跨越時間的守護者: 擔負障礙者照顧責任的手足生命階段與世代間異同探究

Sibling relationship is considered the longest-lasting family tie; this tie becomes more important when one sibling has a disability and requires on-going support, especially in an era while Taiwan has become an aged society. Past literature has shown that while non-disabled siblings reported satisfactory well-beings when they received emotional and informational supports; lack of supports and discussion within the family could lead to undesirable outcomes for siblings. However, influence of changes in caregiver life stages, demographics (e.g., family structure, family relationships), societal values on sibling relationships and sibling caregivers’ experiences remain unclear. Therefore, this study aims to explore similarities and differences among of sibling caregivers of adults with intellectual disability and autism across life stages and generations. To first explore current condition and subsequently expand the findings, the primary investigator (PI) adopted a two-phase sequential exploratory mixed-methods design. This study focuses on Phase I of the study. In Phase I, the PI conducted in-depth interview with 30 sibling caregivers of adults with intellectual disability and autism age 20-66 who resided in Northern Taiwan. The PI analyzed verbatim interview transcripts with phenomenological approach. In this study, the PI examined how siblings reflected upon their experiences during three different caregiver lifestages (i.e., minimal, anticipating and joint/primary caregiver roles). In the first stage, the participants took on a minimal caregiver role and reported having ambivalent relationships that they understood better as they grew older. In the second stage, the participants followed their parents’ plan for an anticipating caregiver role but they were sometimes unraveled by the ambiguity due to lack of discussion. In the third stage participants become joint caregivers, sometimes struggling to keep up with their mothers’ expectation because they’re very used to the good kids roll in the family. They never fully transitioned to the primary caregiver role until the mother passed away. Next, the PI compared their perspectives between two generations (i.e., traditional and contemporary). The major difference between those two generations lied in how members perceived caregiving responsibilities. As compared to the traditional generation, the contemporary generation is more likely to establish a clear boundary at an earlier age and more likely to engage in negotiation with parents about their roles. Findings in this study suggested that that the non-disabled siblings would participate in caregiving, although the forms of participation may be different. The PI discovered three key points which warrant further discussion: a) predictable trajectories for non-disabled siblings and their caregiving roles, b) the highly cohesive family system in Taiwanese society, and c) potential generational differences in caregiving. Based on the discussion, the PI suggested future researchers, practitioners and policymakers to recognize non-disabled siblings as an active participant in family support, and this support shall not be contingent upon caregiving.