沉默中的力量:母亲抚养脑积水患儿的历程。

IF 1.3 4区 医学 Q4 CLINICAL NEUROLOGY Child's Nervous System Pub Date : 2024-11-01 Epub Date: 2024-07-09 DOI:10.1007/s00381-024-06530-5
Eesha Yaqoob, Asma Ahmed, Beenish Qazi, Dua Abbas Zaidi, Shahzad Ali Khan, Bipin Chaurasia, Saad Javed
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引用次数: 0

摘要

背景:养育脑积水患儿非常具有挑战性,尤其是在中低收入国家。在巴基斯坦,母亲作为脑积水患儿的主要照顾者承受着巨大的压力:本研究探讨了巴基斯坦母亲在抚养脑积水患儿时所面临的挑战,研究采用了定性方法,通过焦点小组讨论的形式,由巴基斯坦三级医院的十位脑积水患儿母亲参加:研究结果突出了三大主题:情感伤害、社会隔离和经济压力。由于社会偏见和缺乏支持,尤其是来自丈夫和家人的支持,母亲们承受着巨大的精神压力。社会隔离是普遍现象,因为母亲们害怕分担自己的负担,并因子女的需要而面临身体上的束缚。经济压力是另一个主要问题,高昂的医疗费用加重了她们的经济困难:本研究强调改善获得专业护理的途径、开展宣传活动以减少耻辱感、提供经济援助以及加强社区支持网络,从而为这些母亲提供更好的支持。满足这些未得到满足的需求对于增强巴基斯坦母亲的护理能力、改善脑积水患儿的生活质量至关重要。
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Strength in silence: the journey of mothers raising children with hydrocephalus.

Background: Raising a child with hydrocephalus can be very challenging, especially in low- and middle-income countries. In Pakistan, mothers being the primary caregivers for their hydrocephalic children are under tremendous stress.

Methods: This study explores the challenges faced by Pakistani mothers raising children with hydrocephalus, employing a qualitative methodology through focus group discussions comprising ten mothers of hydrocephalic babies at Tertiary Care Hospital in Pakistan.

Results: The findings highlight three main themes: emotional toll, social isolation, and financial strain. Mothers experience significant emotional stress due to societal stigma and a lack of support, particularly from their husbands and family. Social isolation is prevalent, as mothers fear sharing their burdens and face physical confinement due to their children's needs. Financial strain is another major issue, with high medical costs adding to their economic difficulties.

Conclusion: The study emphasizes improved access to specialized care, awareness campaigns to reduce stigma, financial assistance, and stronger community support networks to support these mothers better. Addressing these unmet needs is crucial for empowering Pakistani mothers in their caregiving roles and improving the quality of life for their children with hydrocephalus.

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来源期刊
Child's Nervous System
Child's Nervous System 医学-临床神经学
CiteScore
3.00
自引率
7.10%
发文量
322
审稿时长
3 months
期刊介绍: The journal has been expanded to encompass all aspects of pediatric neurosciences concerning the developmental and acquired abnormalities of the nervous system and its coverings, functional disorders, epilepsy, spasticity, basic and clinical neuro-oncology, rehabilitation and trauma. Global pediatric neurosurgery is an additional field of interest that will be considered for publication in the journal.
期刊最新文献
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