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患有痴呆症和轻度认知障碍的人会遭受污名化吗?意大利、波兰和英国之间的跨文化调查。

Do people with dementia and mild cognitive impairments experience stigma? A cross-cultural investigation between Italy, Poland and the UK.

作者信息

Lion Katarzyna Małgorzata, Szcześniak Dorota, Bulińska Katarzyna, Evans Shirley Barbara, Evans Simon C, Saibene Francesca Lea, d'Arma Alessia, Farina Elisabetta, Brooker Dawn June, Chattat Rabih, Meiland Franka J M, Dröes Rose-Marie, Rymaszewska Joanna

机构信息

Department of Psychiatry, Wroclaw Medical University, Wroclaw, Poland.

Department of Rehabilitation in Internal Diseases, Wroclaw University School of Physical Education, Wroclaw, Poland.

出版信息

Aging Ment Health. 2020 Jun;24(6):947-955. doi: 10.1080/13607863.2019.1577799. Epub 2019 Feb 21.

Abstract

Until now little research has been done to answer the question of whether people with dementia experience stigma. No previous studies investigated possible differences between countries and cultures. Therefore, the aims of this study were to compare the experience of stigma (with social isolation, social rejection and internalised shame as components) among people with dementia and mild cognitive impairment (MCI) ( = 180) in Italy ( = 79), Poland ( = 47) and the United Kingdom (UK) ( = 54); and to investigate possible relationships with demographical and clinical outcomes. A one group multinational cross-sectional design was used. Stigma was measured with the Stigma Impact Scale (SIS), quality of life aspects with Dementia Quality of Life scale (DQOL) and Quality of Life Alzheimer's Disease scale (QOL-AD), social support with Duke Social Support Index (DSSI), cognitive functioning with Global Deterioration Scale (GDS). The level of stigmatisation (SIS) among study participants varied from 2 to 65 (median = 33.5; Q = 27; Q = 41). People with dementia in the UK experienced a higher level of stigmatisation than people in Italy and Poland. The experienced stigmatisation negatively correlated with social support (DSSI; rho = -0.42,  = 0.000) and quality of life (QOL-AD; rho = -0.39,  = 0.000). People who experienced a higher level of stigmatisation scored higher in negative mood DQOL subscale (rho = 0.28,  = 0.0002). There is a strong need for research into the individual experience of people with dementia across the world. This could help in providing support and care services that match their experience, needs, preferences; and in designing well informed awareness campaigns based on their voice.

摘要

到目前为止,针对痴呆症患者是否遭受污名化这一问题的研究甚少。此前没有研究调查过不同国家和文化之间可能存在的差异。因此,本研究的目的是比较意大利(n = 79)、波兰(n = 47)和英国(n = 54)痴呆症患者和轻度认知障碍(MCI)患者(n = 180)的污名化经历(包括社会隔离、社会排斥和内化羞耻感等方面);并研究其与人口统计学和临床结果之间可能存在的关系。采用单组跨国横断面设计。使用污名影响量表(SIS)测量污名化程度,使用痴呆症生活质量量表(DQOL)和阿尔茨海默病生活质量量表(QOL - AD)测量生活质量方面,使用杜克社会支持指数(DSSI)测量社会支持,使用总体衰退量表(GDS)测量认知功能。研究参与者的污名化程度(SIS)在2至65之间(中位数 = 33.5;四分位数间距Q1 = 27;Q3 = 41)。英国的痴呆症患者比意大利和波兰的患者遭受更高程度的污名化。经历的污名化与社会支持(DSSI;rho = -0.42,p = 0.000)和生活质量(QOL - AD;rho = -0.39,p = 0.000)呈负相关。经历更高程度污名化的人在DQOL负性情绪子量表上得分更高(rho = 0.28,p = 0.0002)。非常有必要对全球痴呆症患者的个体经历进行研究。这有助于提供与其经历、需求、偏好相匹配的支持和护理服务;并根据他们的声音设计出信息充分的宣传活动。

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