ABSTRACT

Providing long-term care for a family member diagnosed with a Prolonged Disorder of Consciousness (PDoC) can have a significant impact on the lives of family caregivers. This scoping review aimed to explore the current literature investigating the impact of caring for a person in a PDoC on family caregivers’ Quality of Life (QOL), as categorized using the WHOQOL-BREF model. We observed that articles employing quantitative methodologies mostly reported QOL outcomes relating to negative feelings, thinking, learning, memory and concentration, and personal relationships. Articles employing qualitative methodologies mostly reported QOL outcomes relating to negative feelings, personal relationships, positive feelings, and health and social care accessibility and quality. A descriptive content analysis of the QOL outcomes highlighted the limitations of the current literature base in representing the complexities of the experiences of family members providing care for a person in a PDoC. To provide valuable and personalized support to caregivers, without pathologizing or medicalizing their distress, it is vital to characterize more accurately the contextual subtleties of each person’s situation.

摘要

为被诊断患有长期意识障碍 (PDoC) 的家庭成员提供长期护理可能会对家庭护理人员的生活产生重大影响。该范围审查旨在探索当前文献调查在 PDoC 中照顾一个人对家庭照顾者生活质量 (QOL) 的影响，使用 WHOQOL-BREF 模型进行分类。我们观察到，采用定量方法的文章大多报告了与负面情绪、思维、学习、记忆和注意力以及人际关系有关的 QOL 结果。采用定性方法的文章大多报告了与负面情绪、人际关系、积极情绪以及健康和社会护理可及性和质量相关的生活质量结果。对生活质量结果的描述性内容分析强调了当前文献库在代表家庭成员在 PDoC 中为一个人提供护理的经历的复杂性方面的局限性。为了向护理人员提供有价值和个性化的支持，而不将他们的痛苦病态化或医学化，更准确地描述每个人情况的上下文微妙之处至关重要。