The Brain and Mind Institute, Western University, London, Ontario, Canada.
Toronto Rehabilitation Institute - University Health Network.
Brain Inj. 2021 Jan 18;35(2):200-208. doi: 10.1080/02699052.2020.1865565. Epub 2021 Jan 1.
: To understand the multiple and sometimes conflicting roles substitute decision makers (SDMs) of individuals in a vegetative state (VS), minimally conscious state (MCS), or with locked-in syndrome (LIS) perform while caring for a loved one and the competing priorities derived from these roles.: We conducted semi-structured qualitative interviews using a constructive-grounded theory design. Twelve SDMs, who were also family members for 11 patients, were interviewed at two time points (except one) for a total of 21 in-depth interviews.: Participants described that caregiving is often the central role which they identify as their top priority and around which they coordinate and to some extent subordinate their other roles. In addition to caregiving, they participated in a wide variety of roles, which were sometimes in conflict, as they became caregivers for a loved one with chronic and complex needs. SDMs described the caregiver role as complex and intense that lead to physical, emotional, social, and economic burdens.: SDMs report high levels of burdens in caring for a person with a prolonged disorder of consciousness. Lack of health system support that recognized the broader context of SDMs lives, including their multiple competing priorities, was a major contributing factor.
为了理解处于植物人状态（VS）、最小意识状态（MCS）或闭锁综合征（LIS）的个体的替代决策人（SDM）在照顾亲人时所扮演的多重角色，有时这些角色之间还存在冲突，以及这些角色衍生出的相互竞争的优先级：我们采用建构主义扎根理论设计进行了半结构化定性访谈。共有 12 名 SDM 接受了访谈，其中 11 名为患者的家属，除 1 人外，他们在两个时间点接受了访谈，共进行了 21 次深入访谈。：参与者描述说，照顾亲人通常是他们的首要任务，也是他们协调和在一定程度上服从其他角色的核心角色。除了照顾亲人之外，他们还参与了各种各样的角色，这些角色有时会相互冲突，因为他们要照顾一个患有慢性和复杂疾病的亲人。SDM 们将照顾者的角色描述为复杂和紧张的，这会给他们带来身体、情感、社交和经济方面的负担。：SDM 们报告说，在照顾患有长期意识障碍的人方面，他们承受着巨大的负担。缺乏卫生系统的支持，未能认识到 SDM 们生活的更广泛背景，包括他们相互竞争的优先级，这是一个主要的促成因素。
