先天性心脏病术后患儿父母居家照护需求质性研究的Meta整合

doi:10.3761/j.issn.0254-1769.2026.16.016

摘要/Abstract

摘要：

目的系统评价和整合先天性心脏病（congenital heart disease，CHD）术后患儿父母居家照护需求的质性研究，为制订以家庭为中心的照护支持方案提供参考。方法系统检索PubMed、Web of Science、Embase、Cochrane Library、中国知网、万方数据库、维普数据库、中国生物医学文献数据库中有关CHD术后患儿父母居家照护需求的质性研究，检索时限为建库至2026年1月。采用澳大利亚乔安娜布里格斯研究所循证卫生保健中心质性研究质量评价标准对研究进行方法学质量评价，运用汇集性整合方法进行结果整合。结果共纳入10篇文献，提炼出20个研究结果，归纳为7个类别，形成3个整合结果。①患儿康复与发展的核心需求，包括疾病相关信息需求、照护技能需求、延续性与专业性医疗服务需求；②作为照护者的生活维持需求，包括生理健康维护需求、经济与职业保障需求；③情感与社会认同需求，包括情感支持需求、被社会公平对待的需求。结论 CHD患儿父母在居家照护过程中存在多维度、多层次的照护需求，需构建医院-社区-家庭协同的支持机制，完善信息与技能培训体系，加强心理与社会支持，以提升照护质量与家庭适应能力。

关键词: 先天性心脏病, 父母, 居家照护, 需求, 质性研究, Meta整合, 循证护理学

Abstract:

Objective To systematically integrate qualitative studies on the home care needs of parents of children after congenital heart disease（CHD） surgery，in order to provide references for the development of family-centered care support programs. Methods A systematic search was conducted for qualitative studies on the home care needs of parents of children with CHD in databases including PubMed，Web of Science，Embase，Cochrane Library，CNKI，WanFang Database，VIP，and CBM. The search period was from the establishment of the database to January 2026. The quality of the literature was evaluated using the qualitative research appraisal criteria of the Joanna Briggs Institute（JBI） Evidence-Based Health Care Center，and the results were integrated using the pooled integration method. Results A total of 10 articles were included，from which 20 research findings were extracted and synthesized into 7 categories，ultimately forming 3 integrated findings. The core needs for child recovery and development include health information needs，caregiving skill needs，and needs for continuity and professional medical services. The living maintenance needs of parents as caregivers include needs for maintaining parents’ physical health，and parents’ economic and occupational security. The emotional and social recognition needs of parents include needs for emotional support and belonging，and needs for fair treatment by society. Conclusion Parents of children with CHD have multidimensional and multi-level care needs during home care. It is necessary to establish a hospital-community-family collaborative support mechanism，improve the information and skill training system，and strengthen psychological and social support to enhance the quality of care and family adaptation.

Key words: Congenital Heart Disease, Parents, Home Care, Needs, Qualitative Research, Meta-Synthesis, Evidence-Based Nursing

徐奇, 张晓彤, 李敏敏. 先天性心脏病术后患儿父母居家照护需求质性研究的Meta整合[J]. 中华护理杂志, 2026, 61(16): 2270-2276.

XU Qi, ZHANG Xiaotong, LI Minmin. Meta-synthesis of qualitative studies on home care needs of parents of children after congenital heart disease surgery[J]. Chinese Journal of Nursing, 2026, 61(16): 2270-2276.

图/表 2

参考文献 31

[1]	张茜, 刘亚飞, 李梦然, 等. 先天性心脏病患儿围生期护理管理专家共识[J]. 中华护理杂志, 2025, 60(5):552-557.
	Zhang Q, Liu YF, Li MR, et al. Expert consensus on perinatal care management of infants with congenital heart disease[J]. Chin J Nurs, 2025, 60(5):552-557.
[2]	Rossano JW. Congenital heart disease:a global public health concern[J]. Lancet Child Adolesc Health, 2020, 4(3):168-169. DOI PMID
[3]	Stout KK, Daniels CJ, Aboulhosn JA, et al. 2018 AHA/ACC guideline for the management of adults with congenital heart disease:a report of the American college of Cardiology/Ameri-can heart association task force on clinical practice guidelines[J]. Circulation, 2019, 139(14):e698-e800.
[4]	Bhatt AB, Foster E, Kuehl K, et al. Congenital heart disease in the older adult:a scientific statement from the American Heart Association[J]. Circulation, 2015, 131(21):1884-1931. DOI PMID
[5]	姜海英. 小儿先天性心脏病介入治疗并发症的护理现状[J]. 天津护理, 2016, 24(5):468-469. DOI
	Jiang HY. Nursing status of complications of interventional therapy for congenital heart disease in children[J]. Tianjin J Nurs, 2016, 24(5):468-469.
[6]	朱耀斌, 张雅娉, 李志强, 等. 术后快速康复在先天性心脏病患儿中应用的研究进展[J]. 中华实用诊断与治疗杂志, 2020, 34(5):538-540.
	Zhu YB, Zhang YP, Li ZQ, et al. Fast-track surgery in pediatric congenital heart disease[J]. J Chin Pract Diagn Ther, 2020, 34(5):538-540.
[7]	Azhar AS. Unplanned hospital readmissions following congenital heart diseases surgery:prevalence and predictors[J]. Saudi Med J, 2019, 40(8):802-809. DOI URL
[8]	沐惠, 安珊珊, 张杨, 等. 法洛四联症术后患儿母亲居家照顾需求的质性研究[J]. 中华现代护理杂志, 2017, 23(2):234-237.
	Mu H, An SS, Zhang Y, et al. Qualitative study on home care needs of mothers of children after undergoing tetralogy of fallot surgery[J]. Chin J Mod Nurs, 2017, 23(2):234-237.
[9]	许家萍, 张明慧, 王红蕊, 等. “互联网+”居家照护模式在老年慢性病患者居家护理中的应用[J]. 护理实践与研究, 2023, 20(20):3001-3007.
	Xu JP, Zhang MH, Wang HR, et al. Application of “Internet +” home care model in home care of elderly patients with chronic diseases[J]. Nurs Pract Res, 2023, 20(20):3001-3007.
[10]	胡雁, 郝玉芳. 循证护理学[M]. 2版. 北京: 人民卫生出版社, 2018.
	Hu Y, Hao YF. Evidence-based nursing[M]. 2nd ed. Beijing: People’s Medical Publishing House, 2018.
[11]	Lockwood C, Munn Z, Porritt K. Qualitative research synthe-sis:methodological guidance for systematic reviewers utilizing meta-aggregation[J]. Int J Evid Based Healthc, 2015, 13(3):179-187. DOI URL
[12]	Gaskin KL, Barron D, Wray J. Parents’ experiences of transi-tion from hospital to home after their infant’s first-stage cardiac surgery:psychological,physical,physiological,and fina-ncial survival[J]. J Cardiovasc Nurs, 2021, 36(3):283-292. DOI URL
[13]	Puriani D, Allenidekania A, Afiyanti Y. The experience of un-certainty in mothers caring for children at home after pallia-tive heart surgery[J]. Indian J Palliat Care, 2023, 29(1):46-50. DOI PMID
[14]	Tregay J, Brown K, Crowe S, et al. “I was so worried about every drop of milk”-feeding problems at home are a significant concern for parents after major heart surgery in infancy[J]. Matern Child Nutr, 2017, 13(2):e12302. DOI URL
[15]	Tregay J, Brown KL, Crowe S, et al. Signs of deterioration in infants discharged home following congenital heart surgery in the first year of life:a qualitative study[J]. Arch Dis Child, 2016, 101(10):902-908. DOI URL
[16]	Tregay J, Wray J, Crowe S, et al. Going home after infant car-diac surgery:a UK qualitative study[J]. Arch Dis Child, 2016, 101(4):320-325. DOI URL
[17]	安思兰, 陈京立. 先天性心脏病患儿术后母亲照护需求的质性研究[J]. 中华现代护理杂志, 2016, 22(1):104-108.
	An SL, Chen JL. Qualitative study on the needs of mother whose child with congenital heart disease[J]. Chin J Mod Nurs, 2016, 22(1):104-108.
[18]	王秋萍, 杨玲, 俞群, 等. 儿童先天性心脏病术后家属对心脏康复认知及需求的质性研究[J]. 教育生物学杂志, 2023, 11(1):48-53.
	Wang QP, Yang L, Yu Q, et al. Qualitative study on cognitive experience and needs of family members on cardiac reha-bilitation after surgery of children with congenital heart di-sease[J]. J Bio Educ, 2023, 11(1):48-53.
[19]	吴筱筱, 陈京立. 室间隔缺损修补术后患儿母亲居家护理需求质性研究[J]. 护理研究, 2014, 28(11):1333-1335.
	Wu XX, Chen JL. Qualitative study on home care needs of mothers of children after undergoing ventricular septal defect repair[J]. Chin Nurs Res, 2014, 28(11):1333-1335.
[20]	Ni ZH, Lü HT, Ding S, et al. Home care experience and nurs-ing needs of caregivers of children undergoing congenital heart disease operations:a qualitative descriptive study[J]. PLoS One, 2019, 14(3):e0213154. DOI URL
[21]	Pye S, Green A. Parent education after newborn congenital heart surgery[J]. Adv Neonatal Care, 2003, 3(3):147-156. PMID
[22]	许琴芳, 杨道平. “互联网+程序化健康教育”对先心病介入患儿生存质量及家长遵医行为的影响[J]. 临床医药文献电子杂志, 2020, 7(88):11-14.
	Xu QF, Yang DP. The influence of “Internet+programmed health education” on the quality of life of children with congenital heart disease and their parents’ compliance behavior[J]. J Clin Med Lit Electronic Edition, 2020, 7(88):11-14.
[23]	高珞珞, 王洁, 李文娟. 移动居家护理平台在骨质疏松性胸腰椎骨折患者延续护理中的应用[J]. 护理学杂志, 2019, 34(17):5-7,24.
	Gao LL, Wang J, Li WJ. Application of the mobile home care platform in the transitional care of patients with osteoporotic thoracolumbar fractures[J]. J Nurs Sci, 2019, 34(17):5-7,24.
[24]	原志芳, 林梅, 李星, 等. 母婴延续性健康管理平台的构建及应用[J]. 中华护理杂志, 2022, 57(18):2212-2216.
	Yuan ZF, Lin M, Li X, et al. Construction and application of post-hospital health management platform for maternity and infants[J]. Chin J Nurs, 2022, 57(18):2212-2216.
[25]	Amedro P, Gavotto A, Legendre A, et al. Impact of a centre and home-based cardiac rehabilitation program on the quality of life of teenagers and young adults with congenital heart disease:the QUALI-REHAB study rationale,design and me-thods[J]. Int J Cardiol, 2019, 283:112-118. DOI URL
[26]	Bowen M. The use of family theory in clinical practice[J]. Compr Psychiatry, 1966, 7(5):345-374. DOI URL
[27]	孙翔宇, 钱嘉璐, 王曼, 等. 慢性病患儿家庭抗逆力的研究进展及护理启示[J]. 中华护理杂志, 2023, 58(12):1523-1528. DOI
	Sun XY, Qian JL, Wang M, et al. Research progress and nursing enlightenment on family resilience of children with chronic diseases[J]. Chin J Nurs, 2023, 58(12):1523-1528. DOI
[28]	王晶, 李燕君, 徐芬, 等. 护士与医务社工及志愿者三位一体服务模式在先天性心脏病患儿中的应用[J]. 护理学杂志, 2022, 37(13):29-32.
	Wang J, Li YJ, Xu F, et al. Implementation of a trinity model of service involving nurses,social workers,and volunteers to children with congenital heart disease[J]. J Nurs Sci, 2022, 37(13):29-32.
[29]	丽扎·江阿别克, 阿扎玛提·阿扎提, 马荣, 等. 先天性心脏病患儿家庭经济负担及影响因素分析[J]. 中国卫生经济, 2024, 43(2):62-66.
	Liza Jiangabieke, Azamati Azati, Ma R, et al et al., Analysis of family economic burden and influencing factors in children with congenital heart disease[J]. Chin Health Econ, 2024, 43(2):62-66.
[30]	张兴艳. 小组工作介入先天性心脏病患儿妈妈压力舒缓的实务研究[D]. 郑州: 河南财经政法大学, 2023.
	Zhang XY. Group work on the practical study of stress relief in mothers of children with congenital heart disease[D]. Zhengzhou: Henan University of Economics and Law, 2023.
[31]	Powazki RD, Walsh D. The family conference in palliative medicine:a practical approach[J]. Am J Hosp Palliat Care, 2014, 31(6):678-684. DOI PMID