Stigma/culture/genetics of schizophrenia--Family perspec

精神分裂症的耻辱/文化/遗传学——家庭视角

• 批准号: 6559331
• 负责人: BARBARA BOWLES BIESECKER
• 金额: --
• 依托单位: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/6559331
• 关键词: behavioral /social science research tag; behavioral genetics; belief; clinical research; culture; decision making; family genetics; gene expression; genetic screening; genetic susceptibility; human genetic material tag; human subject; interview; linkage mapping; perception; psychosocial separation; schizophrenia; siblings

This study sought to understand the percieved stigma that may be associated with the genetics of schizophrenia and was exploratory in nature. Sixteen parents of individuals with schizophrenia and 10 siblings were interviewed to determine: 1) tbe individuals' context of illness; 2) their interest in and understnading of genetic research related to schizophrenia; 3) their decision-making in choosing to participte in a linkage study; 4) their perception of stigma associated with schizophrenia; 5) if/how the identification of a gene associated with schizophrenia may alter the stigma associated with this illness; 6) how schizophrenia is similar to or different from other genetic diseases; 7) if/how their identity with a particular culture shapes their beliefs about stigma and genetic research. The interviews were audiotaped and transcribed and coded for themes. Data analysis suggests that most participants view genetic predisposition to schizophrenia as less stigmatizing. They perceive the confirmation of a biological cause as freeing from outdated notions of poor parenting or dysfunctional families. While participants demonstrate cognitive recognition of the distant nature of improved treatments or prevention, they remain hopeful about the promise of genetic research. This suggests the importance for careful discussion of research implications at the time of participation. These results successfully contributed to the completion of a master's of science degree from the Johns Hopkins School of Public Health and have been drafted for scientific publication.

本研究旨在了解可能与精神分裂症遗传学相关的感知耻辱，并且本质上是探索性的。对16名精神分裂症患者的父母和10名兄弟姐妹进行了访谈，以确定：1)个体的疾病背景；2)对精神分裂症相关基因研究的兴趣和理解；3)选择参与联动研究的决策；4)与精神分裂症相关的耻辱感；5)鉴定与精神分裂症相关的基因是否/如何可能改变与这种疾病相关的耻辱感；6)精神分裂症与其他遗传性疾病的相似或不同之处；7)他们对特定文化的认同是否/如何影响他们对耻辱和基因研究的看法。这些采访被录音、转录并根据主题进行编码。数据分析表明，大多数参与者认为精神分裂症的遗传易感性不那么可耻。他们认为，确认了生理原因，就意味着摆脱了关于不良教养或不正常家庭的过时观念。虽然参与者表现出对改进治疗或预防的遥远本质的认知认识，但他们仍然对基因研究的前景充满希望。这表明在参与时仔细讨论研究含义的重要性。这些结果成功地帮助完成了约翰霍普金斯大学公共卫生学院的科学硕士学位，并已起草供科学出版物使用。