Stigma/culture/genetics of schizophrenia--Family perspec

本研究试图了解可能与精神分裂症遗传学相关的感知耻辱，并具有探索性。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）患者的疾病背景;（2）他们对精神分裂症相关遗传研究的兴趣和理解;（3）他们选择参加连锁研究的决策;（4）他们对精神分裂症相关污名的看法; 5）与精神分裂症相关的基因的鉴定是否/如何改变与这种疾病相关的耻辱; 6）精神分裂症与其他遗传疾病如何相似或不同; 7）他们对特定文化的认同是否/如何塑造他们对耻辱和遗传研究的信念。访谈录了音，并根据主题进行了转录和编码。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污名化。他们认为，确认生物原因是从过时的观念中解放出来的，这些观念认为父母养育不当或家庭功能失调。虽然参与者表现出对改进治疗或预防的遥远性的认知，但他们仍然对遗传研究的前景充满希望。这表明在参与时仔细讨论研究影响的重要性。这些结果成功地促成了约翰霍普金斯公共卫生学院科学硕士学位的完成，并已起草科学出版物。

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 They perceive the confirmation of a biological cause as freeing from outdated notions of poor parenting or dysfunctional families.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.