|Abstract: ||了解個案才能提供適當的護理，為了能對海洋性貧血患孩提供更好的照顧，本研究之目的在探討β型重型海洋性貧血患孩的雙親於確立疾病診斷之後，所感受到的壓力源、相對剝削的壓力感、與所採取的因應策略。在與十七位β型重型海洋性貧血患孩的雙親（六位父親，十一位母親）進行深度訪談後；從訪談過程之錄音帶，轉寫成訪談過程記錄300頁，再以內容分析法分析歸納訪談的結果。相隔一週編碼者本身信度為0.96，不同編碼者間信度為0.77。 從研究結果歸納出患孩雙親所感受到的壓力源有疾病壓力源與人際壓力源兩大類。疾病壓力源，包括疾病特性（遺傳、生長發育、鐵質沉積、死亡），醫療措施（輸血、注射排鐵劑、骨隨移植、……），醫療環境（經費、相關手續、場所）、患孩的健康狀況（平日及突發的健康狀況）。人際壓力源來自患孩、患孩手足、配偶親朋、其他病童、醫護人員、及人群大眾等；全數受訪者都談到「患孩」為壓力源，主要是擔心患孩的想法與感受。 由相對剝削的概念分析研究結果得知，上述兩大壓力源會造成雙親們有「不一樣、不確定、不方便、不舒服、不能控制、不合作、不適應、不安全」等壓力感。其中以“不一樣”是全數個案共有的壓力感，主要是為著患孩的外觀、發育上的不一樣感到壓力。 雙親們曾採用的因應策略有三種：一是處理壓力感：包括防禦、發洩、抒解；二是處理壓力源：包括改變壓力源、不與壓力源接觸、少與壓力接觸；三是調整自己：包括調整想法與能力。由於個案數少，本研究無法進一步分析比較患孩父親與母親間的差異，未來可以本研究結果作成問卷繼續探討患孩父母親壓力源、壓力感及因應策略之差異及影響因素。|
The adequate nursing care must be based on understanding the clint. In order to provide better care for Thalassemia child, the purposes of this study were to investigate the stressors, stress of relative deprivation and coping strategies of the parents whose children were suffered from β-Thalassemia major. The method of this study were to proceed indepth interviews with 17 parents (including 6 fathers and 11 mothers) whose children were suffered from β-Thalassemia major. The process of interviews were recorded on tape and translated into 300 pages of interview recording. The interview data was analyzed by content analysis. The intra-scorer reliability was 0.96 at the interval of one week after first coding, and the inter-scorer reliability was 0.77. These stressors susceptible to the parents were devided into two parts: diseased - related stressors consisting of disease characters (inheritance, development, hemosiderosis, death etc.), medical managements (blood transfusion, iron - chelating agent injection, bone marrow transplantation, etc), medical environments (cost, relative procedure, area etc.) and diseased child''s health condition (general condition and abrupt condition). Interpersonal - stressors were produced by diseased child, siblings, relatives, other diseased child, doctor and staff, and community. 「Stressors from diseased child」 was mentioned by all of the 17 parents, because the they all worried about what the child''s though and what the child''s thought and what the child''s felt. Analyzed by the concept of relative deprivation, both of the major stressors would produce the stress of the parents. There are different, uncertain, inconvenient, discomfortable, unable to control, discooperative, maladusted, insecure. All of parents mentioned that the difference of the appearances and the difference of growth were be a stress to them. Parents have used three kinds of coping strategies. First of all was to manage the stress, including defense, abreaction and relief. Secondary was to handle the stressors, and avoid to contact with sressors. Third was to adjust oneself, including to change thoughts and abilities. It is difficult to analyze the difference between fathers and mothers and the relative factors which influence the susceptibilities of parents because of the small case number. It has great potential to do continuing research by questionnaires based on the results of this study.