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首页> 外文期刊>Journal of pediatric nursing >Struggling in the Dark to Help My Child: Parents' Experience in Caring for a Young Child with Juvenile Idiopathic Arthritis
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Struggling in the Dark to Help My Child: Parents' Experience in Caring for a Young Child with Juvenile Idiopathic Arthritis

机译：在黑暗中挣扎，帮助我的孩子：父母在关心一个幼儿有幼儿特发性关节炎的体验

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Abstract Purpose The purpose of this study is to describe parents' experiences in caring for 2–5-year-old children with juvenile idiopathic arthritis (JIA). Design and methods A qualitative study using single-occasion in-depth interviews was conducted. Nine parents (eight mothers and one father) were interviewed in-person or via telephone. Data were analyzed using inductive content analysis. Methods used to protect the trustworthiness of study results included maintenance of an audit trail, peer debriefing, and member checks. Results The core construct Struggling in the Dark to Help My Child explained parents' experience in six domains: not knowing, trying to reach out in the dark, feeling my child's pain, working out the kinks to stay on top to manage, feeling drained by the whole process, and being hard on the entire household. Parents struggled with the unknown, searched for resources, witnessed their child's suffering without knowing how to help, and tried every possible way to stay on top of the child's illness and treatment, even when they felt drained physically and emotionally. JIA not only consumed their lives, but also affected the entire family, including the siblings and spouse, and the relationships among family members. Conclusion and implications Findings highlight the day-to-day lived challenges parents face when caring for a young child with JIA. Healthcare providers including nurses need to assess the particular needs of an ill child and parents as well as the impact of the illness on the physical and psychosocial health of the entire family so that proper resources can be provided. Highlights ? The core construct Struggling in the Dark to Help My Child explained parents’ experience in caring for a young child with JIA. ? Parents struggled with the care and tried every possible way to stay on top of the child’s illness and treatment. ? The prolonged struggle substantially impacted the emotional and physical health of the parents and the entire household.
机译：摘要目的本研究的目的是描述父母对2-5岁儿童的父母在少年特发性关节炎（jia）中的经验。设计和方法采用单次深入访谈进行定性研究。九个父母（八个母亲和一个父亲）接受了人或通过电话采访过。使用归纳内容分析分析数据。用于保护研究结果可信度的方法包括维护审计跟踪，同行汇报和会员检查。结果核心构建在黑暗中努力帮助我的孩子在六个域中解释父母的经验：不知道，试图在黑暗中伸手，感受孩子的痛苦，锻炼扭结的扭结，留下来管理，感觉耗尽了整个过程，并在整个家庭上努力。父母与未知的未知，寻找资源，目睹了他们孩子的痛苦，而不知道如何帮助，并尽一切可能的方式留在孩子的疾病和治疗中，即使他们感到身体和情感地排水。贾不仅消耗了自己的生命，还影响了整个家庭，包括兄弟姐妹和配偶，以及家庭成员之间的关系。结论和含义调查结果突出了日常生活的挑战，父母在照顾贾爵孩子时面临着父母。包括护士的医疗保健提供者需要评估生病儿童和父母的特殊需求以及疾病对整个家庭的身体和心理社会健康的影响，以便可以提供适当的资源。强调 ？在黑暗中努力帮助我的孩子解释父母在照顾贾的父母的经验。还父母在护理中挣扎，并尽一切可能的方式留在孩子的疾病和治疗之上。还长期的斗争基本上影响了父母和整个家庭的情绪和身体健康。

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