遇見後天家人:參與支持團體的心智障礙者成年一般手足之壓力調適探究

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2020

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在高齡化社會中,心智障礙者的平均年齡增加,需要家人照顧的年限也隨之增長;成年一般手足(以下稱一般手足)成為分擔與承接照顧責任的首要候選人同時亦需要支持。美日文獻顯示一般手足在同儕支持之下能有夠好的適應成果,而國內據此也開始為成年一般手足辦理支持方案。研究者為了進一步了解一般手足的經驗,加入財團法人育成福利基金會所舉辦的成年一般手足支持團體進行觀察及訪談。在研究期間參與支持團體活動的一般手足共有41名,其中有30名加入即時通訊群組進行線上互動,多數參與的一般手足仍為偕同照顧者,並未擔負起心智障礙者完全的照顧責任。研究者在徵得一般手足同意後透過實地觀察支持團體的進行、閱讀成員通訊群組對話、以及深度訪談六位一般手足進行質性研究的資料蒐集以及分析。本研究奠基於ABC-X理論,聚焦於檢視參與支持方案之心智障礙者成年一般手足生活上的壓力事件、獲得資源,及適應結果與觀點,本研究主要發現如下: 1.本研究的參與者所感知的壓力、團體提供的資源,以及參與後的適應結果三者之間會互相影響。參與者也隨之改變自我對於壓力、獲得的資源以及適應結果的看法。 本次研究中的參與者,因為在團體中所獲得的資源,而影響其對於原先壓力的觀點。例如:在團體中看見其他成員的改善,受到啟示或鼓勵,感受到希望,調整自己原先對於壓力的觀點,達成較為良好的適應結果。感受到好的適應結果後,參與者也會回饋至團體中,少數的參與者表達後續願意擔任團體領導者的意願。 2.本研究的參與者,多扮演偕同照顧者的角色,因此其主要壓力並不是來自於直接照顧責任,而是與其他家人的溝通,以及外界的眼光。 對於仍擔任偕同照顧者的一般手足而言,直接照顧責任並不是他們最大的壓力來源;相對於此,與其他家人在責任分配上的溝通,以及外界對障礙的看法,反而為他們帶來較大的壓力。長期下來一般手足獨自面對生活中的壓力事件,讓一般手足感到孤單及無助,時常面臨許多兩難的局面,而感到無奈和困惑。 3.本研究參與者期待獲得專屬與一般手足的資源,每一個人仍有不同的個別需求。 一般手足長期以來都期待有一個屬於自己的團體。他們認為一般手足與父母的需求是不同的,父母會將智能障礙者安置於家中,照顧到直到自己無法照顧的時候,而一般手足則希望能保有自己的生活,傾向協助心智障礙者做機構安置規劃。此外,一般手足與父母處於不同的照顧以及生命階段,因此不能以對父母的方式套用在一般手足身上。支持團體提供資訊支持及情緒支持,而大部分參與者也表示在團體中找到歸屬感,終於感覺自己不再是個局外人。其次,參與者們也從他人的經驗中學習,讓自己少走一些冤枉路。 4.本研究的參與者在參加團體之後,多數人產生正向的改變,但每個人的改變的程度不同,有些人開始關注自己的需求,有些人則由被支持者漸漸轉為支持者。 參與者認為要先照顧好自己,才能照顧別人,開始多花一點時間照顧自己,也意識到下一個階段的挑戰及解決策略,並開始計畫著手準備。甚至少數的參與者,從被支持者轉為支持者,願意在下一年度的支持團體中擔任帶領者。 並於最後建議在實務工作上,專業人員在與心智障礙者家庭工作時,要意識到父母與手足處於不同照顧階段,也要尊重一般手足間的差異。在未來研究上,建議欲從事一般手足相關研究者,可嘗試以參與式行動研究或個案研究的方式,進行更長時間的觀察。
As life expectancy increases for all in an ageing society in Taiwan, family caregiving for individuals with intellectual and developmental disabilities would be expanded. Adult typical-developing siblings (hereafter referred to as siblings need support to become the anticipating primary caregiver of their brother/sister with disabilities. Studies conducted in the U.S. and Japan confirmed that when adequately supported by peers, siblings can achieve derisible outcomes. To investigate experiences of siblings in peer support groups, the researcher participated in developing a sibling support program organized by Yu-Cheng Social Welfare Foundation. During the course of six months, a total of 41 siblings participated in face-to-face workshops, in which 30 of them joined an instant messaging group. Most of the siblings remained assisting their parents (i.e., the primary caregivers) in caregiving. Upon all siblings’ consents, the researcher collected qualitative data through observing the face-to-face sessions, documenting the chat in the exclusive instant messaging group, and interviewing six of the sibling participants. Grounded in the ABC-X theory, the researcher focused on examining participants’ perspectives toward the stressors, the resources obtained, and the outcomes. The main findings of this survey are as follows: 1.The life stressors, resources from the peer support group (i.e., face-to-face workshop and instant messaging group) and coping outcomes were all shaped by subjective perceptions, and all three interacted with each other. 2.The primary stressors were (a) communication with other family members on caregiving responsibilities distribution and (b) societal perspective toward disability, instead of the caregiving tasks. 3.In terms of resources through the peer support group, participants expressed desire of having a group of their own, not be a part of a parent group. Peer support provides siblings information and emotional support. After participating in the support group, most of the participants also expressed a sense of belonging and that they were not alone. However, siblings have diverse needs. 4.Most participants showed positive coping outcomes after participating in the peer support group and recognized how important it was to prioritize self-care. Moreover, some participants have stepped to become a leader in the group. In sum, siblings can obtain necessary support and changed their perspective toward stressor and roles through a peer support group. Practitioners ought to acknowledge siblings unique needs as a group and an individual. Future researchers may further inquire siblings’ coping strategies and outcomes with longitudinal data.

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成年一般手足, 心智障礙者, 支持團體, 壓力調適, adult siblings, intellectual and developmental disabilities, support group, stress and coping

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