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題名：癌症晚期患者家庭的需求與社會工作
作者：李素慶
作者(外文)：LI, SU-QING
校院名稱：東海大學
系所名稱：社會工作學系
指導教授：王篤強
呂朝賢
學位類別：博士
出版日期：2022
主題關鍵詞：癌症晚期；家庭；需求；社會工作；靈性；Terminal cancer；family；needs；social work；spirituality
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進入癌症晚期的病患及其家庭面臨諸多脆弱與壓力，在身體、心理、社會、靈性等層面存在各種需求。這些需求的滿足與患者家庭的身心靈健康狀況、生活品質與福祉有著緊密的聯繫，社會工作能在其中發揮積極的影響。社會工作的實務基於需求的界定與評估，但關於晚期患者家庭需求的研究，目前多見於醫療護理領域的文獻，從社會工作立場對癌症晚期患者家庭的需求做出相對全面和內涵清晰的界定依然缺乏，社會工作對晚期患者家庭的介入也未能充分開展，且大量的研究是在西方文化社會脈絡中進行。基於此，本研究冀圖從多元文化社會工作立場出發，探查華人文化下的中國癌症晚期患者家庭需求的面向和內涵，並在此基礎上提出社會工作的介入參考。
本研究首先回顧了現有研究對於癌症晚期患者家庭需求的探討，提出了可能存在身體、心理、社會和靈性層面的需求，也回顧了社會工作可能的介入面向和設想作為前瞭解。然後以來自五個家庭共十位癌症晚期患者和他/她們的主要照顧者為研究對象，以一對一深度訪談為主、田野觀察為輔收集癌症晚期患者家庭的需求資料，用「詮釋學」作為主要方法論立場，開放性地探索關於癌症晚期患者家庭需求的「真相」，發展癌症晚期患者家庭的需求體系。在此基礎上，透過由六名社會工作者及相關專業工作者組成的焦點團體小組訪談，進一步展開基於需求的社工實務介入探討。本研究發現：
一、癌症晚期患者家庭需求包括五個面向。即身體層面、心理層面、靈性層面、指向家庭和社會層面五個面向，各個面向又各有多項具體內涵，其中一些內涵在訪談中被廣泛和頻繁提及因而是所在面向的主要內涵，且服務接受者和提供者對於需求的理解存在差異。家庭的需求實質是以「和」為貴，但求心「安」。需求的澄清為社會工作介入癌症晚期患者家庭服務的需求評估和服務開展在理論性建構和實務規劃上提供基礎性參考。
二、家庭隨著晚期患者病程發展的不同時程需求重點有所變化。社會工作者在實務場域中需要敏覺服務對象的狀態，留意家庭需求存在動態變化的特徵，並及時調整因應重點。
三、社會工作對於癌症晚期患者家庭的介入服務需要整合多種資源協同工作。其中，身體與靈性層面的需求容易被專業工作者忽視，也較難在較短時間內快速得到滿足，尤其需要得到更多的關注。癌症晚期患者家庭需求存在面向廣泛、內涵豐富之特徵，很難經由單一資源的支持而得到回應；此外，巨額醫療費用的支出帶來經濟壓力，「晚期」診斷伴隨而來的死生議題作為危機事件給家庭帶來衝擊，很容易使得癌症晚期患者家庭面臨多重困境，因此透過個案管理的方式，整合多種資源協同工作是社會工作介入的重要工作手法。
四、對癌症晚期患者家庭的關懷需要宏觀的環境與政策支持。包含患者本人在內的公眾對於癌症（晚期）存在污名化的認知，有待改善。此外，整合性緩和治療的施行需要支持跨專業協作的機制和政策支持。
基於研究的發現，本文對於社會工作介入癌症晚期患者家庭服務的需求評估和服務開展提出若干理論建議與實務建議，並提出未來的研究可以在不同文化下癌症晚期患者家庭的需求面向和內涵異同、社會工作介入實作的細化探討、社會工作者的訓練方案以及本研究發現與結論在實踐中的檢視等方向上展開。本研究對於研究問題提出了回答，完成了研究目標，但也難免受限於研究對象的代表性和中國大陸社會工作介入癌症晚期患者家庭的服務尚未深入之現狀。
Patients with terminal cancer and their families are vulnerable and stressed, and they usually have kinds of physical, psychological, social, and spiritual needs, and as well as needs to the family itself. The satisfaction of these needs is closely related to the physical, psychological and spiritual health, quality of life and well-being of the patient's family, in which social work can play a positive role. The practice of social work is based on the definition and assessment of needs. However, researches on needs of family with a terminal cancer patient are mostly seen in the literature of medical care. A relatively comprehensive and clear definition of needs of family with a terminal cancer patient from the perspective of social work is still lacking, and social work intervention to these families is not fully carried out. What’s more, most relative studies are carried out in the context of Western culture and society. Based on which, this study aims to explore the dimension and connotation of needs of family with a terminal cancer patient in China under the Chinese culture from the standpoint of multicultural social work, and on this basis, propose how can the intervention of social work be implemented.
This study first reviews the existing research on needs of family with a terminal cancer patient, suggesting that there may be physical, psychological, social and spiritual needs. It also reviews the possible intervention dimensions and assumptions of social work as a pre-understanding. Then, five terminal cancer patients and their main caregivers from their families were selected as the research objects, and the data on needs of these families were collected mainly by one-on-one in-depth interviews and focus group interviews, and supplemented by field observation. Hermeneutics was used as the main methodological standpoint to explore the "truth" about the needs in an open way, and to develop the needs system of families with terminal cancer patients. On this basis, a focus group interview with six social workers and related professionals was conducted to further explore the need based practical intervention of social work. The findings of this study are as follows.
First, the needs of family with a terminal cancer patient include five dimensions. Namely, the physical dimension, the psychological dimension, the spiritual dimension, the dimension to family and the social dimension, each dimension has a number of specific connotations, some of which are widely and frequently mentioned in the interview, so they are the main connotations of these dimensions. There are differences in the understanding of these needs between service recipients and service providers. The essence of the needs of the family is "harmony"（he,和）, and they pursue inner peace. The clarification of the needs provides a basic reference for the needs assessment and service development of social work intervention in the family services in theoretical construction and practical planning.
Second, the emphasis of family needs change with the different progression of terminal patients. Social workers should be sensitive to the status of the service users in the practical field, pay attention to the dynamic characteristics of family needs, and timely adjust the priorities.
Third, Social work intervention services for families with terminal cancer patients need to integrate multiple resources and work together. Among them, the physical and spiritual needs are easy to be ignored by professionals and difficult to be quickly satisfied in a short period of time, especially in need of more attention. Needs of these families are widely oriented and rich in connotation, which is difficult to be satisfied through the support of a single resource. In addition, the huge medical expenses bring economic pressure, and the issues of death accompanying the terminal diagnosis bring impact to the family as a crisis event, and so on, which is easy to make these families face multiple difficulties. Therefore, it is an important method of social work intervention to integrate multiple resources through case management.
Fourth, the care for families with terminal cancer patients needs macro environment and policy support. The stigma of (terminal) cancer among the public, including patients themselves, needs to be changed. In addition, the implementation of integrated palliative care requires mechanisms and policy support so that cross-professional collaboration can be achieved.
Based on the findings of this study, this paper puts forward several theoretical and practical suggestions on the needs assessment and service development of social work intervention in families with terminal cancer patients. It is also suggested that future research can be carried out in common and different aspects on needs of families with terminal cancer patients between different cultures, detailed discussion on the implementation of social work intervention, training programs for social workers, and testing the findings and conclusions of this study in practice. This study has answered the research questions and accomplished the research objectives, but it is inevitably limited by the representativeness of the research subjects and the status quo of social work intervention in families with terminal cancer patients in mainland China.
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