沙特阿拉伯先天性异常患儿母亲的挑战：经验的定性探索。
Challenges of having a child with congenital anomalies in Saudi Arabia: a qualitative exploration of mothers' experience.
机构信息
Department of Basic Medical Sciences, Unaizah College of Medicine and Medical Sciences, Qassim University, Unaizah, Saudi Arabia.
College of Nursing, King Saud University, Riyadh, Saudi Arabia.
出版信息
Front Public Health. 2023 Apr 24;11:1111171. doi: 10.3389/fpubh.2023.1111171. eCollection 2023.
BACKGROUND
Congenital anomalies in children lead to morbidity, mortality, or lifelong disabilities. Mothers of children with congenital anomalies face considerable obstacles in parenting their children because of their lack of knowledge about such health conditions, lack of family support, and lack of health, rehabilitation, and social care support. In Saudi Arabia, less attention are given to researching this important issue. In this context, the purpose of the study was to explore mothers' experiences and perceptions toward children with congenital anomalies.
METHODS
We employed a qualitative phenomenological study design. We purposively recruited 10 mothers of children with congenital anomalies from different cities in Saudi Arabia. We interviewed the mothers with an in-depth interview guideline. The interview questions were designed to explore their perception of congenital anomalies in children and their experience of parenting and seeking health, rehabilitation, education, and social care services for children with such anomalies.
RESULT
Analysis of our data suggest that mothers of children with congenital anomalies face considerable challenges because of a lack of medical, rehabilitation, and social care support, lack of knowledge about these conditions and their management, lack of responsiveness of the healthcare providers, lack of support from the family and the stigma associated with such conditions. Consequently, mothers experience poor mental and social well-being.
CONCLUSION
Mothers are facing considerable challenges in raising children with congenital anomalies. Regular screening for early detection of congenital anomalies, counseling support for mothers, and improving healthcare providers' responsiveness, knowledge, and skills are necessary. In addition, appropriate awareness-raising programs need to be implemented at the community level to counteract the stigma and negative attitudes of the community toward children with congenital anomalies and their families.
背景
儿童先天性畸形会导致发病、死亡或终生残疾。由于缺乏对这些健康状况的了解、缺乏家庭支持以及缺乏健康、康复和社会关怀支持，患有先天性畸形儿童的母亲在养育子女方面面临着相当大的障碍。在沙特阿拉伯，对这一重要问题的研究关注较少。在这种情况下，本研究的目的是探讨母亲对患有先天性畸形儿童的经历和看法。
方法
我们采用了定性现象学研究设计。我们有意从沙特阿拉伯不同城市招募了 10 名患有先天性畸形儿童的母亲。我们使用深入访谈指南对母亲进行访谈。访谈问题旨在探讨她们对儿童先天性畸形的看法，以及她们在养育和为患有此类畸形的儿童寻求健康、康复、教育和社会关怀服务方面的经验。
结果
我们对数据的分析表明，由于缺乏医疗、康复和社会关怀支持，缺乏对这些疾病及其管理的了解，医疗服务提供者反应迟钝，缺乏家庭支持以及与这些疾病相关的耻辱感，患有先天性畸形儿童的母亲面临着相当大的挑战。因此，母亲的心理健康和社会幸福感较差。
结论
母亲在养育患有先天性畸形儿童方面面临着相当大的挑战。有必要进行常规筛查以早期发现先天性畸形，为母亲提供咨询支持，并提高医疗服务提供者的反应能力、知识和技能。此外，需要在社区层面实施适当的宣传方案，以消除社区对患有先天性畸形的儿童及其家庭的耻辱感和负面态度。
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