Addressing the Needs of Key Subgroups of Caregivers of Persons with Dementia After Loss Using Self-Determination Theory: A Mixed Methods Approach

使用自决理论满足失智后痴呆症患者照顾者关键亚群的需求：混合方法

• 批准号: 10731194
• 负责人: Zachary G Baker
• 金额: $ 24.9万
• 依托单位: ARIZONA STATE UNIVERSITY-TEMPE CAMPUS
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-01 至 2025-12-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10731194
• 关键词: Address; Adult Children; Affect; Age; Alzheimer' s Disease; Alzheimer' s disease related dementia; Area; Award; Bereavement; Caregivers; Clinical; Communities; Competence; Complement; Dementia; Dementia caregivers; Development; Ensure; Ethnic Origin; Extended Family; Feedback; Funding; Future; Gender; Geographic Locations; Goals; Grief reaction; Impairment; Intervention; Interview; Leadership; Literature; Loneliness; Measures; Mentorship; Methods; Modeling; Motivation; Outcome; Pathologic; Personal Growth; Personal Satisfaction; Persons; Phase; Physical Function; Process; Public Health Schools; Qualitative Methods; Race; Research; Research Personnel; Sampling; Science; Self Care; Self Determination; Siblings; Source; Spouses; Structure; Subgroup; Surveys; Testing; Time; Training; United States National Institutes of Health; Work; clinical risk; cognitive interview; community organizations; coping; dementia caregiving; depressive symptoms; design; ethnic minority; experience; innovation; medical specialties; member; novel; outreach; programs; racial minority; recruit; satisfaction; sex; stakeholder perspectives; theories; therapy development

Project Summary / Abstract Within 10 years, most persons living with Alzheimer’s disease and related dementias (AD/ADRD; PLWD) will die, creating 13+ million new bereaved AD/ADRD caregivers. 25% of bereaved AD/ADRD caregivers have clinically ‘complicated grief’, which impairs nearly all aspects of their lives. Among bereaved AD/ADRD caregivers who are not clinically impaired, millions still suffer from higher depressive symptoms and loneliness as well as reduced well-being, physical function, self-care, and personal growth. Researchers may be tempted to treat bereaved AD/ADRD caregivers as a homogenous group, but bereavement differs between key kin subgroups of spouses and adult children. Unfortunately, how bereavement differs for extended family is difficult to discern. The long-term goal of this research is to develop interventions to meet the needs of bereaved AD/ADRD caregivers. The objective of this proposal is to test a comprehensive model of bereaved AD/ADRD caregiver needs and identify need satisfying experiences within key kin subgroups that are amenable to future intervention. The central hypothesis is that bereaved AD/ADRD caregivers have a common set of needs that influence clinical and subclinical outcomes, but that subgroups meet those needs in different ways, based on evidence from self-determination theory and 10 months observing bereaved AD/ADRD caregivers. Autonomy, competence, and relatedness are hypothesized to form a common set of needs essential to clinical and subclinical outcomes for bereaved AD/ADRD caregivers (Aim 2; tested in a survey of 400 bereaved AD/ADRD caregivers). Key subgroups are hypothesized to meet these needs differently (Aim 3; tested in semi-structured interviews with 36-45 bereaved AD/ADRD caregivers). Through a tailored training plan and world-renowned- expert mentorship in one of the nation’s foremost schools of public health, the candidate will gain expertise in bereavement, stakeholder engagement, qualitative methods, and mixed methods to facilitate completion of the long-term goal of this research. Complementing the research team, a Community Advisory Board (CAB) of bereaved AD/ADRD caregivers and stakeholders will advise the present project and the PI’s broader research program aimed at helping bereaved AD/ADRD caregivers. CAB members represent different races, ethnicities, sexes, genders, ages, clinical specialties, types of dementia, time since bereavement, community organizations, and geographic locations. After this award, the CAB will help guide development of interventions based on the findings of Aims 2 and 3. The proposed research is innovative in its focus on key subgroups, application of self-determination theory, and diverse CAB focused on bereaved AD/ADRD caregivers. The work will address the NIA’s goal to increase understanding of bereaved AD/ADRD caregivers’ needs, informing future interventions that reduce the clinical and subclinical consequences of bereavement. Together the integrated research strategy and training plan will also facilitate a successful transition to independence for a researcher committed to helping PLWD and their caregivers thrive throughout the dementia caregiving journey.

项目概要/摘要 10 年内，大多数患有阿尔茨海默病和相关痴呆症（AD/ADRD；PLWD）的人将 死亡，创造了超过 1300 万失去亲人的 AD/ADRD 照顾者，其中 25% 失去亲人的 AD/ADRD 照顾者。 临床上的“复杂的悲伤”，几乎损害了失去亲人的 AD/ADRD 的各个方面。 没有临床损伤的护理人员，数百万人仍然患有更严重的抑郁症状和孤独感 以及健康、身体机能、自我保健和个人成长的降低。 将失去亲人的 AD/ADRD 照顾者视为同质群体，但关键亲属之间的丧亲之痛有所不同 不幸的是，对于大家庭来说，丧亲之痛有何不同是很困难的。 这项研究的长期目标是制定干预措施来满足丧亲者的需求。 该提案的目的是测试失去亲人的 AD/ADRD 的综合模型。 照顾者的需求，并确定关键亲属亚群体中适合未来的需求满足体验 中心假设是失去亲人的 AD/ADRD 照顾者有一系列共同的需求： 影响临床和亚临床结果，但亚组以不同的方式满足这些需求，基于 来自自决理论和 10 个月观察失去亲人的 AD/ADRD 自主性的证据， 能力和相关性被突袭以形成对临床和治疗至关重要的一组共同需求 失去亲人的 AD/ADRD 照顾者的亚临床结果（目标 2；在对 400 名失去亲人的 AD/ADRD 的调查中进行测试 对关键小组进行培训，以满足这些不同的需求（目标 3；在半结构化测试中进行测试） 采访 36-45 名失去亲人的 AD/ADRD 护理人员）。 在美国最重要的公共卫生学院之一的专家指导下，候选人将获得以下方面的专业知识 丧亲之痛、利益相关者参与、定性方法和混合方法，以促进完成 社区咨询委员会 (CAB) 是这项研究的长期目标。 失去亲人的 AD/ADRD 照顾者和利益相关者将为当前项目和 PI 更广泛的研究提供建议 旨在帮助失去亲人的 AD/ADRD 护理人员的计划，CAB 成员代表不同种族、民族、 性别、性别、年龄、临床专科、痴呆类型、丧亲后的时间、社区 获得该奖项后，CAB 将帮助指导干预措施的制定。 基于目标 2 和 3 的调查结果。拟议的研究在重点关注关键亚组方面具有创新性， 自我决定理论的应用，以及针对失去亲人的 AD/ADRD 照顾者的多样化 CAB。 工作将实现 NIA 的目标，即增进对失去亲人的 AD/ADRD 护理人员需求的了解， 未来的干预措施可以减少丧亲之痛的临床和亚临床后果。 综合研究战略和培训计划也将有助于成功过渡到独立 研究人员致力于帮助 PLWD 及其护理人员在痴呆症护理过程中茁壮成长。