Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners’ experiences; explore how the use of the website, influences family caregivers’ preparedness for caregiving and death; explore how the use of the website influences family caregivers’ knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers’ preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient’s death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers’ preparedness and long-term health may change future clinical work. The study is registered at ClinicalTrials.gov: NCT03676283.

中文翻译：

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对在家中被照顾的重病患者的家庭照料者的照料和死亡准备工作有所提高–基于网络干预的研究方案

患有严重疾病且需要姑息治疗方法的患者的家庭护理人员面临众多挑战，并报告称其对护理人员角色的准备不足，以及对信息和社会心理支持的需求。准备照顾重病家庭成员也意味着要意识到死亡。准备的感觉与积极方面有关，被认为可以防止负面的健康后果。该研究遵循SPIRIT指南（补充1），使用事前设计，并包括基于Web的干预措施。纳入标准为：是重病患者​​的家庭照顾者，需要姑息治疗方法。旨在增加护理和死亡准备的干预措施以理论，研究和临床经验为基础。主题涵盖：医疗问题，症状和症状缓解；夫妻之间的沟通，如何度过死亡之前的时间，如何照顾，规划死亡时刻以及；对未来的考虑。通过视频和内容丰富的文本介绍了干预措施。该网站还举办了一个在线同行支持讨论论坛。研究目的是：从框架，内容，用法和合作伙伴的经验方面评估可行性；探索该网站的使用如何影响家庭护理人员对护理和死亡的准备；探索该网站的使用如何影响家庭护理人员对医疗问题的了解，与患者的沟通以及对未来的考虑；并调查家庭看护人对照料和死亡的准备如何影响病人死后一年的身体和心理健康以及生活质量。数据将通过定性访谈和针对特定研究的问卷在四个时间点进行收集。该项目将提供有关以下信息的信息：通过网站提供的支持是否有可能增加护理和死亡的准备，从而减少严重疾病患者的家庭护理对健康的负面影响。它将在姑息治疗方面提供有关干预措施开发，实施和评估的新知识。死亡前因素的识别及其与家庭护理人员的准备和长期健康的联系可能会改变未来的临床工作。