Person-centered care (PCC) is recognized as a key component of the delivery of quality healthcare and a model for healthcare systems worldwide. The experience of illness through a person's perspective is one domain defining PCC contributing to a growing interest in examining the lived experiences of illness. This scoping review sought to examine what is known from the existing literature about the lived experiences of persons gene-positive for or living with Huntington's disease (HD) as described in their own voices and to outline prominent psychosocial themes of those experiences. Five databases were systematically searched and analyzed resulting in 19 publications for inclusion. Using a thematic analysis, five prominent psychosocial themes were identified: grappling with control, avoidance as an escape from realities, adaptation to new realities, managing emotions, and appreciation for life. Variation in themes existed across HD life stage of being undiagnosed or diagnosed with HD. The findings of this review demonstrate that individuals who are gene-positive for or living with HD require support well beyond the disclosure of genetic testing and that it may be beneficial for healthcare providers to consider where along the life stage trajectory a person affected by HD may be to ensure the delivery of quality PCC.

中文翻译：

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“我必须开始学习如何忍受生病”：亨廷顿病患者生活经历的范围审查

以人为本的护理 (PCC) 被认为是提供优质医疗保健的关键组成部分，也是全球医疗保健系统的典范。从一个人的角度来看疾病的经历是定义 PCC 的一个领域，这有助于人们对检查疾病的生活经历越来越感兴趣。该范围审查旨在检查现有文献中已知的关于基因阳性或患有亨廷顿病 (HD) 的人的生活经历，如他们自己的声音所描述的，并概述这些经历的突出社会心理主题。对五个数据库进行了系统搜索和分析，最终纳入了 19 篇出版物。使用主题分析，确定了五个突出的社会心理主题：与控制作斗争，逃避现实，适应新的现实，管理情绪，欣赏生活。在未诊断或诊断为 HD 的 HD 生命阶段中，主题存在差异。本综述的结果表明，基因阳性或患有 HD 的个体需要的支持远远超出基因检测的披露范围，并且医疗保健提供者考虑 HD 影响的人在生命阶段轨迹的哪个位置可能是有益的以确保交付优质的PCC。