近年來因末期腎衰竭必須接受血液透析治療的患者日益增加,洗腎者在治療期間必須面臨來自身體機能的耗損,與隨之而來的生活適應的問題,其心理社會適應與生活品質是臨床工作者與研究者關注的焦點。本研究將以「心理社會典範」為依據,藉由病患的生命經驗發聲,尋求洗腎者整全療癒的關照可能,並析解患者在罹病後的生活適應歷程當中,因應資源的流失、保存與轉化。 本研究採立意取樣,以南部某區域教學醫院之腎末洗腎者為研究對象,以橫斷(cross-section)的方式,針對不同透析年限的洗腎者進行訪談,並在第一次訪問後半年進行第二次追蹤訪談,以瞭解在時間的推移之下,洗腎者呈現的生活適應狀態的變化。受訪對象10位,平均年齡45.1歲,平均洗腎年數為6年;其中男性2位、女性8位,教育程度都在高中以上,佔7位,職業以家管佔6位居多。在資料分析策略上以Denzin所提出之解釋性互動論為本研究的徑路,解構以往以醫療論述為主的疾病生活適應模式,透過參與觀察、深度訪談與追蹤訪談,捕捉以洗腎病患為主體的疾病生活適應的樣態,揭露該生病現象之下的心身情態,以重新建構病患的適應轉化歷程,並將之脈絡化到自然生活世界。 本研究以疾病的心理社會適應為時間軸,「適應初期」出現「臨現身體的衝擊」與「自我/他者的脈動」;「適應中、後期」則包含了「身體資源的流轉」與「新構自我的轉化」的動力概念,最後「治療生活再適應」則有患者的「復原生命的展示」。隨著適應期的流轉,一旦患者的身體再度遭遇風險性,生命經驗再度斷裂,回到適應初期。患者的適應由生命經驗的斷裂,及因應資源的轉化與疾病意義的尋求,到重回生活經驗脈絡的追尋,是寓居負傷的故事脈絡裡,嘗試學習和疾病共處的歷程。患者的生活傳記史敘說者能透過他者的同理傾聽,並適時回應患者的苦惱之聲的召喚,慢性病患者終能重構生命意義。因本研究場域僅侷限在南部某區域教學醫院,田野觀察時間稍短,且參與觀察的時間偏重在白天,在考量受訪族群與研究者與受訪著的互動的因素之下,建議往後的研究者可擴大受訪族群,在與受訪者有良好的互動前提之下,亦可邀請受訪的親密照顧者加入受訪的行列,以利將洗腎者因應資源流動歷程的概念豐富化。
Diagnoses of end stage of renal disease (ESRD) and experience of major sufferings can shatter one’s life beliefs. To accomplish the adaptive task and re-enact the performance function in daily life make the quite serious challenge for those sufferers. The purpose of this study is to find the adapting and transforming processes of the coping resources of the hemodialysis sufferers in light of the bio-psycho-social health model. In this qualitative research, ten patients (in the ratio of 4 to 1 between women and men, with mean age 45.1 years and hemodialysis course 6 years, were interviewed twice during the 6 months interval from the hospital-based hemodialysis centers in the southern Taiwan through the cross-sectional design. As the results of this research showed, the decisive structures of the adapting and transforming processes include: (1) impact of no more lived body, (2) shock of alien self and stigma, in the early phase, and (3) flexibility of bodily resource, (4) transformation of renewal self, (5) re-adaptation of the resilient life in the middle-later phase. When the mind-body was felt harmful overwhelmingly, the patients’ life experiences were disrupted. The patients gradually learned to live with the chronic illness and reconstruct the meaning of the suffering encounters. The ill person who turned illness into story transformed fate info experience. Those who have been objects of others’ reports are now telling their own stories. As they do so, they define the ethics of voices in their own words, and the wounded storytellers became the wounded healers, in the narrative reconstruction modes. Finally, the implications, suggestions and limitations about the study were discussed.