探索印度尼西亚重型地中海贫血症患儿母亲的经历:描述性现象学研究。

IF 1.1 Q3 NURSING
Belitung Nursing Journal Pub Date : 2024-10-14 eCollection Date: 2024-01-01 DOI:10.33546/bnj.3142
Nelly Hermala Dewi, Setyowati, Enie Novieastari, Rr Tutik Sri Hariyati, Allenidekania
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引用次数: 0

摘要

背景:地中海贫血症是一种遗传性血液疾病,给患儿及其家庭带来了巨大的挑战。照顾者,尤其是母亲,在处理孩子的病情时经常会遇到困难。了解她们目前的经历对于改善护理和支持至关重要:本研究旨在探讨印度尼西亚万丹省母亲照顾地中海贫血患儿的经验:采用定性描述的方法,对 11 位确诊地中海贫血患儿的母亲进行了半结构化深入访谈。数据收集时间为 2023 年 4 月至 5 月。对访谈进行了录音,并采用科莱兹方法对数据进行逐字分析,以确定与经验相关的关键主题:形成了三个主题1) 将地中海贫血视为遗传病;2) 情感、后勤和实际护理挑战;3) 母亲在照顾地中海贫血患儿时获得的支持:研究结果凸显了地中海贫血患儿的母亲所面临的多方面挑战,并强调了护士和医疗服务提供者加强沟通、情感支持和护理协调的必要性。未来的研究应侧重于扩大支持系统和探索有效的干预措施,以提高家庭在应对复杂的慢性疾病时的生活质量。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Exploring experiences of mothers of children with thalassemia major in Indonesia: A descriptive phenomenological study.

Background: Thalassemia is a hereditary blood disorder that poses significant challenges for affected children and their families. Caregivers, particularly mothers, often experience difficulties in managing their child's condition. Understanding their current experience is crucial for improving care and support.

Objective: This study aimed to explore the experiences of mothers caring for children with thalassemia in Banten, Indonesia.

Methods: A qualitative descriptive approach was employed, involving semi-structured in-depth interviews with eleven mothers of children diagnosed with thalassemia. Data were collected from April to May 2023. The interviews were audio recorded, and the data were analyzed verbatim using Colaizzi's method to identify key themes related to the experiences.

Results: Three themes were developed: 1) Perception of thalassemia as a genetic condition, 2) Emotional, logistical, and practical caregiving challenges, and 3) Support received by mothers in caring for children with thalassemia.

Conclusion: The findings highlight the multifaceted challenges faced by mothers of children with thalassemia and emphasize the need for improved communication, emotional support, and care coordination from nurses and healthcare providers. Future research should focus on expanding support systems and exploring effective interventions to enhance the quality of life for families navigating the complexities of chronic illness.

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来源期刊
CiteScore
1.90
自引率
42.90%
发文量
0
审稿时长
12 weeks
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