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韧性与挑战:约旦脑瘫患儿母亲经验的定性研究。

Resilience and challenges: A qualitative exploration of Jordanian Mothers' experiences with children who have cerebral palsy.

机构信息

Maternal & Child Health Nursing Department/ Faculty of Nursing, Jordan University of Science and Technology, P.O.Box (3030), Irbid 22110, Jordan.

Jordan University of Science and Technology, Irbid, Jordan.

出版信息

J Pediatr Nurs. 2024 Sep-Oct;78:e314-e322. doi: 10.1016/j.pedn.2024.07.020. Epub 2024 Jul 25.

Abstract

PURPOSE

This study aimed to explore the experiences of Jordanian mothers of children with cerebral palsy (CP) in order to better understand the challenges they face while caring for their children.

DESIGN AND METHODS

A qualitative descriptive study was applied, using semi-structured face to face interviews with a purposive sample of 10 mothers of children with CP.

FINDINGS

Mothers caring for children with CP embark on a challenging journey. Navigating the diagnosis begins with shock and disbelief, followed by emotional struggles as they deal with the new reality. This initial phase also involves caregiving challenges and hardships. Mothers may experience societal stigma and feelings of rejection, which can contribute to social isolation. Additionally, the physical demands of care can lead to financial hardships. These financial constraints can further limit access to specialized care, creating a frustrating cycle for mothers. Throughout this process, mothers demonstrate resilience by adapting to the illness. This encompasses making changes in their lives, actively seeking support, and developing expertise in managing their child's specific needs.

CONCLUSIONS

The results shed light on the emotional, physical, and social challenges faced by mothers of children with CP. The findings show a narrative of adaptation, resilience, and strength, encompassing adjustments to the diagnosis, substantial life changes, seeking support, and addressing challenges such as social stigma, isolation, and various hardships.

PRACTICE IMPLICATIONS

Our findings lay the foundation for tailored interventions and empathic support for mothers caring for a child with CP.

摘要

目的

本研究旨在探讨约旦脑瘫儿童母亲的经验,以便更好地了解她们在照顾孩子时所面临的挑战。

设计与方法

采用定性描述性研究方法,对 10 名脑瘫儿童的母亲进行了有针对性的半结构式面对面访谈。

发现

脑瘫儿童的母亲踏上了充满挑战的旅程。从震惊和难以置信开始,对新现实的情绪挣扎,接着是护理挑战和困难。母亲可能会经历社会耻辱感和被拒绝的感觉,这可能导致社会孤立。此外,照顾的身体需求可能导致经济困难。这些经济限制可能进一步限制获得专业护理的机会,使母亲陷入令人沮丧的循环。在这个过程中,母亲通过适应疾病表现出韧性。这包括改变生活,积极寻求支持,并发展管理孩子特殊需求的专业知识。

结论

研究结果揭示了脑瘫儿童母亲所面临的情感、身体和社会挑战。研究结果表明,她们适应、坚韧和坚强的叙述,包括适应诊断、重大生活变化、寻求支持以及应对社会耻辱、孤立和各种困难等挑战。

实践意义

我们的研究结果为脑瘫儿童母亲提供了有针对性的干预和同理心支持的基础。

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