精神分裂症病患與家庭成員面臨疾病遺傳不確定情境之生活經驗探討

The Exploration of the Lived Experiences of Schizophrenic Patients and Family Members Facing the Fear of Illness Hereditary

背景：精神分裂症帶給患者與家人多方負面之影響，疾病無法治癒存留遺傳的可能性將對他們生活產生何樣的影響？從相關研究得知精神分裂病者其生活經驗中，疾病不確定感的確存在，至於遺傳方面不確定感的生活經驗探討，目前於國內仍鮮少被論及。
目的：了解精神分裂病者與家人面臨疾病遺傳不確定情境之生活感受經驗為何？
方法：以現象學研究法，選取新竹縣兩所醫院的病房與門診之精神分裂病者本人及家人各6名為本研究之樣本。
結果：經由資料分析歸納出三大主題「一、承受精神病折騰之苦與遺傳不確定的糾葛—感嘆婚姻夢難圓；二、由疑憂至相信—面對遺傳處境，心中漸有的選擇與決策；三、歷經過渡、重新體驗而面對遺傳病—堅韌守護住一個家。」
結論／實務應用：研究發現病者與家人皆對遺傳的不確定性感到擔心、害怕，有些顯現出焦慮或無望等不同情緒反應。期望研究結果有助護理人員了解，精神病家面臨疾病遺傳不確定情境所遭逢的多重影響與衝擊，以便能依據不同家庭的處境與獨特性，提供適切的諮詢和更佳的照護品質。

Background: 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.
Purpose: This research was designed to gather important data on schizophrenic patients and their family members related to their uncertainties about disease heredity.
Methods: 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.
Results: 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.