PDF(Pubmed)
Abstract：
BACKGROUND: Most caregivers of people living with dementia will experience bereavement within 10 years, but study of and support for their needs rarely persists following the death of their care recipients. A single model that leverages theoretical insights as well as observation from lived experience might help identify who will have greater difficulty following dementia-related bereavement and suggest core mechanisms to target to relieve clinical and subclinical consequences. The millions of existing bereaved dementia caregivers likely have considerable insight into ways to improve experience. Rather than creating interventions from scratch, researchers might leverage those insights to more rapidly improve the lives of bereaved dementia caregivers.
METHODS: This study uses a transformative mixed methods approach to explore the needs of caregivers for individuals with Alzheimer\'s disease (AD) and AD-related dementias, incorporating both quantitative surveys (n=400) and qualitative semistructured interviews (n=45) across diverse subgroups. The study described in this protocol aims to quantitatively test a new model based on self-determination theory to help understand when and why bereaved dementia caregivers experience better and worse outcomes following bereavement. The study also aims to qualitatively explore the ways that bereaved dementia caregivers might meet their needs to inform future interventions.
BACKGROUND: The study adheres to institutional guidelines, ensuring participant consent and minimising risks through verbal consent procedures and the removal of personal identifiers from survey responses. The study team will share findings widely through academic publications, conferences and targeted outreach to advocacy groups and healthcare professionals, while also providing concise summaries of results to participants and making them accessible through the lab\'s website.
METHODS: This study uses a transformative mixed methods approach to explore the needs of caregivers for individuals with Alzheimer\'s disease (AD) and AD-related dementias, incorporating both quantitative surveys (n=400) and qualitative semistructured interviews (n=45) across diverse subgroups. The study described in this protocol aims to quantitatively test a new model based on self-determination theory to help understand when and why bereaved dementia caregivers experience better and worse outcomes following bereavement. The study also aims to qualitatively explore the ways that bereaved dementia caregivers might meet their needs to inform future interventions.
BACKGROUND: The study adheres to institutional guidelines, ensuring participant consent and minimising risks through verbal consent procedures and the removal of personal identifiers from survey responses. The study team will share findings widely through academic publications, conferences and targeted outreach to advocacy groups and healthcare professionals, while also providing concise summaries of results to participants and making them accessible through the lab\'s website.
摘要：
背景：大多数痴呆症患者的照顾者将在10年内经历丧亲，但是在他们的护理接受者去世后，对他们需求的研究和支持很少持续存在。利用理论见解和生活经验观察的单一模型可能有助于确定谁在痴呆相关的丧亲后会遇到更大的困难，并提出核心机制以减轻临床和亚临床后果。数百万现有的失去亲人的痴呆症护理人员可能对改善体验的方法有相当深入的了解。而不是从头开始创建干预措施，研究人员可能会利用这些见解来更快地改善失去亲人的痴呆症护理人员的生活。
方法：本研究采用变革性的混合方法方法来探讨阿尔茨海默病（AD）和AD相关痴呆患者的照顾者的需求，将定量调查(n=400)和定性半结构化访谈(n=45)纳入不同亚组。该协议中描述的研究旨在定量测试基于自决理论的新模型，以帮助了解何时以及为什么丧亲的痴呆症照顾者在丧亲后会经历更好和更差的结果。该研究还旨在定性地探索失去亲人的痴呆症护理人员可能满足其需求的方式，以告知未来的干预措施。
背景：该研究遵循机构指南，通过口头同意程序和从调查答复中删除个人标识符，确保参与者同意并将风险降至最低。研究小组将通过学术出版物广泛分享发现，会议和有针对性的宣传团体和医疗保健专业人员，同时还向参与者提供简明的结果摘要，并使其可以通过实验室的网站访问。
方法：本研究采用变革性的混合方法方法来探讨阿尔茨海默病（AD）和AD相关痴呆患者的照顾者的需求，将定量调查(n=400)和定性半结构化访谈(n=45)纳入不同亚组。该协议中描述的研究旨在定量测试基于自决理论的新模型，以帮助了解何时以及为什么丧亲的痴呆症照顾者在丧亲后会经历更好和更差的结果。该研究还旨在定性地探索失去亲人的痴呆症护理人员可能满足其需求的方式，以告知未来的干预措施。
背景：该研究遵循机构指南，通过口头同意程序和从调查答复中删除个人标识符，确保参与者同意并将风险降至最低。研究小组将通过学术出版物广泛分享发现，会议和有针对性的宣传团体和医疗保健专业人员，同时还向参与者提供简明的结果摘要，并使其可以通过实验室的网站访问。
