[[alternative]]The Mothers' Experience Under the Pressure of Taking Care of Their Children with Cancer

[[abstract]] 從確定受孕開始，父母就對孩子充滿各種幻想與期待，孩子的誕生使家庭的圓更為完整，可是有些孩子尚未茁壯成人就罹患癌症，使得父母經歷完美孩子的失落，更為家庭帶來無數的壓力與危機。 本研究係以Boss（1988）的家庭壓力理論進行探討，並採用Colaizzi（1978）之現象學研究法調查癌症病童主要照顧者－母親主觀知覺的家庭壓力經驗。研究對象係北部某教學醫院六位出院病童母親，在運用質性研究的深度訪談法進行訪談後，發現母親照顧癌症病童期間經歷的家庭壓力經驗包含了四個現象主題：「依附性失落」、「母性角色緊張」、「付出所有，心力交瘁」、「家庭衡定」。在孩子初次被宣判為癌症、接受治療、疾病緩解或惡化、以及新的發展需求出現時，都會讓母親面臨「依附性失落」；當孩子接受治療時，母親在照顧病童時更會產生「母性角色緊張」；為了保護孩子，充滿對孩子愧疚感與罪惡感的母親會產生「付出所有，心力交瘁」；可是為人母的職責不容許母親輕言放棄，因此在「家庭衡定」此一主題中母親會運用家庭內、外在資源的協助和透果與他人的互動重新建構對情境的正向定義，以達到調適。 研究結果除提供兒童癌症病童家屬、臨床實務工作者以家庭為中心及以生活經驗本質為導向之護理依據外，透過對癌症病童家庭壓力經驗所行的整體性瞭解，亦可作為一有用的背景知識及反省資料，並且可應用至其他慢性病童家庭之照顧，更有助於提供受苦者一個契合個案真實情境與生活經驗的護理措施與提昇照顧品質。未來研究可合併其他研究方法，對家庭壓力現象作全面性瞭解。 [[abstract]] In the beginning of the certainty of pregnancy, varieties of expecting and illusions make the parents’ hearts stuffed toward the expecting baby who will complete the couples to be a whole family. Yet some children are found cancer carriers intrinsically, torturing the parents by losing hearts, even bringing tremendous stresses and crises into the family. The investigation process of this research is based on the model of family stress (Boss, 1988), and using the method of Colaizzi’s (1978) phenomenology to inspect the experiences of the subjective sensation of a mother who suffers family stresses through taking care of their child with cancer. The investigation objectives are the six mothers with their child with cancer who have been discharged from a hospital in the northern part of Taiwan. After a deeply qualitative interviewing with these mothers, their experiences of family stresses through caring for their children with cancer can be classified into four phenomena: attachment loss; maternal role strain; pay off everything, mentally and physically exhaustion; and family equilibrium. The mother will experience “attachment loss” when her child is being sentenced as a child with cancer, receiving treatment, disease becoming remission or relapse, or some requirements of new development coming up. During the child being treated, the mother who takes care the child will call “maternal role strain” into being. In order to protect children, mothers who are full of sense of shame and guilt will have “ pay off everything, mentally and physically exhaustion”. In order to protect children, mothers who are full of sense of shame and guilt will have “ pay off everything, mentally and physically exhaustion” . However, the maternal responsibility not allowed the mother to give up easily, therefore in the subject of “family equilibrium”, she will use the aid of resources inside and outside family and through the reaction with others to re-construct the positive definition of condition in order to achieve accommodation. The outcome of this research provides the regulations of nursing and caring which are under the guiding of family centered and qualitative experiences, for the family members of the children with cancer and for the clinical affair workers taking care of the children with cancer. It also can be used as background knowledge and introspection materials which includes the entirely understanding of the experiences of family stresses of the children with cancer, and can be applied to take care of children with chronic disease, backing up the sufferers with a compatible real case and nursing and caring of living experiences to improve the quality of caring for. In the future, this research would be incorporated with other investigation method to realize fully the phenomenon of the family stresses.