「為什麼只有我？」：智障者手足間的照顧者角色繼承的順從與對抗

Why Is It Only Me?”: Obedience and Confrontation When Adult Siblings Inherit the Family Caregiver Role

本研究以手足主要照顧者的觀點探討智障者家庭選擇特定手足繼承主要照顧責任的因素以及其因應策略。採深度訪談法，邀請 9 個家庭內的10 位智障者手足照顧者接受訪談。研究發現有二：第一，「父母欽點」和「手足間參與照顧機會的差距」兩者交互作用下，是手足主要照顧者的出線主因；此機會差距並非與生俱來，是父母與繼承者雙方長期緊密互動，排除或忽略其他手足之效應。第二，發現手足主要照顧者因應照顧責任有「多數順從、少數對抗、難得發聲」的行動樣態，部分手足主要照顧者會逐步培力個人資源與知能，挑戰父母與主流社會的期待，以扭轉照顧宿命。研究提出三項建議：（1）運用敘事取向的手足工作坊，回溯過往成長經驗，使其有機會重新詮釋與建構新經驗，促成改變，發展兼顧生涯規劃與照顧責任的因應策略；（2）引導每位家庭成員共同討論照顧計畫，避免單一繼承現象；（3）提前進行照顧轉銜規劃與支持服務，提供多元型態的照顧者服務體系。

This study explores the factors that influence families with intellectual disabilities in choosing specific siblings to inherit the main care responsibilities, as well as the coping strategies from the perspective of the main sibling caregiver. Using the in-depth interview method, we interviewed 10 sibling caregivers of patients with intellectual disabilities in nine families. The study has two main findings. First, the interaction of 'parents' appointment' and 'the gap in the opportunity to participate in care of siblings' is the main reason for the success of the main sibling caregivers. In other words, this gap in opportunity is not innate; it is the long-term close interaction between the parents and their heirs, excluding or ignoring the effects of other siblings. Second, the main sibling caregivers have three coping strategy patterns: most obedient, less confrontational, and rare voices. One of the main sibling caregivers gradually tries to develop their personal resources and knowledge and challenges parental and mainstream societal expectations in an attempt to influence their care fate. We propose three suggestions: First, service organizations can conduct narrative-oriented sibling workshops to help siblings to look back on growth experiences and develop coping strategies that take care of both career planning and care responsibilities, as well as to give them the opportunity to reinterpret and construct new experiences to promote change. Second, the government and organizations can create care arrangement guidelines for encouraging all family members to take part in discussing the intellectually disabled sibling’s care plans together and joining the care arrangement, in order to avoid the single inheritance situation. Finally, provide a multivariate caregiver support service program and carry out care transfer planning and support services in advance.