癌症末期患者其成年子女照護經驗之詮釋研究

The Caring Experiences of the Terminally Cancer Patients’ Adult-children in Taiwan ─ A Hermeneutics Research

歐陽愛華(Aihua OuYang)

指導教授 ： 李佩怡

國立臺灣師範大學/教育學院/教育心理與輔導學系/碩士(2006年)

摘要

癌症末期患者其成年子女照護經驗之詮釋研究
研究者：歐陽愛華
中文摘要
本研究探討一位成年子女照護癌症末期母親的照護經驗。研究目的有三，理解癌症末期患者其成年子女的照護經驗；理解至親患癌對其成年子女的影響；理解成年子女所需的協助與支援。
本研究以詮釋學為方法論，以研究者自我訪談的方式獲得研究文本。研究者對「訪談逐字搞」與「受訪者日記」等原始資料進行詮釋，研究結果是研究者在詮釋原始資料過程中以「理解—再理解」的詮釋循環所獲得的深刻理解。
回應研究問題一「癌末患者之成年子女於親人罹癌過程中的照護經驗」，詮釋出下列五點：
（一）得知至親末期癌症的震驚與無法相信，凸顯過去對癌症的無知。
（二）清楚醫病界線、過多癌症病人、醫護人員態度與醫療軟硬體設備皆影響家屬的照護經驗。
（三）隨著至親身體功能漸失，家庭成員的照護人力、內容與負荷就越大。
（四）面臨至親臨終時刻的經驗，由不知到被迫接受，由否認事實到說出祝福。
（五）癌末病人、癌症家屬與醫療系統於照護過程中的連結及彼此影響。
回應研究問題二「癌末患者之成年子女於親人罹癌過程中所受影響」，詮釋出下列六點：
（一）認知層面包含希望感的建立、相信更大的力量、相信靈魂的存在，與建立起更加清楚的人生原則。
（二）情緒層面包含子女的情緒狀態隨著至親起伏、恐懼、無力與無助、罪疚感與心疼，在抗癌的漫漫長路上共同受苦。
（三）行為層面包含將焦點與注意力放在外在人事物上、探求至親患癌的可能原因、禱告，與執行所領悟之人生原則。
（四）家庭層面包含調整原有的生活常態、改變與至親的互動，與能者多勞。
（五）社會層面包含親友與社會對癌病世界的不理解與隔閡，以及從事的工作量減少。
（六）癌末帶來死亡的衝擊，接受人之必死，以及相信靈魂與更大力量的存在，能帶來受苦的出路。
回應研究問題三「癌末患者之成年子女於親人罹癌過程中所需協助與支援」，詮釋出下列三點：
（一）在照顧至親上，家屬需要知道至親的身體病況以及獲得確切的醫療訊息，以提供及時照護。
（二）在照顧至親上，家屬需要情緒宣洩的管道與心理支持，俾能全然提供照護。
（三）在照顧至親上，家屬需要靈性力量的照顧與護持。
最後本研究分別對癌症末期成年子女、癌症家屬之自我照顧、接觸末期癌症病家的助人工作者與未來研究方向提出建議，期許癌症病家在抗癌與受苦之路上獲得較多的溫柔、支持、力量與接應。
關鍵字：癌症末期患者、癌症家屬、成年子女、照護經驗、詮釋學

關鍵字

癌症末期患者 ； 癌症家屬 ； 成年子女 ； 照護經驗 ； 詮釋學

並列摘要

The Caring Experiences of the Terminally Cancer Patients’ Adult-children in Taiwan ─ A Hermeneutics Research

Aihua OuYang

ABSTRACT

The purpose of this study was to investigate the caring experiences of an adult daughter who was looking after her terminally ill cancer mother. The specific aims of the study were: (1) to contact and understand the caring experiences of the terminally ill cancer patients’ adult-children; (2) to understand the cancer’s impact of the adult-children in the caring process; (3) to understand the assistance and support which the adult-children needed in the caring process.
A hermeneutical approach was selected to achieve the purpose and specific aims. The research text was collected from the researcher’s self-interview and diary. The transcriptions and field notes were interpreted following the hermeneutical concepts. Through the thick description, the hermeneutical circle of understanding and the dialectical questioning, the deep understanding of the raw data was obtained.
Regarding to the caring experiences, the results of this study included three main parts.
First, the caring experiences of the terminally ill cancer patients’ adult-children.
(1)The adult-children felt shocked and disbelieved when the diagnosis was the terminally ill cancer. And which point out that the ignorant of the cancer in the past.
(2)There are some factors of impact the caring experience of the family members. Which are ‘clear boundary between doctor and patient’, ‘too many cancer patients’, ‘medical personnel’s attitude’, and ‘medical equipment of hardware and software are all influence’.
(3)As the beloved's body function is lost gradually, the greater caring manpower, content and burden of family is.
(4) The family's state changes from not knowing the situation to forcing to accept it, from denying the fact to saying blessings in facing the beloved's death moment.
(5)The terminally ill cancer patients, the family and the medical systems are linking and influencing each other during the caring process.
Second, the impacts of the cancer to the adult children in the caring process.
(1) In the cognitive aspect, the adult children build the hope of the beloved, believe the greater strength, believe the existence of soul, and set up the clearer principle in life.
(2) In the mood aspect, the adult children's mood goes up and down by following the beloved’s mood state. Frightened, helpless, guilty and distressed are their emotions to the beloved. They suffer together in the endless long road to the cancer.
(3) In the Behavior aspect, the adult children focus on the external personnel things, seek the beloved’s possible reason of having cancer, say prayers to God, and execute the principle of life.
(4) In the family aspect, the family members change the household surroundings, the relationships with the beloved.
(5) In the social aspect, the families sense misunderstanding and estrangement from the friends and society. The families reduce their work.
(6) The cancer brings the impact of the death at the end; the ones that accepted people must die, and believe the existence of soul and greater strength, can bring the outlet of suffering hardships.
Third, the adult-children need the assistance and supports during the caring process.
(1) The family needs to know the patient’s state of his/her illness body and obtain precise medical information, in order to offer caring in time.
(2) The family needs psychic supports and some ways to express their emotions when they taking care the patient. These could help them to give their caring totally.
(3) The family needs the caring and support of spirit strength when they taking care the patient.
Through the findings of this study, some recommendations were given to the terminally ill cancer parent’s adult-children, the family, the helpers who taking care the family, and other researchers. In the way of suffering and fighting with cancer, the researcher hopes the family who could have more tender treatment and more strength, support, and assistance from the others.

KEY WORDS: terminally ill cancer patients, family with cancer patients, adult children, caring experience, hermeneutics

並列關鍵字

terminally ill cancer patients ； family with cancer patients ； adult children ； caring experience ； hermeneutics