背景:非亲属照顾者的角色,比如朋友,邻居,和熟人,在提供临终关怀方面意义重大,但在研究和政策讨论中往往被忽视。这些护理人员为临终关怀的个人提供广泛的支持,除了或代替家庭成员。然而,文献中关于这些经历的证据有限,负担,和非亲属照顾者的好处。
目的:这项研究的目的是研究非亲属护理人员在临终关怀中的作用和贡献。这项研究旨在揭示他们的经历,相关挑战,好处,和支持要求。
方法:为了实现这一目标,将采用混合方法,通过约150名非亲属护理人员的结构化问卷和多达25名参与者的深度访谈收集数据。问卷将衡量影响,负担,和照顾的好处。家庭照顾者的负担量表,作为照顾者规模的好处,家庭需求清单,积极心理健康量表,a图形接近度,和选定项目的Eurofamcare共同评估工具的社会人口和护理相关数据将被使用。将使用IBMSPSSStatistics28对定量数据进行分析,以进行描述性分析和分组比较。定性深入访谈的目的是全面了解个人经历,非亲属护理人员队列成员的动机和支持需求,在性别方面尽可能不同的人,社会经济地位,和设施与德语。访谈的定性数据将使用MAXQDA软件进行检查,采用扎根理论的方法进行分析。
结论:这项研究将开发一个全面的框架,以捕获非亲属护理人员在生命末期的细微差别经历。该框架将确定缺乏对非亲属护理人员的支持以及需要进一步研究的领域。
背景:该研究在德国临床试验注册(DeutschesRegisterKlinischerStudien)(注册N°DRKS00033889;注册日期:2024年4月5日)中进行了前瞻性注册。该研究可在世界卫生组织的国际临床试验注册平台搜索门户下进行搜索,在德国临床试验登记号下。
BACKGROUND: The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers.
OBJECTIVE: The aim of this research is to examine the role and contributions of non-kin caregivers in end-of-life care. The study intends to uncover their experiences, associated challenges, benefits, and requirements for support.
METHODS: In order to achieve this objective, a mixed-methods approach will be employed, gathering data through structured questionnaires from approximately 150 non-kin caregivers and in-depth interviews with up to 25 participants. The questionnaires will measure the impact, burden, and benefits of caregiving. The Burden Scale for Family Caregivers, the Benefits of Being a Caregiver Scale, the Family Inventory of Needs, the Positive Mental Health Scale, a Graphic Closeness Scale, and selected items of the Eurofamcare Common Assessment Tool for socio-demographic and caregiving-related data will be used. Quantitative data will be analysed using IBM SPSS Statistics 28 for descriptive analysis and group comparison. The objective of the qualitative in-depth interviews is to obtain a comprehensive picture of the personal experiences, motivations and support needs of members of the non-kin caregivers cohort, who are as heterogeneous as possible in terms of gender, socio-economic status, and facility with the German language. The qualitative data from the interviews will be examined using MAXQDA software, adopting a grounded theory approach for analysis.
CONCLUSIONS: This research will develop a comprehensive framework that captures the nuanced experiences of non-kin caregivers at the end of life. The framework will identify areas where support for non-kin caregivers is lacking and where further research is needed.
BACKGROUND: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00033889; date of registration: 05 April 2024). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.