ABSTRACT

Primary Objective: To understand the experiences of family members of individuals in a locked-in state (LIS), minimally conscious state (MCS), or vegetative state (VS) with the health-care system when caring for their family member.

Research Design: The study adopted a qualitative descriptive approach drawing on central tenets of constructivist grounded theory described by Charmaz. Our analysis drew on emphasizing connections between theory, concepts, and empirical data using a constant comparative method.

Methods and Procedures: Semi-structured interviews were conducted with family members of individuals in a LIS, MCS, or VS. Participants were recruited between June 2014 and December 2016.

Main Outcomes and Results: 22 interviews were conducted, which comprised interviews with 12 family members. The following themes were identified: care coordination challenges, lack of flexibility in health-care policies, and inappropriate care settings.

Conclusions: Family members of individuals in a LIS, MCS, or VS described playing a significant role in the lives of their family member. Based on the results of this study, flexibility in health-care policies and/or programming should be adopted in the face of the challenges identified. Implementation of interventions to support caregivers and transitions is increasingly important.

摘要

主要目的：了解处于锁定状态 (LIS)、最低意识状态 (MCS) 或植物人状态 (VS) 的个人的家庭成员在照顾家人时在医疗保健系统中的经历。

研究设计：该研究采用了定性描述方法，借鉴了 Charmaz 描述的建构主义扎根理论的核心原则。我们的分析利用不断比较的方法强调理论、概念和经验数据之间的联系。

方法和程序：在 LIS、MCS 或 VS 中对个人的家庭成员进行半结构化访谈。参与者是在 2014 年 6 月至 2016 年 12 月期间招募的。

主要结果和结果：进行了 22 次访谈，其中包括对 12 名家庭成员的访谈。确定了以下主题：护理协调挑战、卫生保健政策缺乏灵活性以及不适当的护理环境。

结论：LIS、MCS 或 VS 中个人的家庭成员描述在其家庭成员的生活中发挥重要作用。根据这项研究的结果，面对已确定的挑战，应在医疗保健政策和/或规划方面采取灵活性。实施干预措施以支持护理人员和过渡变得越来越重要。