The multiplicity of caregiving burden: a qualitative analysis of families with prolonged disorders of consciousness
The multiplicity of caregiving burden: a qualitative analysis of families with prolonged disorders of consciousness
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DOI：
10.1080/02699052.2020.1865565
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发表时间：
2020-12-31
期刊：
影响因子：
1.9
通讯作者：
Webster, Fiona
中科院分区：
文献类型：
--
作者：
Gonzalez-Lara, Laura E.;Munce, Sarah;Webster, Fiona
目的：要了解多种，有时是相互冲突的角色替代决策者（SDM）的个人在植物人状态（VS），最低意识状态（MCS），或闭锁综合征（LIS）执行，而照顾一个心爱的人和竞争的优先事项，从这些roles.Methods：我们进行了半结构化的定性访谈，使用一个建设性的接地理论设计。十二SDM，谁也是11例患者的家庭成员，接受了采访，在两个时间点（除了一个），共21个在深度interviews.Results：参与者表示，adverving往往是他们确定为他们的首要任务，并围绕他们的协调，并在一定程度上从属于他们的其他角色的中心作用。除了照顾之外，他们还扮演各种各样的角色，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顾者。SDMs描述的照顾者的角色复杂和激烈的，导致身体，情感，社会和经济burners.Conclusion：SDMs报告高水平的负担，在照顾一个人的长期意识障碍。一个主要的促成因素是，卫生系统缺乏支持，而这种支持认识到可持续发展机制生活的更广泛背景，包括其多重相互竞争的优先事项。
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.