Journaling for Parents and Adults With Myhre Syndrome: Using Reflective Writing to Help Cope.

IF 4.4 3区 医学 Q2 GENETICS & HEREDITY
Rachel Gottlieb, Ashley W Wong, Allison L Cirino, Eleanor R Scimone, Angela E Lin
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引用次数: 0

Abstract

Myhre syndrome is a rare progressive genetic disorder characterized by hearing loss, cardiovascular and joint problems, neoplasia, and neuropsychologic disabilities. Parents of children with Myhre syndrome and adults themselves face unique challenges, stresses, and fears associated with this diagnosis. Reflective writing in the form of journaling can provide psychosocial support and help individuals cope with this diagnosis. Adult patients and parents whose children were evaluated at the Massachusetts General Hospital Myhre Syndrome Clinic were invited to participate in a three-month journaling intervention. Participation in the study required the completion of a series of surveys prior to starting and upon completion of the study. Data from these surveys were analyzed to assess for change in mental well-being. Eleven individuals participated, six of whom completed the three-month journaling intervention and post-journaling surveys. Three participants indicated that journaling had an impact on their mental well-being, and of these, two planned to continue journaling. However, there was no statistically significant difference in mental well-being scores pre- and post-journaling intervention. The very small size of the study limits interpretation, but we think it is reasonable to suggest that expressive writing through journaling may be a coping mechanism and means of improving well-being for some individuals in the Myhre syndrome community.

为患有迈尔综合征的父母和成年人写日记:使用反思性写作来帮助应对。
Myhre综合征是一种罕见的进行性遗传疾病,以听力丧失、心血管和关节问题、肿瘤和神经心理障碍为特征。患有Myhre综合征的儿童的父母和成年人自己都面临着与这种诊断相关的独特挑战、压力和恐惧。日记形式的反思性写作可以提供社会心理支持,帮助个人应对这种诊断。在马萨诸塞州总医院Myhre综合征诊所接受评估的成年患者和孩子的父母被邀请参加为期三个月的日记干预。参与这项研究需要在研究开始前和研究结束后完成一系列调查。对这些调查的数据进行分析,以评估心理健康的变化。11个人参与其中,其中6人完成了为期3个月的日志干预和日志后调查。三名参与者表示,写日记对他们的心理健康有影响,其中两人计划继续写日记。然而,在日志干预前后,心理健康得分没有统计学上的显著差异。这项研究的规模很小,限制了解释,但我们认为,通过日记表达性写作可能是一种应对机制,也是改善Myhre综合征群体中一些个体幸福感的手段,这是合理的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
7.00
自引率
0.00%
发文量
42
审稿时长
>12 weeks
期刊介绍: Seminars in Medical Genetics, Part C of the American Journal of Medical Genetics (AJMG) , serves as both an educational resource and review forum, providing critical, in-depth retrospectives for students, practitioners, and associated professionals working in fields of human and medical genetics. Each issue is guest edited by a researcher in a featured area of genetics, offering a collection of thematic reviews from specialists around the world. Seminars in Medical Genetics publishes four times per year.
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