器官捐贈者父母受助經驗與生活適應之探討

Exploring the Experience of Receiving Help and Life Adjustment of Cadaveric Organ Donor's Parents

呂彥萱(Yen-Hsuan Lu)

指導教授 ： 蔡佩真

國立暨南國際大學/人文學院/社會政策與社會工作學系/碩士(2016年)

摘要

本研究核心關懷之議題在於器官捐贈者父母於子女死亡及器官捐贈之過程與影響，以及後續所接受的相關支持與協助以及自我因應，如何影響其生活適應。因此研究目的為瞭解其在後續生活適應的過程中，分別在正式及非正式支持系統所獲得的支持與協助內容、服務接受的相關正、負向經驗以及服務使用的意義和期待。研究過程中採用質性研究方法，透過參與器官捐贈移植登錄中心的家屬關懷活動及家訪募集研究對象，針對10位器官捐贈者父母進行個別深入訪談，並以認知行為理論中的ABCDEF模型、社會建構論及Neimeyer的意義建構理論來做為本研究理論架構及分析的觀點。
研究結果方面，在過程與相關影響的部分：首先器官捐贈者父母其在考慮為子女進行器官捐贈之前，對於子女腦死狀態及醫療處遇極限的理解十分重要，將開啟其在極力搶救之外思考器官捐贈的可能；而在進一步思考器官捐贈及捐贈種類的考量上，除了對於器官捐贈的認同之外，對於生死觀的認知、遺體外觀以及從捐贈者、家庭、社會及自身的多重考量，也都是影響器官捐贈的重要因素；此外研究者也發現在整個決策及實行的過程中，同樣身為捐贈者父親及母親，其在擁有同等法定決策順位之下卻背負不同的決策壓力，這也影響其後續生活適應的狀況及家庭關係；而在喪子女事件的影響方面，生理的部分主要為生活作息的失調、心理層面主要為白髮人送黑髮人的悲傷而衍生的負面情緒反應，家庭部分出現家庭成員對於悲傷的適應狀況存在落差、逝者角色無人承接或承接不全的情況。而在器官捐贈的影響上，自我方面主要為器官捐贈意義的動搖與崩解，此外仍需面對家庭關係的緊張及社會壓力、降低社會參與的情況產生。
而研究結果在後續的受助經驗及生活適應的部分，捐贈者父母於自我因應方面，透過持續與死者的連結、情緒的宣洩轉化及尋找器官捐贈的答案與意義來進行適應；而在正式支持系統的協助上，醫院方面提供的服務內容仍以「器官捐贈」為主、「喪慟關懷」為輔，後續的追蹤及相關活動的辦理，各醫院間的存在著不小的落差；而器官捐贈相關機構方面，其所提供的服務與協助就以「喪慟關懷」及「生活適應」為主，並且在相關議題的倡議上扮演重要的角色。而非正式支持系統所提供的協助，以日常生活工具性的支持及陪伴為主，特點在於支持與協助的及時性、可近性都相較於正式支持系統高，不過無論是正式或非正式支持系統，所提供的協助也在幫助捐贈者父母對於喪子女的失落事件及器官捐贈意義的建構及再建構，或是強化與穩固其對生活適應有幫助的認知及想法，讓捐贈者父母找到屬於自己的答案及出口。因此，在研究建議上方面，研究者認為衛生福利部核准之各區移植醫院，無論等級應加強器官捐贈家屬喪慟關懷相關服務的制度化及普遍化；而器官捐贈相關機構可再增加服務及活動內容的多元化，以及有計畫性的招募及培訓志工；最後在未來研究建議上，可針對服務提供者的觀點，來了解其在器官捐贈家屬關懷服務上所面臨的實務困境。

關鍵字

器官捐贈 ； 喪慟關懷 ； 生活適應 ； 受助經驗 ； 意義建構

並列摘要

This study focuses on the process of cadaveric organ donation by parents from their deceased children and its impact as well as how the support and assistance they subsequently receive and their coping affects their life adjustment. Therefore, this study is aimed to understand the content of the support and assistance these parents receive from formal and informal support systems during their subsequent coping in life, positive and negative experiences with service reception, meanings and expectations of service utilization. The qualitative research method was adopted and in-depth interviews were conducted with the parents of 10 cadaveric organ donors who were recruited in family care activities organized by participating registration centers for cadaveric organ donation and by making visits to donor families. The ABCDEF model of the cognitive behavioral theory, social constructivism and Neimeyer’s meaning reconstruction theory were the selected views on which the theoretical framework and analyses were based.
Findings concerning the process and its impact reveal that it is vital for parents of cadaveric organ donors to understand that their children are in the brain death state and beyond medical treatment before they can consider cadaveric organ donation from their children and this will open up the possibility of their considering cadaveric organ donation while striving to save their children. For them to further consider cadaveric organ donation and types of donation, besides their acknowledgement of cadaveric organ donation, their view of life and death, the appearance of their children’s bodies afterwards, and multiple considerations of the donors, the families, the society and the parents themselves are all key factors that affect cadaveric organ donation. It is also found that fathers and mothers of donors face different levels of decision-making pressure in the entire process of decision making and implementation despite their equal precedence in law for decision making and this also affects their subsequent life adjustment and family relationships. For the impact of the loss of their children, the physical impact is mainly disorder in daily routines while the psychological impact is mainly the negative emotions from the pain of parents having to bury their children. For the family, it is seen that family members cope with their loss differently and the role of the deceased either has nobody to take over or can only be taken over partially. The impact of cadaveric organ donation is mainly that its meaning has wavered and disintegrated for these parents and they also have to deal with tensions in family relationships and social pressure, both of which contribute to reduced social engagement.
Findings concerning subsequent experiences with support and life adjustment show that parents of donors cope with the loss by continuing connecting themselves with the deceased, releasing and transforming their emotions and looking for the answer and meaning of cadaveric organ donation. For the assistance from formal support systems, services provided by hospitals remain focused on ‘cadaveric organ donation’ complemented by ‘bereavement care’ and include follow-ups and organization of related activities while there are considerable gaps between hospitals in this respect. Services and support provided by facilities related to cadaveric organ donation focus on both ‘bereavement care’ and ‘life adjustment’ and play an important role in advocacy of related issues. Assistance from informal support systems are mainly instrumental support for everyday life and company and are characterized by greater timeliness and approachability compared with their formal counterparts. However, assistance from both formal and informal support systems is intended to help parents of donors with meaning construction and reconstruction regarding their loss and cadaveric organ donation, or strengthen and firm up perceptions and thoughts that help their life adjustment so that they can find their own answers and outlets. Therefore, it is suggested that local transplant hospitals approved by the Ministry of Health and Welfare at all levels should redouble their efforts on systemization and universalization of services related to bereavement care for families of donors while facilities related to cadaveric organ donation can further diversify their services and activities and recruit and train volunteers systematically. Finally, future research can examine the practical challenges in care services for families of donors from the perspective of service providers.

並列關鍵字

cadaveric organ donation ； bereavement care ； life adjustment ； experience with support ； meaning construction

參考文獻

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