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首页> 外文期刊>Global Qualitative Nursing Research >Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency:
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Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency:

机译：养育中链酰基辅酶A脱氢酶缺乏症儿童的父母经验：

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Newborn screening enabling early diagnosis of medium chain acyl-CoA dehydrogenase deficiency (MCADD) has dramatically improved health outcomes in children with MCADD. Achieving those outcomes depends on effective management by parents. Understanding parental management strategies and associated anxieties and concerns is needed to inform provision of appropriate care and support. Semistructured interviews were conducted with a purposive sample of parents of children aged 2 to 12 years. Thematic analysis identified two main themes. Managing dietary intake examined how parents managed day-to-day dietary intake to ensure adequate intake and protection of safe fasting intervals. Managing and preventing illness events explored parental experiences of managing illness events and their approach to preventing these events. Management strategies were characterized by caution and vigilance and influenced by a lack of confidence in others to manage the condition. The study identifies the need for increased awareness of the condition, particularly in relation to emergency treatment.
机译：新生儿筛查能够早期诊断中链酰基辅酶A脱氢酶缺乏症（MCADD），大大改善了MCADD儿童的健康状况。实现这些结果取决于父母的有效管理。需要了解父母的管理策略以及相关的焦虑和忧虑，以提供适当的照护和支持。进行了半结构化访谈，目的是对2至12岁儿童的父母进行抽样调查。主题分析确定了两个主要主题。管理饮食摄入量检查了父母如何管理日常饮食摄入量，以确保足够的摄入量并保护安全的禁食间隔。管理和预防疾病事件探索了父母管理疾病事件的经验及其预防这些事件的方法。管理策略的特点是谨慎和保持警惕，并因缺乏对他人应对疾病的信心而受到影响。这项研究确定了需要增强对病情的认识，特别是在紧急治疗方面。

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