| 摘要: | 從2015年5月20日修正頒布〈身心障礙者家庭照顧者服務辦法〉來看，家庭照顧者係指身心障礙者家庭內最主要照顧身心障礙者之配偶、直系血親、直系姻親或共同生活之家屬。當中很難看出手足照顧者的身影，且加上從過去到近年來的雙重老化照顧議題，擔任智障者的照顧者通常以父母為主，因此福利政策與學術研究較側重於父母與智障者的雙重照顧負擔。然而，在雙重老化照顧責任代間移轉影響下，手足是最有可能繼父母後的潛在照顧者，但卻往往被正式與非正式支持資源所忽略的照顧者。據此，本研究旨在探討當家庭不只1位手足時，為何由其中1位手足承接主要照顧角色，他們是如何詮釋自己終身會面對的照顧責任，以及又怎麼看待與其餘手足、父母之間的照顧協議內容。
本研究採質性訪問法，選取10個家庭內的11位智障者手足照顧者為研究對象，並以主題式分析法進行資料分析。歸結三個主題發現：一、我不是自私的照顧者！二、誰是合適的「接班人」？三、手足如何因應生命歷程下的照顧責任？手足至童年期開始，即要被迫或接受承擔部分的照顧者角色，致使從小的內心世界總充斥著各種衝突與困惑，無法訴說，這難以招架的照顧牢籠，深深影響後續各階段的生涯抉擇；再者，在體諒父母照顧辛勞的前提下，手足無意識地犧牲自身成就或被迫長大，甚至缺乏其餘手足的討論和陪伴，更加深孤立無援的照顧處境，因此選擇「自圓其說」的方式或累積社會支持資源，讓自己有正當的理由面對孤獨的照顧生涯，但同時也深刻描繪出多手足間不平衡與無措的特殊圖像。
依據研究發現，建議實務工作者與父母先深度傾聽手足的內在心聲與衝擊，以及推動多元型態的支持團體，達到心理紓壓的效果，並提供生涯規劃的討論與智障者教養技巧的資訊，發展屬於手足的照顧因應策略；再者，創造跟引導手足間彼此溝通與討論的機會，避免長期照顧責任落入一人手中。最後，建議長期照顧政策規劃者正視雙重老化照顧轉銜的連續性需求，並重新檢視智障者照顧圖像的想像，建立起合宜的照顧服務模式與計畫。
From the promulgation of the " Family and caregiver services for people with disabilities " amended and dated May 20, 2015, the major In-home caretaker is the spouse, immediate family members, straight in-laws members and family members who live together under the same roof.
It is difficult to see the presence of caretakers from siblings. Moreover, the dual-aging care issues from the past to recent years, the parents who are commonly to take the responsibility of looking after the mentally-impaired persons. Therefore, welfare policies and academic research are more focused on the Double care burden of parents and intellectual disabilities. However, under the influence of the intergenerational transfer of dual aging care responsibility, siblings are the most likely the potential caregivers instead of the parents, but are often the overlooked caretakers by both formal and informal supporting resources.
Based on this, the purpose of this study is to explore why when one family is more than one siblings, why does one take over the role of caretaker. How do they interpret the care responsibilities they will encounter throughout their lives? And how do they regard the content of the negotiation of the care responsibilities between the parents and other siblings.
In this study, the qualitative access method was used to select eleven handicapped caregivers from 10 families with intellectual disabilities as the research object, and the data analysis was conducted by using the topical analysis method.
It comes down to three themes: First, I am not a selfish caretaker! Second, Who is the right 「successor」？Third, how do siblings take care of the responsibility of the life process? From the beginning of childhood has already been forced to or accepted the responsibility as part of the caretaker, causing confusion and conflicts to their mind. Without sharing the inner thoughts, it is difficult to take on the burden of being a caretaker. This further influences the person in every phase in life when it comes to decision making. In addition, under the premise of being considerate of parents of the hardship of taking care work, we have no intention of sacrificing our own achievements or being forced to grow up. We even lack the discussion and companionship of the rest of our siblings, and are consequently becoming more deeply isolated and helpless. Therefore, we choose to "justify ourselves". By accumulating social support resources, they have the right reasons to face a lonely care career, but at the same time it also profoundly depicts the phenomenal images of imbalances and unpreparedness between those siblings.
Based on the findings, it is recommended that practitioners and parents listen to the inner voice and impact of siblings deeply, and promote multi-type support groups to achieve psychological relief, and provide information on career planning discussions and mental retardation skills. The development of a coping and care strategy that belongs to brothers and sisters; and, in addition, creating and guiding the opportunities for communication and discussion between brothers and sisters, and avoiding the responsibility for long-term care to fall into the hands of one person.
Finally, it is recommended that the long-term care policy planners face up to the continuous demand for double aging care and change the title, and re-examine the imagination of mentally disabled persons to take care of the images and establish an appropriate care service model and plan. |
