当前位置: X-MOL 学术Mol. Genet. Metab. Rep. › 论文详情
Our official English website, www.x-mol.net, welcomes your feedback! (Note: you will need to create a separate account there.)
Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism
Molecular Genetics and Metabolism Reports ( IF 1.8 ) Pub Date : 2020-10-05 , DOI: 10.1016/j.ymgmr.2020.100654
Prashanth Rajasekar , Srinitya Gannavarapu , Melanie Napier , Asuri N. Prasad , Akshya Vasudev , Andrew Mantulak , Beth K. Potter , Chitra Prasad

Parents of children with inborn errors of metabolism (IEM) face numerous psychosocial challenges. An increased understanding and awareness of these stressors can ensure better overall outcomes for the entire family. We conducted semi-structured, in-person interviews with ten parents to identify psychosocial stressors, strategies, and supports they utilized to overcome their challenges. Our interview guide was designed to elicit familial experiences during the pre- and post-diagnosis periods. The themes and sub-themes were identified through qualitative descriptive textual analysis of audio-recorded transcripts. Major themes identified include ambiguity of illness, changing family and spousal dynamics, and navigating the healthcare system. Sub-themes revolved around disease effects, psychological stressors, health systems, support, and facing the disease. Healthcare professionals have an opportunity to minimize the impact of negative emotional outcomes by assisting families as they navigate the experience of having a child with an IEM. Our findings can be used to develop and continue a more well-rounded, family-oriented framework for IEM management.



中文翻译:

父母心理社会方面和应激因素与先天性代谢错误的处理有关

先天性新陈代谢错误(IEM)儿童的父母面临着众多的社会心理挑战。对这些压力源的更多了解和认识可以确保整个家庭获得更好的总体结果。我们与十名父母进行了半结构化的面对面访谈,以确定社会心理压力源,策略和支持,以帮助他们克服挑战。我们的采访指南旨在在诊断之前和之后引起家庭经验。通过对录音笔录进行定性描述性文本分析,确定了主题和子主题。确定的主要主题包括疾病的模棱两可,家庭和配偶关系的变化以及医疗保健系统的导航。子主题围绕疾病影响,心理压力,卫生系统,支持,面对疾病。医护专业人员有机会通过协助家庭在IEM中生孩子的过程中提供帮助,从而最大程度地减少负面情绪结果的影响。我们的发现可用于为IEM管理开发和继续更全面,面向家庭的框架。

更新日期:2020-10-05
down
wechat
bug