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姑息性心脏手术后母亲在家照顾孩子时的不确定性体验。

The Experience of Uncertainty in Mothers Caring for Children at Home after Palliative Heart Surgery.

作者信息

Puriani Dewi, Allenidekania Allenidekania, Afiyanti Yati

机构信息

Department of Paediatric Nursing, Faculty of Nursing, Universitas Indonesia, Depok, Indonesia.

出版信息

Indian J Palliat Care. 2023 Jan-Mar;29(1):46-50. doi: 10.25259/IJPC_453_20. Epub 2023 Jan 20.

DOI:10.25259/IJPC_453_20
PMID:36846277
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9944655/
Abstract

OBJECTIVES

Palliative heart surgery is a compelling option for some children with congenital heart disease for which corrective heart surgery is not yet possible due to its complexity. As primary caregivers, mothers have the challenge of providing optimal care to their children at home post-surgery. This study aims to explore the experiences of mothers who are caring for children recovering from palliative heart surgery at home. The research applied descriptive, qualitative and phenomenology design.

MATERIAL AND METHODS

This study was conducted in Jakarta. The participants were 15 mothers of palliative heart surgery patients from seven provinces in Indonesia; Jakarta, Aceh, Bali, North Sumatra, West Java, Central Java and Banten. Data were collected using semi-structured interviews through the WhatsApp video call application and analysed using the Colaizzi method.

RESULTS

Mothers often felt uncertain about how to provide the best care and felt that their needs for hospital services to assist them went unmet. This study has implications for the development of nursing services related to discharge planning for palliative heart surgery patients.

摘要

目的

对于一些患有先天性心脏病但由于病情复杂而无法进行矫正心脏手术的儿童来说,姑息性心脏手术是一种颇具吸引力的选择。作为主要照顾者,母亲们面临着在孩子术后在家中提供最佳护理的挑战。本研究旨在探索在家中照顾接受姑息性心脏手术后正在康复的孩子的母亲们的经历。该研究采用了描述性、定性和现象学设计。

材料与方法

本研究在雅加达进行。参与者为来自印度尼西亚七个省份(雅加达、亚齐、巴厘岛、北苏门答腊、西爪哇、中爪哇和万丹)的15名姑息性心脏手术患者的母亲。通过WhatsApp视频通话应用程序使用半结构化访谈收集数据,并采用科莱齐法进行分析。

结果

母亲们常常对如何提供最佳护理感到不确定,并觉得她们对医院协助她们的服务需求未得到满足。本研究对与姑息性心脏手术患者出院计划相关的护理服务发展具有启示意义。

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本文引用的文献

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Coping with Caregiving Stress in Families of Children with Congenital Heart Disease: A Qualitative Study.先天性心脏病患儿家庭应对照料压力的质性研究
Int J Community Based Nurs Midwifery. 2020 Apr;8(2):127-139. doi: 10.30476/IJCBNM.2020.83029.1113.
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Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study.先天性心脏病手术患儿照顾者的家庭护理体验和护理需求:一项定性描述性研究。
PLoS One. 2019 Mar 14;14(3):e0213154. doi: 10.1371/journal.pone.0213154. eCollection 2019.
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Need for Routine Screening of Health-Related Quality of Life in Families of Young Children with Complex Congenital Heart Disease.有必要对患有复杂先天性心脏病的幼儿家庭进行健康相关生活质量的常规筛查。
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Parents' Experiences of Caring for Their Child at the Time of Discharge After Cardiac Surgery and During the Postdischarge Period: Qualitative Study Using an Online Forum.心脏手术后出院时及出院后父母照顾孩子的经历:使用在线论坛的定性研究
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Phenomenology Study on Nurses' Experiences in Understanding the Comfort of Children at the End-of-Life.护士对临终儿童舒适度理解体验的现象学研究
Indian J Palliat Care. 2018 Apr-Jun;24(2):162-166. doi: 10.4103/IJPC.IJPC_200_17.
6
Parent's Perspectives on How They Cope With the Impact on Their Family of a Child With Heart Disease.父母对自身如何应对患有心脏病的孩子给家庭带来的影响的看法。
J Pediatr Nurs. 2018 May-Jun;40:e9-e17. doi: 10.1016/j.pedn.2018.01.020. Epub 2018 Feb 1.
7
Acyanotic and Cyanotic Congenital Heart Diseases.非发绀型和发绀型先天性心脏病。
Indian J Pediatr. 2018 Jun;85(6):454-460. doi: 10.1007/s12098-017-2454-6. Epub 2017 Sep 30.
8
Instrument to assess educational programs for parents of children with congenital heart disease undergoing cardiac surgery.评估接受心脏手术的先天性心脏病患儿家长教育项目的工具。
Arch Argent Pediatr. 2017 Oct 1;115(5):439-445. doi: 10.5546/aap.2017.eng.439.
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Parenting a child at home with hypoplastic left heart syndrome: experiences of commitment, of stress, and of love.在家照顾患有左心发育不全综合征的孩子:关于责任、压力和爱的经历。
Cardiol Young. 2017 Sep;27(7):1341-1348. doi: 10.1017/S1047951117000270. Epub 2017 Jun 6.
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