ABSTRACT

Objective: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

摘要

目标：了解处于植物人状态 (VS)、最低意识状态 (MCS) 或锁定综合征 (LIS) 的个人的替代决策者 (SDM) 在照顾亲人和来自这些角色的相互竞争的优先事项。

方法：我们使用建设性的理论设计进行了半结构化的定性访谈。12 名 SDM 也是 11 名患者的家属，在两个时间点（一个除外）接受了采访，共进行了 21 次深度采访。

结果：参与者描述了照料通常是他们认为最重要的中心角色，他们围绕这个角色进行协调，并在某种程度上从属于他们的其他角色。除了照料之外，他们还扮演着各种各样的角色，这些角色有时会发生冲突，因为他们成为有长期和复杂需求的亲人的照料者。SDM 将看护者的角色描述为复杂而紧张的，会导致身体、情感、社会和经济负担。

结论：SDM 报告称，在照顾长期意识障碍患者方面的负担很高。缺乏承认 SDM 生活更广泛背景的卫生系统支持，包括他们多个相互竞争的优先事项，是一个主要的促成因素。