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

doi:10.3761/j.issn.0254-1769.2025.18.010

摘要/Abstract

摘要：

目的探讨先天性巨结肠（Hirschsprung’s disease，HD）患儿家庭照护者的照顾能力现状及其影响因素，为制订家庭赋能的居家护理方案提供依据。方法基于解释性序列混合方法研究设计，采用便利抽样法，选取2019年7月—2024年7月上海市某三级甲等儿科医院小儿外科收治的308名HD患儿家庭照护者作为调查对象，通过一般资料调查表、Zarit照顾者负担量表、家庭照护者照顾能力测量表进行调查；于2024年8—12月对15名照顾能力较差的HD患儿照护者进行半结构访谈。定量数据采用非参数检验和多元线性回归分析，定性资料通过Colaizzi 7步分析法提炼主题。结果最终回收有效问卷281份。HD患儿家庭照护者照顾能力测量表得分为12.00（6.00，20.00）分。多元线性回归分析结果显示，患儿疾病所处时期、肠炎发生次数，照护者居住地、家庭月收入及照顾负担是HD患儿家庭照护者照顾能力的影响因素（P<0.05）。定性研究提炼出4个主题：持续多维动态挑战、专业照护能力断层、支持系统多重受限和角色矩阵超载压力。混合研究结果显示：定性研究与定量研究中“疾病所处时期”表现为拓展性，“肠炎发生次数”“居住地”“家庭月收入”和“照顾负担”表现为补充性。结论 HD患儿家庭照护者面临多维挑战与多重负担，需构建以家庭为中心的动态持续支持体系，针对性提升其专业照护能力与社会资源可及性。

关键词: 先天性巨结肠, 家庭照护者, 照顾能力, 混合研究, 居家护理, 儿科护理学

Abstract:

Objective To evaluate the caregiving capacity of family caregivers of children with hirschsprung’s disease（HD） and to establish an evidence base for developing family-empowered home care interventions. Methods An explanatory sequential mixed-method design was employed. A total of 308 family caregivers of HD patients admitted to the Pediatric Surgery Department of a tertiary children’s hospital in Shanghai，were enrolled from July 2019 to July 2024. Quantitative data were collected in 2024 using a demographic questionnaire，the Zarit Caregiver Burden Interview and the Family Caregiver Task Inventory. Semi-structured interviews were conducted in August to December 2024 with 15 caregivers of children with HD with poor caregiving skills. Quantitative data were analyzed using nonparametric tests and multiple linear regression，and qualitative information was refined through Colaizzi’s 7-step analysis of themes. Results In the end，281 valid questionnaires were recovered. The total caregiving competence was 12.00（6.00，20.00）. Multivariate analysis identified significant predictors of caregiving competence，including children in the postoperative dilation period，frequency of enterocolitis episodes，place of residence monthly household income and burden of caregiving were the factors influencing the ability of family caregivers to take care of their children（P<0.05）. Qualitative analysis revealed 4 themes：persistent multidimensional adaptive challenges，disparity in clinical caregiving skills，systemic support limitations，and role multiplicity strain. Conclusion Family caregivers of children with HD face multidimensional stressors，necessitating a dynamic，family-centered support ecosystem. Strategic interventions should focus on enhancing clinical caregiving literacy while improving access to socioeconomic resources and establishing role-specific support networks.

Key words: Hirschsprung’s Disease, Family Caregivers, Caregiving Capacity, Mixed-Method Study, Home Care, Pediatric Nursing

吴安琪, 张媛媛, 李倩, 严志龙, 吴捷, 章雅青. 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.

WU Anqi, ZHANG Yuanyuan, LI Qian, YAN Zhilong, WU Jie, ZHANG Yaqing. Influencing factors of family caregivers’ caregiving capacity for children with Hirschsprung’s disease：a mixed-method study[J]. Chinese Journal of Nursing, 2025, 60(18): 2238-2245.

图/表 4

表1 先天性巨结肠患儿与其照护者的一般资料及照护者照顾能力的单因素分析结果（n=281）

Table 1 The general information of children with HD and their caregivers，and the univariate analysis results of the caregivers’ caregiving capacity（n=281）

表2 自变量赋值方式

Table 2 Independent variable assignment methods

表3 先天性巨结肠患儿家庭照护者照顾能力的多元线性回归分析（n=281）

Table 3 Multiple linear regression analyses of factors of caregiving capacity of family caregivers（n=281）

表4 定量、定性研究结果及结果间的关系

Table 4 Quantitative and qualitative findings and relationship between findings

参考文献 27

[1]	Tam PKH. Hirschsprung’s disease:a bridge for science and surgery[J]. J Pediatr Surg, 2016, 51(1):18-22.
[2]	中华医学会小儿外科学分会肛肠学组,新生儿学组. 先天性巨结肠的诊断及治疗专家共识[J]. 中华小儿外科杂志, 2017, 38(11):805-815.
	The Group of Anorectum,the Group of Neonatology,the Socie-ty of Pediatric Surgery,Chinese Medical Association. The gui-delines of diagnosis and treatment of Hirschspung’s disease[J]. Chin J Pediatr Surg, 2017, 38(11):805-815.
[3]	谢华, 唐维兵. 规范、统一先天性巨结肠分型的建议[J]. 临床小儿外科杂志, 2021, 20(3):212-216.
	Xie H, Tang WB. Unifying the classification of Hirschsprung’s disease[J]. J Clin Pediatr Surg, 2021, 20(3):212-216.
[4]	路航, 唐杰, 唐维兵. 经典型先天性巨结肠手术时机与术前肠道管理的研究进展[J]. 临床小儿外科杂志, 2024, 23(4):395-400.
	Lu H, Tang J, Tang WB. Research advances on operative tim-ing and preoperative bowel management of classic Hirsch-sprung disease[J]. J Clin Pediatr Surg, 2024, 23(4):395-400.
[5]	Mueller JL, Goldstein AM. The science of Hirschsprung di-sease:what we know and where we are headed[J]. Semin Pediatr Surg, 2022, 31(2):151157.
[6]	Amin LL, Skoglund C, Wester T, et al. Swedish national popu-lation-based study shows an increased risk of depression among patients with Hirschsprung disease[J]. Acta Paediatr, 2019, 108(10):1867-1870.
[7]	Fang YY, Kang YL, Teng LJ, et al. A qualitative study on the caregiver burden experience in home reflux enema manage-ment of infants with congenital megacolon[J]. Int J Qual Stud Health Well-being, 2024, 19(1):2289225.
[8]	Figueroa LM, Soto M, Martínez J. Experiences of parents and/or caretakers of children with Hirschsprung’s disease or anorectal malformations during follow-up after pediatric surgery[J]. Biome-dica, 2019, 39(1):147-156.
[9]	吴金花, 倪志红, 赵雪萍, 等. 肠造口新生儿家长照护体验的质性研究[J]. 中华护理杂志, 2021, 56(11):1627-1633. DOI
	Wu JH, Ni ZH, Zhao XP, et al. Caring experiences of parents of neonates with enterostomy:a qualitative study[J]. Chin J Nurs, 2021, 56(11):1627-1633.
[10]	Evans-Barns HME, Hall M, Trajanovska M, et al. Psychosocial outcomes of parents of children with Hirschsprung disease be-yond early childhood[J]. J Pediatr Surg, 2024, 59(4):694-700.
[11]	Farran CJ, McCann JJ, Fogg LG, et al. Developing a measure-ment strategy for assessing family caregiver skills:conceptual issues[J]. Alzheimers care today, 2009, 10(3):129-139. DOI PMID
[12]	Clark NM, Rakowski W. Family caregivers of older adults:im-proving helping skills[J]. Gerontologist, 1983, 23(6):637-642. PMID
[13]	Lee RLT, Mok ESB. Evaluation of the psychometric properties of a modified Chinese version of the Caregiver Task Inven-tory:refinement and psychometric testing of the Chinese Care-giver Task Inventory:a confirmatory factor analysis[J]. J Clin Nurs, 2011, 20(23/24):3452-3462.
[14]	Zarit SH, Reever KE, Bach-Peterson J. Relatives of the im-paired elderly:correlates of feelings of burden[J]. Gerontologist, 1980, 20(6):649-655. DOI PMID
[15]	王烈, 杨小湜, 侯哲, 等. 护理者负担量表中文版的应用与评价[J]. 中国公共卫生, 2006, 22(8):970-972.
	Wang L, Yang XS, Hou Z, et al. Application and evaluation of Chinese version of Zarit Caregiver Burden Interview[J]. Chin J Public Health, 2006, 22(8):970-972.
[16]	Nowell LS, Norris JM, White DE, et al. Thematic analysis[J]. Int J Qual Meth, 2017, 16(1):1609406917733847.
[17]	Milbery JA, Curry J. Hirschsprung disease:the role of the cli-nical nurse specialist[J]. Children(Basel), 2024, 11(5):587.
[18]	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 nurs-ing enlightenment on family resilience of children with chro-nic diseases[J]. Chin J Nurs, 2023, 58(12):1523-1528.
[19]	Gosain A, Frykman PK, Cowles RA, et al. Guidelines for the diagnosis and management of Hirschsprung-associated ente-rocolitis[J]. Pediatr Surg Int, 2017, 33(5):517-521.
[20]	Koo FEC, Chan MCE, King SK, et al. The early years:Hirschs-prung disease and health-related quality of life[J]. Qual Life Res, 2023, 32(12):3327-3337.
[21]	Rosen N, Holder M. What parents need to know about Hirs-chsprung disease[J]. Semin Pediatr Surg, 2022, 31(2):151159.
[22]	梅伶俐, 凌云, 胡艳, 等. 短肠综合征继发肠衰竭患儿父母营养照护体验的质性研究[J]. 中华护理杂志, 2023, 58(20):2452-2458. DOI
	Mei LL, Ling Y, Hu Y, et al. The nutritional care experience of families of children with intestinal failure secondary to short bowel syndrome:a qualitative study[J]. Chin J Nurs, 2023, 58(20):2452-2458.
[23]	Olsbø S, Kiserud SG, Hermansen Å, et al. Health literacy in parents of children with Hirschsprung disease:a novel study[J]. Pediatr Surg Int, 2024, 41(1):21.
[24]	Abbasiasl H, Hakim A, Zarea K. Explaining the care experien-ces of mothers of children with Hirschsprung’s disease:a quali-tative study[J]. Glob Pediatr Health,2021,8:2333794X21101-5520.
[25]	Koyun E, Suluhan D. The relationship between the caregiver burden and quality of life in parents of Turkish children with anorectal malformation or Hirschsprung’s disease[J]. J Pe-diatr Nurs,2024,77:e420-e425.
[26]	Hall J, Schletker J, Judd-Glossy L, et al. A review of adopted colorectal patients:a parent’s perspective[J]. Pediatr Surg Int, 2021, 37(4):431-435. DOI PMID
[27]	Sugesh A, Kaur S, Sharma S, et al. “HASSLES” in caring a child suffering from anorectal malformation with colostomy:a phenomenological study[J]. Nurs Midwifery Res J, 2022, 18(1):45-53.