「甜蜜的負荷」？家庭對於中高齡智障家人的照顧轉銜

Abstract

智障者的家庭照顧是個普遍的社會情況，不過近來隨著高齡化時代的到來，智障者存活到老年的機率越來越高，也相對影響原先扮演主要照顧者的父母的照顧歷程無限期的往後延伸，形成典型的「老年父母照顧中高齡智障子女」的家庭狀況，但父母照顧總有終止的一天，當其無法繼續照顧時，家庭必須因應智障家人的照顧轉銜。回顧過去研究可以發現，我國對於此類中高齡智障者家庭的研究並不多，而相較下國外相關的研究雖較為豐碩，但多以橫斷性研究切入只關注家庭晚期的階段，忽視近乎終生照顧的家庭照顧經驗，對於智障家人照顧轉銜的影響。此外，每個社會成員都會因為個人生命故事和外在環境影響而有不同的生命歷程發展，中高齡智障者家庭對於智障家人的照顧轉銜經驗是必須被呈現出來的。因此本研究希望從中高齡智障者家庭的角度切入，探究家庭對於智障家人照顧轉銜的考量和安排，期望透過研究達成以下目的（1）描繪中高齡智障者家庭的長期照顧歷程；（2）瞭解家庭對於智障家人未來照顧安排的討論過程與心路歷程；（3）瞭解正式與非正式資源對中高齡智障者家庭的協助；（3）依據上述結果提出對於中高齡智障者家庭服務的建議。 本研究採取質性深度訪談，從智障者的老年父母照顧者的角度切入，了解其家人對於智障子女未來照顧的安排和討論。在2007年夏天進行田野訪談，透過正式和非正式管道獲得10個受訪家庭。和受訪者一同回顧智障家人的出生、就學、就業、婚姻等經驗，以及長期照顧歷程和未來照顧安排。研究結果分析以「生命歷程」作為主軸，將訪談結果分為過去轉銜和照顧經驗、現在照顧情形以及未來照顧安排的發展。研究分析分為四節討論，第一節描述十個智障者家庭照顧的故事，第二節則就生命歷程軸線的深入描寫，第三節進入討論中高齡智障者家庭的照顧情形，最後一節則為智障家人未來照顧安排的討論。 研究發現，中高齡智障者出生於1940-50年代，障礙者被接納情形不高、福利服務不普及的。因此該世代的智障者是否經歷照顧轉銜，和他們本身的障礙程度，以及環境是否可以提供支持有關，並非所有的智障者都可以經歷多元的照顧轉銜，依據受訪者描繪智障家人的轉銜經驗可以分為「從未離家型」、「淺嘗人生型」與「較多經歷型」三種類型。在中高齡智障者家庭照顧情形可以發現，家庭隨著老年父母的老化，其照顧能量是逐漸燃燒殆盡的，智障子女的照顧負擔一直在磨損、適應的來回反覆。且就如過去研究指出照顧女性化的情形，智障者的照顧多由母親來負責，但這些老年母親和智障子女相依為命的家庭，又會因為年長、貧窮等導致生活品質的低落，而處於岌岌可危的狀況。而這些老年父母對於智障子女是一種放不下的擔心，不過照顧負荷的沉重下又因對於正式體系的不信任、不熟悉或誤解而較少使用服務，使得這類家庭隱藏在福利體系之外，除了讓家庭處於危機，正式體系也因未察覺這類家庭而必須在未來緊急接手這個為數龐大但卻一直存在的燙手山芋。而對於智障家人的照顧安排，依據受訪者的情形可以分為「且戰且走型」、「矛盾無解型」、「單方託付型」、「主動承接型」和「準備就緒型」，每個家庭對於智障家人的照顧轉銜有著不同的因應，且受到過去照顧或轉銜經驗的影響，有些家庭選擇消極面對，有些則採取積極的包括和家人的討論、機構安置、財務準備等行動回應。 依據研究結果，本研究提出幾個建議：（1）政府應擔負起中高齡智障者的照顧，將家庭照顧成本社會化，透過積極的事先預防來發掘這類潛藏於社會的弱勢家庭，透過社區外展或是透過和社區非正式網絡合作媒介有需求的家庭，並裝備正式體系承接中高齡智障者的因應能力。（2）政府應對於作為照顧資源家庭的支持，提供智障者和照顧者妥當的服務，除避免家庭因為缺乏完善保障而被遭遇社會排除，也須協助家庭在「心理準備」和「照顧安排」兩層面協助家庭對於智障家人的未來照顧轉銜。

It is a common social phenomenon that families take care of family members with intellectual disability. In this aging society, life expectancy of people with ID became lengthen. That leads to a longer timeframe for caregivers to take care of them. There comes a special family condition that elderly parents take care of their aging intellectual disabled children. These elderly parents, however, will not be able to take care of them some day. Therefore, the family have to consider care transition for members with ID. In this study, researcher will explore these families’ attitude and concern toward care transition. The primary research goals are: (1) to delineate the long-term care process of families with aging members with ID. (2) to understand the internal process for families in the discussion of care transition for aging members with ID. (3) to show the influence of formal and informal resources on families with aging members with ID. (4) to offer suggestions for families according to the findings mentioned above. Qualitative research approach was employed in the study. Deep interviews with ten families had started between July to September 2007. Information how family worked together to arrange future care for individuals with ID was collected. In terms of life course, data were categorized as “the past”, “the present” and “the future.” The results indicated that aging people with ID born in 1940s has cohort different. Not each of them exactly experienced integrated diverse care transitions. Some were stayed at home most of their life, and even haven’t left family to receive any formal education or vocational training. With the research experience of long-term care, researcher found the caring energy in the family have become lower and lower when elderly parent’s aging. It is especially notable in families of old single mother. Their life quality was strongly affected by factors as low socio-economic status and aging. Although these old parents wish to alleviate caring burdens, they refused to accept help from social service agency due to distrust and unfamiliarity. This resulted in crisis not only for the family but also the whole social service system. Regarding ways of arranging future placement for members with ID, researcher categorized mainly five types from results. Each type showed different coping styles. Some families choose passive resistance to get rid of the painful and sorrowful arrangement, others begin the discussion with others family members, use out of home placement, or financial plan. Last, according to the result, researcher indicated some suggestion to government about social welfare policy.