中年精神障礙者手足照顧經驗之初探

Abstract

實務工作中，常看見精神障礙者的照顧者為父母、配偶、子女，隨著個案生命延續與家庭生命週期改變，特別是個案單身、未有子女、父母照顧能量不足時，精神障礙者健康手足扮演重要的角色。然而，在實務工作與學術領域對精神障礙者手足照顧的研究不足，缺乏對此照顧者的了解。 本研究目的：一、了解中年精神障礙者手足照顧如何在家庭中協商出來。二、整理中年精神障礙者手足的照顧經驗。 本研究是質性研究，採深入訪談方式，透過一對一面談，獲取當事人的觀點，詮釋自己的照顧與生命經驗。本研究經過某醫學中心IRB審核與機構同意後開始研究，收案時間為2013年02-04月，受訪者來源來自某醫院中心、社區復健中心、康復之家、自助團體中的精障者健康手足，共12位。會談時間為一到兩個小時，全程錄音，事後分析逐字稿，進行概念化整理。 研究發現，受訪者會擔任受訪者的原因，係家庭系統的改變，九位受訪者是照顧責任的轉移，如父母照顧能量不足、過世，進而呈現「主動」或「被動」進入照顧系統中；有三位受訪者在生病手足生病開始，已經是照顧者的角色，依個人特質、長者手足與多手足進行主題討論。健康手足擔任照顧者的角色，其照顧經驗整理可分出三大類，提供生病手足就醫陪伴、生活照顧、心理感受，特別是配偶態度的影響甚大。最後邀請受訪者比較「父母照顧」與「手足照顧」經驗之差異。 精神障礙者手足照顧經驗有其特殊性，建議實務工作者可重視與傾聽手足的聲音，邀請手足加入照顧計畫或病情討論，尊重手足面對原生家庭與婚姻家庭中的選擇；建議政府單位或社福團體應重視不同族群的照顧者特性與需求，提供不一樣的服務與照顧，減輕手足照顧的壓力。Objective: In social work practice, parents, spouse and children usually are caregivers who care the mental illness clients. When the mental illness clients are aging and the family life cycles of theirs changing, the well siblings are the important role in the continuum care system when they being single, no child, and having parents with exhausted energy. Actually, there were few studies on the mental illness siblings’ caretaking experiences. Aim: This study is to understand how to discuss the caring role of well sibling in the family system, and to organize the well sibling caretaking experiences. Methods: This study is a qualitative research through “one on one” and depth interviews. To obtain the views of participants, they will narrate their caring and life experiences, and we further invite them to compare sibling caring and parent caring. After getting approval from IRB (Institutional Review Board) of the medical center, it stared the study. The study duration of cases collecting is from Feb. to Apr. 2013. The interviewees of 12 people are from local community hospitals, community rehabilitation centers, halfway houses and self-help group organization in Taiwan. After 1-2 hours of interviews the researchers conceptualized the interviews through recording and verbatim. Finding: The well siblings were caretakers because of changing family system. 9 participants explored the responsibility of caring illness siblings shifted from their parents, ex: the parents caring ability was losing, the parents died. 3 participants have been caretakers since the onset of their siblings’ illness. The sibling caring experience is divided three categories: providing medical care, caring daily life, and individual feeling, especially the attitude of well siblings’ spouses great impacted. Finally, the participants compared “parents caring experience” with “sibling caring experience”.

Result: It’s unusual to the mental illness siblings’ caring experiences, so the study suggested respecting and listening to the mental illness siblings’ voice in the social work practice. The study suggests to the institutions and government servicing the mental illness siblings’ need in order to reducing the caring burdens.