帶著思念往前行-- 探討雙親痛失罕見疾病兒的再適應經驗

Keep going forward with the memory— Exploring the re-adjustment of the parents who lose their child with rare disorders

蘇鈴潔(Ling-Jie Su)

指導教授 ： 林萬億

國立臺灣大學/社會科學院/社會工作學研究所/碩士(2009年)

https://doi.org/10.6342/NTU.2009.02989

摘要

罕見疾病的不可治癒性，讓死亡威脅時時困擾著病患及其家庭。尤其負擔養育責任的雙親在被迫承受孩子的罹病並扛起照顧重擔後，又必須面臨喪子的失落。連續的打擊已成為不可逆的事實，但生者仍保有幸福與生存的權利。據此，本研究目的有三：第一、了解罕見疾病患者之父母遭遇照顧病孩與喪子失落的經驗；第二、探究罕見疾病患者之父母如何從悲慟中從新適應生活；第三、期盼提供專業助人工作者在服務相關人口群之參考。
本研究採用質性研究方法來進行，透過七個家庭中八位父母的經驗，探究自發的韌性與外得的力量如何點滴累積，以度過因疾病接踵而至的困境，並帶著對孩子的思念迎向未來。為增加資料的豐富性，亦訪問受訪父母之親友與專業人員各一名，以及受訪父母所提供之文本資料做為輔助參考。

本研究發現可分為以下三點：
一、奮戰罕見疾病的過程中，父母會透過病程與情境轉換認知，進而激發能量並做出因應行為，尤其多數家庭將照顧負荷一肩扛起，用功能分工模式來對抗疾病帶來的衝擊，直到無法承受之時才尋求社會網絡的支援。再者，父母向外求援的目標皆以非正式支持系統為主，對專業體系可提供的幫助了解有限。
二、父母在面對喪子衝擊的因應方式包括，生活啟示、宗教靈性的寄託、生死世界的情感聯繫、利他行動與重整生活等。讓他們得以在過程中獲得悲慟情緒緩減、意義重建、灌輸希望，以及轉化生命與生活態度等實質效益，進而平衡思念與生活。
三、喪子父母在不同時空下與家庭、社會網絡及風俗文化進行多元的互動交流，這些經驗點滴累積都牽動著雙親後續如何重新適應沒有逝子生活的行動。

依據研究發現與分析，本研究建議如下：
一、實務專業人員方面：其一為「提供以家庭為中心的服務」，以協助家庭共同面對疾病與喪子的衝擊，並提高對性別及年齡等個別性差異的敏感度；其二為「靈性資源的及早引進」，讓父母在照顧及失喪的連續打擊中獲取能量，但亦注意社經地位所造成運用上的偏誤；其三為「專業合作模式的建立」，透過資源管理，將各專業及組織間的服務銜接。
二、政策制度方面：提升資源的能見度及服務體系的暢通，並考量不同時間點與需求的關聯，尤其在訊息短缺的偏遠地區更應重視；修改罕見疾病的診斷標準及相關制度，以配合身心障礙者權益保障法的施行；加強專業人員對罕見疾病特殊性的了解與訓練，以促使患者其及家庭獲取最適切的服務。

關鍵字

罕見疾病 ； 喪子 ； 再適應 ； 意義重建

並列摘要

The purpose of this study is to explore the experiences that parents nurture their child with rare disorders and how they adjust his/her death. At the same time, to propose some suggestions for professional helpers.
The study adopts a descriptive qualitative approach. Hence, I took the depth interview as the main method of data-collecting, sampling 8 parents who lost their child with rare disorders. Besides, these samples also include a professional staff who is charged with psychological services to supplement the research data.
After analyzing the data collecting from 10 interviewees, the results of this study present as followings:
First of all, during the process of fighting against the rare disorder, parents would change their perceptions through the struggle they suffered and children’s conditions. Also, it increased their potential energy and coping methods. Most of the families were bored with care stress nearly and didn’t seek others’ help until burning themselves out. Moreover, the parents would ask their relatives and friends for help. However, they knew quite a few about formal services and resources.
Secondly, bereaved parents would use some coping methods to face the misery, including life inspiration, religion supporting, altruistic activities, and rearranging life. In doing so, they were able to reduce the grief, reconstruct the meaning , infuse hope into their life, and change the attitude towards it, then, helping them to readjust the new life with without the deceased child.
Finally, bereaved parents would interact with families, social networks, and customs in different time and space. All experiences would influence their actions about how to readjust new life without the deceased child.
Considering all the above, this study bring up some suggestions:
1) About the services providers, they should provide family-oriented services and spiritual resources as soon as possible, and set up the model of professional cooperation.
2) Regarding service policy and systems, to increase the resources’ visibility and flow them freely without obstructions is necessary, especially in remote regions. Furthermore, revising the policy which is about the rare disorders is the most important way to fit in with the new law. Last but not least, enhancing professionals’ training about knowing rare disorders can lead patients and their family get suitable services.

並列關鍵字

Child with rare disorders ； Bereavement ； Reconstruct the meaning ； Readjustment

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