Wong Yin-Ling Irene, Kong Dexia, Tu Lufei, Frasso Rosemary
1School of Social Policy & Practice, University of Pennsylvania, 3701 Locust Walk, Philadelphia, PA 19104-6214 USA.
2College of Population Health, Thomas Jefferson University, 901 Walnut Street, 10th Floor, Philadelphia, PA 19107 USA.
Int J Ment Health Syst. 2018 Apr 3;12:14. doi: 10.1186/s13033-018-0192-4. eCollection 2018.
It is estimated that 8 million of the Chinese adult population had a diagnosis of schizophrenia. Stigma associated with mental illness, which is pervasive in the Chinese cultural context, impacts both persons with schizophrenia and their family caregivers. However, a review of the literature found a dearth of research that explored internalized stigma from the perspectives of both patients and their caregivers.
We integrated data from standardized scales and narratives from semi-structured interviews obtained from eight family-dyads. Interview narratives about stigma were analyzed using directed content analysis and compared with responses from Chinese versions of the Internalized Stigma of Mental Illness Scale and Affiliated Stigma Scale. Scores from the two scales and number of text fragments were compared to identify consistency of responses using the two methods. Profiles from three family-dyads were analyzed to highlight the interactive aspect of stigma in a dyadic relationship.
Our analyses suggested that persons with schizophrenia and their caregivers both internalized negative valuation from their social networks and reduced engagement in the community. Participants with schizophrenia expressed a sense of shame and inferiority, spoke about being a burden to their family, and expressed self-disappointment as a result of having a psychiatric diagnosis. Caregivers expressed high level of emotional distress because of mental illness in the family. Family dyads varied in the extent that internalized stigma were experienced by patients and caregivers.
Family plays a central role in caring for persons with mental illness in China. Given the increasingly community-based nature of mental health services delivery, understanding internalized stigma as a family unit is important to guide the development of cultural-informed treatments. This pilot study provides a method that can be used to collect data that take into consideration the cultural nuances of Chinese societies.
据估计，中国有800万成年人口被诊断为精神分裂症。在中华文化背景中普遍存在的与精神疾病相关的污名，对精神分裂症患者及其家庭照顾者都会产生影响。然而，一项文献综述发现，从患者及其照顾者的角度探讨内化污名的研究匮乏。
我们整合了来自八个家庭二元组的标准化量表数据和半结构化访谈的叙述。使用定向内容分析法分析关于污名的访谈叙述，并与中文版精神疾病内化污名量表和附属污名量表的回答进行比较。比较两个量表的得分和文本片段数量，以确定两种方法回答的一致性。分析三个家庭二元组的概况，以突出二元关系中污名的互动方面。
我们的分析表明，精神分裂症患者及其照顾者都从其社交网络中内化了负面评价，并减少了在社区中的参与度。精神分裂症患者表达了羞耻和自卑的感觉，谈到自己是家庭的负担，并因患有精神疾病诊断而表达了自我失望。照顾者因家庭中的精神疾病而表达了高度的情绪困扰。患者和照顾者经历内化污名的程度在家庭二元组中各不相同。
在中国，家庭在照顾精神疾病患者方面发挥着核心作用。鉴于精神卫生服务提供日益以社区为基础，将内化污名作为一个家庭单位来理解对于指导文化适应性治疗的发展很重要。这项试点研究提供了一种可用于收集考虑中国社会文化细微差别的数据的方法。
