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Understanding domains that influence perceived stigma in individuals with Huntington disease.
Rehabilitation Psychology ( IF 1.9 ) Pub Date : 2020-05-01 , DOI: 10.1037/rep0000311
Nicholas R Boileau 1 , Jane S Paulsen 2 , Rebecca E Ready 3 , Elizabeth A Hahn 4 , Jin-Shei Lai 4 , Noelle E Carlozzi 1
Affiliation  

PURPOSE/OBJECTIVE Persons with Huntington's disease experience stigma because of their gene status. Whereas perceived stigma has been found to impact quality of life, it is unknown how different health domains (i.e., physical, emotional, cognitive, and social) are associated with feelings of stigma. In addition, stigma research has been limited by the use of cross-sectional analyses. The current study seeks to explore which domains are associated with stigma in a longitudinal assessment of persons with Huntington's disease. Research Method/Design: The current analysis used data from the HDQLIFE study, which included 479 participants at baseline, 315 participants at 12 months, and 277 participants at 24 months. A multilevel model (time nested within person) was used to examine the effect of physical, emotional, cognitive, and social health on perceived stigma (Neuro-QoL Stigma) while controlling for demographic factors. RESULTS Findings indicate that physical, emotional, and cognitive health were associated with perceived stigma, whereas social health and demographic factors were not. Within-subject, time-varying predictors accounted for 20.2% of the variance in stigma. CONCLUSIONS/IMPLICATIONS Our findings suggest that perceived stigma is influenced by physical, emotional, and cognitive health, which may be treated with physical therapy, emotional counseling, and cognitive rehabilitation. Application of these therapies may relieve the burden of perceived stigma; however, more research is needed in this area. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

中文翻译:

了解影响亨廷顿病患者耻辱感的领域。

目的/目标亨廷顿病患者因其基因状况而遭受耻辱。尽管已发现耻辱感会影响生活质量,但尚不清楚不同的健康领域(即身体、情感、认知和社交)如何与耻辱感相关。此外,污名研究还因横断面分析的使用而受到限制。目前的研究旨在探索哪些领域与亨廷顿病患者的纵向评估中的耻辱感相关。研究方法/设计:当前的分析使用了 HDQLIFE 研究的数据,其中包括 479 名基线参与者、315 名 12 个月参与者和 277 名 24 个月参与者。使用多层次模型(嵌套在人体内的时间)来检查身体、情感、认知和社会健康对感知耻辱(神经生活质量耻辱)的影响,同时控制人口因素。结果 研究结果表明,身体、情感和认知健康与耻辱感相关,而社会健康和人口因素则不然。在受试者内部,随时间变化的预测变量占耻辱方差的 20.2%。结论/意义我们的研究结果表明,耻辱感受到身体、情绪和认知健康的影响,可以通过物理治疗、情绪咨询和认知康复来治疗。这些疗法的应用可以减轻耻辱感的负担;然而,这一领域还需要更多的研究。(PsycINFO 数据库记录 (c) 2020 APA,保留所有权利)。
更新日期:2020-05-01
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