口腔癌病患主要照顧者的社會支持之研究

本研究以五位照顧家中口腔癌病人，且曾接受過民間非醫療單位提供服務之主要照顧者為研究對象，進行深度訪談。從主要照顧者的照顧經驗出發，探受損及形象改變乃至自我封閉的歷程中，所擁有的正式與非正式社會支持系統。嘗試了解照顧者與支持系統互動的經驗、支持系統如何提供服務與協助，以及當家庭面臨重大事件時，支持系統所扮演的角色等。研究發現，口腔癌病人之主要照顧者所擁有的社會支持網絡，正式支持系統由醫療系統、民間非醫療單位(NGO)及政府單位構成，而非正式支持系統則來自家人、親友、雇主同事，以及同樣罹患口腔癌之病友或其照顧者等；所提供的支持內容，展現在經濟生活、醫療照護、情緒關懷、自我照顧及增進社會互動等方面。其中，民間非醫療單位的介入，能幫助增強主要照顧者及家庭與社會資源網絡的連結，緩衝主要照顧者面對各項重大事件時的壓力，增進其因應能力，同時，有機會增加非正式支持系統網絡的廣度，成為新的支持來源。然而，當正式支持系統提供協助的過程中，程序過於繁瑣、規則不清或限制較多、助人者不適當的建議及工作人員態度不夠溫暖等，都可能造成主要照顧者的困擾與不便；而來自非正式支持系統的支持協助更是如同兩面刃，過度的關注與不當的要求帶給主要照顧者更大的壓力與負荷。癌症病患的主要照顧者，是社會工作者及各社會福利資源體系較少關注的對象之一，希冀透過本研究，社會福利資源網絡能看見這群照顧者的需求，增加相關的支持服務，並教育社會大眾多給予照顧者正向鼓勵，友善的社會互動將適照顧者最重要的支持來源。

關鍵字

口腔癌；主要照顧者；社會支持系統；民間非醫療單位

並列摘要

This study conducted in-depth interviews with five main caregivers who took care of oral cancer patients at home and had received services from private non-medical units. Starting from the care experience of the main caregiver, explore the formal and informal social support systems in the process of damage, image change, and even self-enclosure. Try to understand the caregiver’s experience in interacting with the support system, how the support system provides services and assistance, and the role of the support system when the family faces major incidents. The study found that the social support network owned by the main caregivers of oral cancer patients, the formal support system consists of the medical system, non-medical organizations and government, while the informal support system comes from family members, relatives and friends, employers and colleagues. As well as patients or their caregivers who are also suffering from oral cancer; the support content provided is displayed in economic life, medical care, emotional care, self-care, and social interaction. Among them, the intervention of private non-medical units can help strengthen the connection between the main caregivers and the family and the social resource network, buffer the pressure of the main caregivers in the face of various major incidents, and improve their ability to respond. At the same time, there is an opportunity to increase informality. The breadth of the support system network has become a new source of support. However, when the formal support system provides assistance, the procedures are too cumbersome, the rules are unclear or restrictive, the helpers' inappropriate suggestions, and the staff's attitude is not warm enough, etc., may cause confusion and inconvenience to the main caregivers; and The support and assistance from the informal support system is even more like a double-edged sword. Excessive attention and improper requests bring greater pressure and load to the main caregivers. The main caregivers of cancer patients are one of the objects that social workers and social welfare resource systems pay less attention to. It is hoped that through this research, the social welfare resource network can see the needs of this group of carers and increase related support services. And to educate the large number of society to give positive encouragement to caregivers, and friendly social interaction will be the most important source of support for caregivers.