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“每个人都出于好意,但真正能为所爱之人挺身而出的人只有一个”——照顾患有严重精神疾病的亲人的替代决策者的经验和看法。

"Everyone means well but the one person who's really going to go to bat" - experiences and perspectives of substitute decision makers in caring for their loved ones with serious mental illness.

机构信息

Department of Psychiatry, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada; MAP Centre for Urban Health Solutions, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, Ontario, Canada; Department of Psychiatry, St. Michael's Hospital, Unity Health Toronto, Ontario, Canada.

Department of Psychiatry, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada; Centre for Addictions and Mental Health, Toronto, Ontario, Canada.

出版信息

Int J Law Psychiatry. 2023 May-Jun;88:101873. doi: 10.1016/j.ijlp.2023.101873. Epub 2023 Mar 20.

Abstract

In the era of on-going efforts to empower persons with mental illness to be independent decision makers as informed by the United Nations' Convention on the Rights of Persons with Disability (CRPD), family members acting as substitute decision makers (SDM) for people suffering from disabling serious mental illness (SMI) remain an integral part of the medical-legal system in psychiatric care in many parts of the world, including Canada; yet their experiences and perspectives are rarely studied. This explorative qualitative study examines the lived experiences and reflections of 14 family member SDMs in Toronto, Canada. Five key themes related to being SDM emerged: 1) Varied subjective understanding of the responsibility and authority of the SDM role; 2) Varied role demands and impact on SDMs' lives; 3) Challenges in dealing with the mental health system; 4) Leveraging decision making status to promote patient care; and 5) SDM role impact on family relationships. The need to improve SDM understanding of their role, acknowledging their value and care-taker burden, finding a balance for their involvement, and improving their support in efforts to enhance care for the patients are discussed.

摘要

在联合国《残疾人权利公约》(CRPD)推动精神疾病患者成为知情自主决策者的时代,在包括加拿大在内的世界许多地区,作为患有致残性严重精神疾病(SMI)患者的替代决策者(SDM)的家庭成员仍然是精神卫生医疗法律体系的一个组成部分;然而,他们的经验和观点很少得到研究。本探索性定性研究考察了加拿大多伦多 14 名家庭成员 SDM 的生活经历和反思。出现了五个与作为 SDM 相关的关键主题:1)对 SDM 角色责任和权力的主观理解各不相同;2)角色需求的多样性以及对 SDM 生活的影响;3)应对精神卫生系统的挑战;4)利用决策地位促进患者护理;以及 5)SDM 角色对家庭关系的影响。讨论了需要提高 SDM 对其角色的理解,承认他们的价值和照顾者负担,为他们的参与找到平衡,并改善他们在努力增强患者护理方面的支持。

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