders with skin fragility[J]. Br J Dermatol, 2020, 183(4):614-627. DOI URL
[5]	Mauritz PJ, Bolling M, Duipmans JC, et al. Patients’ and parents’ experiences during wound care of epidermolysis bullosa from a dyadic perspective:a survey study[J]. Orphanet J Rare Dis, 2022, 17(1):313. DOI PMID
[6]	Sambasivam R, Liu JL, Vaingankar JA, et al. The hidden pa-tient:chronic physical morbidity,psychological distress,and quality of life in caregivers of older adults[J]. Psychogeriatrics, 2019, 19(1):65-72. DOI PMID
[7]	王竹敏, 田冰洁, 杨伟琴, 等. 遗传性大疱性表皮松解症患者主要照护者生活质量现况及其影响因素[J]. 军事护理, 2024, 41(5):63-66.
	Wang ZM, Tian BJ, Yang WQ, et al. The quality of life among primary caregivers of patients with epidermolysis bullosa and its influencing factors[J]. Mil Nurs, 2024, 41(5):63-66.
[8]	Willmott TJ, Pang B, Rundle-Thiele S. Capability,opportunity,and motivation:an across contexts empirical examination of the COM-B model[J]. BMC Public Health, 2021, 21(1):1014. DOI PMID
[9]	Biderman A, Carmel S, Amar S, et al. Care for caregivers:a mis-sion for primary care[J]. BMC Fam Pract, 2021, 22(1):227. DOI PMID
[10]	陈劼, 吕军, 周迎春, 等. 遗传性大疱性表皮松解症367例问卷调查[J]. 中华皮肤科杂志, 2020, 53(2):136-138.
	Chen J, Lü J, Zhou YC, et al. A questionnaire survey in 367 patients with hereditary epidermolysis bullosa[J]. Chin J Der-matol, 2020, 53(2):136-138.
[11]	Liu ZY, Chen CC, Hu YL. Factors related to the quality of life of family cancer caregivers[J]. Front Psychiatry, 2023, 14:1180317. DOI URL
[12]	Hsieh HF, Shannon SE. Three approaches to qualitative con-tent analysis[J]. Qual Health Res, 2005, 15(9):1277-1288. DOI URL
[13]	Lombo-Caicedo JC, Durán-Sabogal RM, Palacio-Abello JD, et al. Intervention to strengthen caregiving capacities among rural caregivers:a replicable model[J]. Front Med, 2025, 12:1613937.
[14]	Kabajaasi O, Trawin J, Derksen B, et al. Transitions from hos-pital to home:a mixed methods study to evaluate pediatric discharges in Uganda[J]. PLOS Glob Public Health, 2023, 3(9):e0002173.
[15]	Sandquist M, Davenport T, Monaco J, et al. The transition to adulthood for youth living with rare diseases[J]. Children, 2022, 9(5):710. DOI URL
[16]	Talevski J, Wong Shee A, Rasmussen B, et al. Teach-back:a systematic review of implementation and impacts[J]. PLoS One, 2020, 15(4):e0231350.
[17]	Winger A, Kvarme LG, Løyland B, et al. Family experiences with palliative care for children at home:a systematic litera-ture review[J]. BMC Palliat Care, 2020, 19(1):165. DOI
[18]	Daynes-Kearney R, Gallagher S. Online support groups for fa-mily caregivers:scoping review[J]. J Med Internet Res, 2023, 25:e46858.
[19]	肖润希, 周英凤. 妊娠期糖尿病患者孕期参与体力活动促进及障碍因素的质性研究[J]. 中华护理杂志, 2025, 60(14):1683-1689. DOI URL
	Xiao RX, Zhou YF. Facilitators and barriers of physical activity participation among women with gestational diabetes mellitus during pregnancy:a qualitative study[J]. Chin J Nurs, 2025, 60(14):1683-1689.
[20]	Gorell ES, Wolstencroft PW, de Souza MP, et al. Financial bur-den of epidermolysis bullosa on patients in the United States[J]. Pediatric Dermatology, 2020, 37(6):1198-1201. DOI URL
[21]	Chow AJ, Saad A, Al-Baldawi Z, et al. Family-centred care in-terventions for children with chronic conditions:a scoping review[J]. Health Expect, 2024, 27(1):e13897. DOI URL
[22]	李莹, 孙文欣, 孙芙蓉, 等. 住院患者出院准备服务管理平台的构建与应用研究[J]. 中华护理杂志, 2025, 60(16):2002-2008. DOI URL
	Li Y, Sun WX, Sun FR, et al. Construction and application of an inpatient hospital discharge preparation service mana-gement platform[J]. Chin J Nurs, 2025, 60(16):2002-2008.
[23]	Hosseini SJ, Ramezani M, Ashrafzadeh F, et al. Motivation in caregiving among mothers of children with intellectual and developmental disabilities in Iran:a qualitative study[J]. BMC Pediatr, 2024, 24(1):472. DOI PMID
[24]	吴安琪, 张媛媛, 李倩, 等. 先天性巨结肠患儿家庭照护者照顾能力影响因素的混合研究[J]. 中华护理杂志, 2025, 60(18):2238-2245. DOI URL
	Wu A, Zhang Y, Li Q, et al. Influencing factors of family care-givers’ caregiving capacity for children with Hirschsprung’s disease:a mixed-method study[J]. Chin J Nurs, 2025, 60(18):2238-2245.
[25]	Khalili H, Karimi Moonaghi H, Kianifar HR, et al. Parental ca-reügiving experiences in epidermolysis bullosa:a phenome-nological study[J]. Int J Community Based Nurs Midwifery, 2025, 13(2):149-160. DOI PMID
[26]	Basile NL, Chardon ML, Peugh J, et al. Relationship between caregiver uncertainty,problem-solving,and psychological adjust-ment in pediatric cancer[J]. J Pediatr Psychol, 2021, 46(10):1258-1266. DOI URL
[27]	Wang J, Li XL, Liu WC, et al. The positive aspects of caregi-ving in dementia:a scoping review and bibliometric analysis[J]. Front Public Health, 2022, 10:985391. DOI URL
[28]	Martin K, Geuens S, Asche JK, et al. Psychosocial recommen-dations for the care of children and adults with epidermo-lysis bullosa and their family:evidence based guidelines[J]. Orphanet J Rare Dis, 2019, 14(1):133. DOI PMID

大疱性表皮松解症患儿照护者照护行为促进与障碍因素的质性研究

A qualitative study on facilitators and barriers to caregiving behaviors among caregivers of children with epidermolysis bullosa

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