儿童结核病患者父母照护体验及需求的质性研究

doi:10.19983/j.issn.2096-8493.2024135

摘要/Abstract

摘要：

目的: 深入了解儿童结核病患者父母的照护体验及需求,为制定相应的护理支持方案提供依据。方法: 采用现象学研究方法,通过目的抽样选取2022年12月至2023年4月上海市公共卫生临床中心结核科13例儿童结核病患者的父母作为研究对象,进行半结构式访谈,收集相关资料。采用Colaizzi现象学7步分析法并借助Nvivo 12软件分析资料提炼主题。结果: 13名受访的结核病患儿的父母,10名(76.92%)经历了复杂的情绪反应,8名(61.54%)感知生活状态发生变化,7名(53.85%)认为能够主动调适积极应对,11名(84.62%)渴望专业的支持与帮助。结论: 儿童结核病患者的父母存在一定程度的照顾负荷,影响着身心健康。医护人员应为其提供情感、技能、社会等多方面支持,以促进患儿父母的正性照护体验,改善父母及患儿的整体生活质量。

关键词: 结核, 儿童, 父亲, 母亲, 护理, 定性研究

Abstract:

Objective: To deeply understand the care experience and needs of parents caring for children with tuberculosis, and to provide basis for the development of corresponding nursing support programs. Methods: This was a phenomenological study. Purposive sampling was used to select 13 children with tuberculosis in the Tuberculosis Department of Shanghai Public Health Clinical Center from December 2022 to April 2023 as the research objects and semi-structured interviews were conducted to collect relevant data. The Colaizzi phenomenological 7-step analysis method and Nvivo 12 software were used to analyze the data and refine the theme. Results: Among the 13 parents of children with tuberculosis interviewed, 10 cases (76.92%) experienced complex emotional reactions, 8 cases (61.54%) perceived work life changes, 7 cases (53.85%) believed that they could actively adjust and respond positively, and 11 cases (84.62%) were eager for professional support and help. Conclusion: The parents of children with tuberculosis have a certain degree of care burden, which affects their physical and mental health. Medical staff should provide emotional, skill, social and other aspects of support to promote the positive care experience of parents of children with tuberculosis and improve the overall quality of life of parents and children.

Key words: Tuberculosis, Child, Fathers, Mothers, Nursing care, Qualitative research

中图分类号:

魏潇雯, 董宁, 沈蕾, 陶永红, 吴元浩, 张林. 儿童结核病患者父母照护体验及需求的质性研究[J]. 结核与肺部疾病杂志, 2024, 5(6): 505-510. doi: 10.19983/j.issn.2096-8493.2024135

Wei Xiaowen, Dong Ning, Shen Lei, Tao Yonghong, Wu Yuanhao, Zhang Lin. The lived experience and needs of parents caring for children with tuberculosis: a qualitative study[J]. Journal of Tuberculosis and Lung Disease, 2024, 5(6): 505-510. doi: 10.19983/j.issn.2096-8493.2024135

图/表 1

参考文献 19

[1]	王前, 王嘉, 李玉红, 等. 重视儿童结核病防治关爱儿童健康. 中国防痨杂志, 2023, 45 (1): 1-5. doi:10.19982/j.issn.1000-6621.20220462.
[2]	World Health Organization. Global tuberculosis report 2023. Geneva: World Health Organization, 2023.
[3]	舒薇, 刘宇红. 世界卫生组织《2023年全球结核病报告》解读. 结核与肺部疾病杂志, 2024, 5(1): 15-19. doi:10.19983/j.issn.2069-8493.2024006.
[4]	World Health Organization. WHO consolidated guidelines on tuberculosis: module 4: treatment: tuberculosis care and support. Geneva: World Health Organization, 2023.
[5]	Leddy AM, Jaganath D, Triasih R, et al. Social Determinants of Adherence to Treatment for Tuberculosis Infection and Disease Among Children, Adolescents, and Young Adults: A Narrative Review. J Pediatric Infect Dis Soc, 2022, 11(Supplement_3):S79-S84. doi:10.1093/jpids/piac058. pmid: 36314549
[6]	姚蓉, 雷丽梅, 杨婷, 等. 结核病住院患儿家庭照顾者的照顾负担与焦虑现状及其相关性分析. 解放军护理杂志, 2021, 38(10):32-35. doi:10.3969/j.issn.1008-9993.2021.10.009.
[7]	Awaluddin SM, Ismail N, Yasin SM, et al. Parents’ Expe-riences and Perspectives Toward Tuberculosis Treatment Success Among Children in Malaysia: A Qualitative Study. Front Public Health, 2020, 8: 577407. doi:10.3389/fpubh.2020.577407.
[8]	中华医学会结核病学分会儿童结核病专业委员会, 中国研究型医院学会结核病学专业委员会, 国家呼吸系统疾病临床医学研究中心, 等. 儿童肺结核诊断专家共识. 中国实用儿科临床杂志, 2022, 37(7):490-496. doi:10.3760/cma.j.cn101070-20211207-01436.
[9]	Tornu E, Dzansi G, Wilson DM, et al. Mothers’ perspectives of physical and psychological issues associated with caring for Ghanaian children living with tuberculosis: A qualitative study. Nurs Open, 2023, 10(4):2439-2448. doi:10.1002/nop2.1499.
[10]	刘明. Colaizzi七个步骤在现象学研究资料分析中的应用. 护理学杂志, 2019, 34(11): 90-92. doi:10.3870/j.issn.1001-4152.2019.11.090.
[11]	Petros de Guex K, Augustino D, Mejan P, et al. Roadblocks and resilience: A qualitative study of the impact of pediatric tuberculosis on Tanzanian households and solutions from caregivers. Glob Public Health, 2023, 18(1): 2196569. doi:10.1080/17441692.2023.2196569.
[12]	Das M, Mathur T, Ravi S, et al. Challenging drug-resistant TB treatment journey for children, adolescents and their care-givers: A qualitative study. PLoS One, 2021, 16(3): e0248408. doi:10.1371/journal.pone.0248408.
[13]	姚晓伟, 赵桂松, 张宏媛, 等. 儿童复治脊柱结核手术治疗一例. 结核与肺部疾病杂志, 2023, 4(3):255-258. doi:10.19983/j.issn.2096-8493.20230043.
[14]	Adusumelli Y, Tabatneck M, Sherman S, et al. Pediatric Tuberculosis Infection Care Facilitators and Barriers: A Qualitative Study. Pediatrics, 2024, 153(3): e2023063949. doi:10.1542/peds.2023-063949.
[15]	Loveday M, Sunkari B, Master I, et al. Household context and psychosocial impact of childhood multidrug-resistant tuberculosis in KwaZulu-Natal, South Africa. Int J Tuberc Lung Dis, 2018, 22(1): 40-46. doi:10.5588/ijtld.17.0371. pmid: 29297424
[16]	Chiang SS, Senador L, Altamirano E, et al. Adolescent, caregiver and provider perspectives on tuberculosis treatment adherence: a qualitative study from Lima, Peru. BMJ Open, 2023, 13(5): e069938. doi:10.1136/bmjopen-2022-069938.
[17]	Misra S, Misra N, Seepamore B, et al. “I would watch her with awe as she swallowed the first handful”: A qualitative study of pediatric multidrug-resistant tuberculosis experiences in Durban, South Africa. PLoS One, 2022, 17(9): e0274741. doi:10.1371/journal.pone.0274741.
[18]	牛敏瑞, 董树婉, 汪惠才, 等. 家庭主义视角下父母与癌症患儿疾病沟通体验的质性研究. 中国医学伦理学, 2023, 36(4): 449-455. doi:10.12026/j.issn.1001-8565.2023.04.16.
[19]	Zvonareva O, Witte S, Kabanets N, et al. Adolescents in a tuberculosis hospital: Qualitative study of how relationships with doctors, caregivers, and peers mediate their mental wellbeing. PLoS One, 2021, 16(10): e0257379. doi:10.1371/journal.pone.0257379.

例号	患儿父母					患儿
例号	性别	年龄(岁)	文化程度	居住地	角色	性别	年龄(岁)	确诊时长(月)	结核病类型
P1	女	36	高中	浙江	母亲	男	3	1	淋巴结结核
P2	女	40	大专	上海	母亲	女	10	1.5	结核性胸膜炎
P3	女	42	初中	浙江	母亲	男	13	2	肺结核
P4	女	46	高中	河南	母亲	女	12	3	肾结核
P5	女	38	本科	上海	母亲	女	6	3	结核性胸膜炎
P6	女	38	本科	上海	母亲	女	5	2	肺结核
P7	男	35	高中	安徽	父亲	男	6	4	髋关节结核
P8	女	34	初中	浙江	母亲	女	9	2	膝关节结核
P9	女	28	高中	湖北	母亲	男	2	4	淋巴结结核
P10	男	35	本科	上海	父亲	男	6	3	肺结核
P11	女	37	初中	江西	母亲	女	8	3	肘关节结核
P12	女	29	初中	安徽	母亲	男	2	4	胫骨结核
P13	男	36	大专	上海	父亲	男	8	1.5	肺结核