Non-kin caregivers of terminally ill people: Contributions, experiences, and needs (NOCA)

绝症患者的非亲属护理人员：贡献、经验和需求 (NOCA)

• 批准号: 528683214
• 负责人: Dr. Maria Heckel
• 金额: --
• 依托单位: Institut für Allgemeinmedizin und Palliativmedizin
• 依托单位国家: 德国
• 项目类别: Research Grants
• 资助国家: 德国
• 项目状态: 未结题
• 来源: https://gepris.dfg.de/gepris/projekt/528683214?language=en
• 关键词: Non; kin; caregivers; terminally; ill

Neighbours and friends provide extensive care for individuals in end-of-life situations, in addition to or instead of family members. However, the literature contains little evidence of the experiences, burdens, and benefits of non-kin caregivers. Added to this, non-kin caregivers (e.g. acquaintances, friends, neighbours) are not significantly addressed within political discourse or informational events. The proposed project aims at investigating the extent to which non-kin caregivers contribute to the care of individuals at the end of life. What are the experiences of these non-kin caregivers? What burdens and benefits arise from non-kin caregiving? What are the support needs and wishes of non-kin caregivers? In a first step, we will ask non-kin caregivers about their burdens, benefits, psychological well-being, and needs, by means of a questionnaire. We will also use the questionnaire to explore the extent and type of care they provide and socio-demographic data. In a second step, we will conduct in-depth interviews with a diverse group of individuals in terms of age, gender, origin, educational level, and employment status. Non-kin caregivers will provide information about their caring activities, motivations, and needs. We will use the findings to develop a framework that outlines the specifics of the non-kin caregiving situation at the end of life. The framework is expected to guide the development of support measures for non-kin caregivers and reveal new and valuable research directions.

除了家庭成员之外，邻居和朋友还为临终时的个人提供广泛的照顾。然而，文献中几乎没有关于非亲属照顾者的经历、负担和好处的证据。除此之外，非亲属照顾者(如熟人、朋友、邻居)在政治话语或信息事件中没有得到很大的重视。拟议的项目旨在调查非亲属照顾者在生命末期对个人护理的贡献程度。这些非亲属照顾者的经历是什么？非亲属照看会带来什么负担和好处？非亲属照顾者的支持需要和意愿是什么？在第一步，我们将通过问卷的方式询问非亲属照顾者的负担、福利、心理健康和需求。我们还将使用问卷来探索他们提供的护理的范围和类型以及社会人口数据。在第二步，我们将就年龄、性别、出身、教育水平和就业状况对不同群体的个人进行深入访谈。非亲属照顾者将提供有关他们的关怀活动、动机和需求的信息。我们将利用这些发现来开发一个框架，概述生命结束时非亲属照料情况的具体情况。预计该框架将指导制定对非亲属照顾者的支持措施，并揭示新的有价值的研究方向。