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.

根据联合国《残疾人权利公约》(CRPD)，在不断努力使精神疾病患者成为独立决策者的时代，家庭成员充当人们的替代决策者 (SDM)在包括加拿大在内的世界许多地方，患有致残性严重精神疾病 (SMI) 的患者仍然是精神病治疗医疗法律体系中不可或缺的一部分；然而他们的经历和观点很少被研究。这项探索性定性研究考察了加拿大多伦多 14 名 SDM 家庭成员的生活经历和反思。出现了与 SDM 相关的五个关键主题：1) 对 SDM 角色的责任和权限的不同主观理解；2）不同的角色需求和对SDMs生活的影响；3) 应对心理健康系统的挑战；4) 利用决策地位促进患者护理；和 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，承认他们的价值和看护者的负担，为他们的参与找到平衡，以及加强他们对加强患者护理的支持。