Lu Shiue-Fen, Hong Chen-Jee, Wang Wen-Sheng, Sheu Shuh-Jen
School of Nursing, National Yang-Ming University, ROC.
Hu Li Za Zhi. 2010 Feb;57(1):55-63.
Schizophrenia negatively affects both patients and their families. What are the effects of this incurable, potentially hereditary disease on daily life? Related research shows that schizophrenics tend to experience 'uncertainty' in daily life. Discussions on 'uncertainty' experienced in daily life in the context of concerns regarding hereditary illness remain scarce in Taiwan.
This research was designed to gather important data on schizophrenic patients and their family members related to their uncertainties about disease heredity.
Participants were recruited from the psychiatric unit and outpatient services department at two hospitals in Hsinchu County. Research subjects included a total of six schizophrenics and six family members.
The three topics deduced from data analysis included: 1. marriage / family difficulties rooted in feelings of suffering and torture related to the psychosis and uncertainties regarding disease heredity; 2. evolution from doubt to trust as patients gradual accept choices and make decisions related to disease heredity; and 3. dealing with disease heredity again after having made a successful transition (i.e. persistence to maintain family ties).
CONCLUSIONS / IMPLICATIONS FOR PRACTICE: Both patients and family members experienced worry and fear due to uncertainty about the hereditary condition of the disease. Some experienced emotional responses such as anxiety and helplessness. Research results are expected to help nursing personnel understand the multiple effects and impacts of uncertainty toward illness heredity experienced by the patients and their families in order to provide better consultation and medical care quality under differing circumstances depending on the individual characteristics of patients and their families.
精神分裂症对患者及其家庭都会产生负面影响。这种无法治愈且可能具有遗传性的疾病对日常生活有哪些影响?相关研究表明,精神分裂症患者在日常生活中往往会经历“不确定性”。在台湾,针对遗传性疾病相关的日常生活中所经历的“不确定性”的讨论仍然很少。
本研究旨在收集与精神分裂症患者及其家庭成员对疾病遗传不确定性相关的重要数据。
参与者从新竹县两家医院的精神科病房和门诊服务部门招募。研究对象包括总共六名精神分裂症患者和六名家庭成员。
数据分析得出的三个主题包括:1. 因精神病相关的痛苦和折磨感以及疾病遗传的不确定性而产生的婚姻/家庭困难;2. 随着患者逐渐接受与疾病遗传相关的选择并做出决定,从怀疑到信任的转变;3. 在成功过渡后再次应对疾病遗传(即坚持维持家庭关系)。
结论/对实践的启示:由于对疾病遗传状况的不确定性,患者和家庭成员都经历了担忧和恐惧。一些人经历了焦虑和无助等情绪反应。研究结果有望帮助护理人员了解患者及其家庭对疾病遗传不确定性所经历的多种影响,以便根据患者及其家庭的个体特征,在不同情况下提供更好的咨询和医疗护理质量。