School of Applied Social Studies, University College Cork, Ireland.
Soc Sci Med. 2019 Jun;230:264-270. doi: 10.1016/j.socscimed.2019.04.022. Epub 2019 Apr 19.
Extended longevity among adults with Intellectual Disabilities (ID) and increasing rates of diagnosis of Autism Spectrum Disorders (ASD) mean that parents are unlikely to remain primary carers throughout the lifecourse of adults with ID and ASD. In the context of decreased funding for disability services and policy moves toward de-congregated living, non-disabled (ND) siblings of people with ID/ASD are increasingly likely to be drawn into support and care roles for their siblings. Drawing on literature on moral emotions and the ethics of care, and on narratives collected from 25 ND siblings in Ireland in 2015/6, this paper explores the emotional dynamics entwined in the care and support roles ND siblings engage in. Findings indicate that relationships forged in childhood underpinned the moral ethic to care exhibited by many participants and that their caregiving was experienced as moral practice and emotional engagement, shaped by and constitutive of biography and moral identity. When making care choices, siblings undertook evaluative judgement of their own behaviours, which was informed by perceptions about obligations to care and about what constitutes good care. Decisions about care had emotional resonance, with guilt, other-oriented empathy and righteous-anger emerging as the key emotions in the narratives. Dilemmas between autonomy and relatedness caused siblings to grapple with feelings of resentment and guilt, and many struggled to exercise self-compassion in the face of perceived moral failings. Others experienced conflict characterised by a struggle to reconcile competing care and nurturing expectations within their intimate relationships. Through ongoing self-evaluation of their care behaviours siblings' moral identities were continually reconstituted. It is imperative that service providers and professionals understand and acknowledge such moral and emotional dynamics when working with people with ID/ASD and their families.
患有智力障碍 (ID) 的成年人的预期寿命延长，自闭症谱系障碍 (ASD) 的诊断率不断上升，这意味着父母不太可能在 ID 和 ASD 成年患者的整个生命周期中一直担任主要照顾者。在残疾服务资金减少和政策向非集中居住转变的背景下，智障人士/ASD 人士的非残疾 (ND) 兄弟姐妹越来越有可能被纳入对其兄弟姐妹的支持和照顾角色中。本文借鉴了关于道德情感和关怀伦理的文献，以及 2015/6 年在爱尔兰从 25 名 ND 兄弟姐妹那里收集的叙述，探讨了 ND 兄弟姐妹所承担的照顾和支持角色中交织的情感动态。研究结果表明，许多参与者表现出的关怀道德伦理源于童年时期建立的关系，他们的照顾行为被视为道德实践和情感投入，受到传记和道德身份的塑造和构成。在做出照顾选择时，兄弟姐妹会对自己的行为进行评价性判断，这是基于对照顾义务的看法和什么是良好照顾的看法。照顾决策具有情感共鸣，内疚、他人导向的同理心和正义愤怒成为叙述中的关键情感。自主性和相关性之间的困境使兄弟姐妹陷入怨恨和内疚的情绪中，许多人在面对所谓的道德失败时难以自我同情。其他人则经历了冲突，他们在亲密关系中努力调和相互竞争的照顾和培养期望。通过对自己照顾行为的持续自我评估，兄弟姐妹的道德身份不断得到重塑。服务提供者和专业人员在与 ID/ASD 患者及其家庭合作时，理解和承认这种道德和情感动态至关重要。
