Department of Palliative Medicine, CCC Erlangen-EMN, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU), Erlangen, Germany.
Institute for General Practice and Palliative Care, Hannover Medical School, Hannover, Germany.
PLoS One. 2024 Jun 27;19(6):e0306282. doi: 10.1371/journal.pone.0306282. eCollection 2024.
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.
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.
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.
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.
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.
非亲属照料者（如朋友、邻居和熟人）在提供临终关怀方面发挥着重要作用，但在研究和政策讨论中往往被忽视。这些照料者除了家庭成员之外，还为临终关怀中的个人提供广泛的支持。然而，文献中关于非亲属照料者的经验、负担和益处的证据有限。
本研究旨在探讨非亲属照料者在临终关怀中的角色和贡献。研究旨在揭示他们的经验、相关挑战、益处和支持需求。
为了实现这一目标，将采用混合方法，通过大约 150 名非亲属照料者的结构化问卷和至多 25 名参与者的深入访谈收集数据。问卷将衡量照料的影响、负担和益处。使用的工具包括：家庭照料者负担量表、成为照料者的益处量表、家庭需求清单、积极心理健康量表、图形亲近量表，以及 Eurofamcare 共同评估工具中与社会人口学和照料相关的数据的选定项目。使用 IBM SPSS Statistics 28 进行描述性分析和组间比较对定量数据进行分析。深入访谈的目的是全面了解非亲属照料者群体的个人经历、动机和支持需求，他们在性别、社会经济地位和德语熟练程度方面尽可能多样化。使用 MAXQDA 软件对访谈的定性数据进行检查，采用扎根理论方法进行分析。
本研究将制定一个全面的框架，捕捉非亲属照料者在生命末期的细微体验。该框架将确定非亲属照料者支持不足的领域和需要进一步研究的领域。
该研究在德国临床试验注册处（Deutsches Register Klinischer Studien）进行了前瞻性注册（注册号：DRKS00033889；注册日期：2024 年 4 月 5 日）。该研究可在世界卫生组织国际临床试验注册平台搜索门户下，通过德国临床试验注册处编号在德国临床试验注册处进行搜索。
