Caregiver Speaks: A Technologically Mediated Storytelling Intervention for Family Caregivers ofIndividuals with Alzheimer's Disease and Other Dementias

照顾者说话：针对患有阿尔茨海默病和其他痴呆症的家庭照顾者的技术介导的讲故事干预

• 批准号: 10329148
• 负责人: Debra Parker Oliver
• 金额: $ 73.41万
• 依托单位: WASHINGTON UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-02-01 至 2024-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10329148
• 关键词: Address; Alzheimer' s Disease; American; Anxiety; Behavior Therapy; Behavioral; Bereavement; Bereavement Care; Caregivers; Caring; Cessation of life; Control Groups; Decision Making; Dementia; Disease; Distress; Environment; Event; Facebook; Family Caregiver; Feeling; Goals; Grief reaction; Individual; Intervention; Intervention Studies; Life; Measures; Mediating; Medicare; Mental Depression; Methods; Mission; Modeling; Outcome; Patients; Persons; Population; Privatization; Qualitative Methods; Qualitative Research; Randomized; Randomized Controlled Trials; Reaction; Reporting; Research; Resources; Services; Site; Social Impacts; Social support; Stress and Coping; Testing; Thinking; Trauma; Treatment Efficacy; United States National Institutes of Health; Work; age related; arm; base; care burden; caregiver depression; caregiving; coping; efficacy evaluation; experience; group intervention; health care service; hospice environment; improved; innovation; insight; interest; intervention effect; loved ones; social; social media; standard care

Caregiver Speaks: A Technologically Mediated Storytelling Intervention for Family Caregivers of Individuals with Alzheimer’s Disease and Other Dementias ABSTRACT This randomized controlled trial will test an intervention for an understudied population – family caregivers of persons living with dementia (PLWD). This project is the first of its kind to longitudinally follow family caregivers of PLWD into bereavement. Furthermore, the intervention, Caregiver Speaks, employs an innovative storytelling approach – photo elicitation (the use of photos to elicit thoughts, feelings, and reactions to a person’s experience) – to encourage family caregivers to make meaning of their caregiving and bereavement experiences as a way of reducing depression, anxiety, and ultimately grief intensity. Caregiver Speaks is deployed via a readily available social media network (Facebook), which allows easy access for already overburdened family caregivers of PLWD, and can improve their social support. Preliminary work demonstrates that 1) this project is feasible as an RCT intervention study of caregiver experiences, 2) the research team can conduct this type of storytelling intervention via Facebook, and 3) family caregivers use (and want to use) social media during active caregiving and into bereavement, despite their heavy care burdens. The research team will base the proposal on Park and Folkman’s meaning-making model of stress and coping. This model illustrates how individuals cope with adverse life events (i.e., trauma, or death of a loved one) by reconstructing and transforming the event’s meaning and incorporating the reappraised meaning into one’s larger self-narrative. Caregiver Speaks uses storytelling in the form of photo-elicitation, in order to facilitate this meaning-making. Caregivers share photos and discussions regarding their caregiving and bereavement experiences in a private, facilitated Facebook group. This model suggests that caregivers’ ability to make sense of (meaning making), and find benefit in an adverse life situation (caregiving and bereavement) will be validated through social support, and result in reduced depression, anxiety, and grief intensity. Caregivers will be randomly assigned to either: 1) Group 1, which will receive the Caregiver Speaks intervention, or 2) Group 2, which will receive standard care, including the standard care for bereavement. The research team will use both quantitative and qualitative methods in parallel and equal status to measure the intervention’s efficacy. The overall hypothesis is that participating in Caregiver Speaks during caregiving and into bereavement will reduce caregivers’ depression and anxiety, and as a result will reduce grief intensity in bereavement. The three specific aims are to: 1) determine the efficacy of the Caregiver Speaks intervention in reducing depression and anxiety among family caregivers of people with dementia, 2) examine the intervention’s effect on grief intensity among bereaved family caregivers of people with dementia, and 3) describe how caregivers made meaning of their caregiving and bereavement experiences.

照顾者说话：针对家庭照顾者的技术介导的讲故事干预 患有阿尔茨海默病和其他痴呆症的人 抽象的 这项随机对照试验将测试针对未受研究人群的干预措施——家庭照顾者 该项目是第一个纵向追踪家庭护理人员的项目。 此外，“看护者之声”干预措施采用了创新的方法。 讲故事的方法——照片启发（使用照片来引发想法、感受和对某个事物的反应） 人的经历）——鼓励家庭照顾者理解他们的照顾和丧亲之痛 体验作为减少抑郁、焦虑和最终悲伤强度的一种方式。 通过现成的社交媒体网络（Facebook）部署，这使得已经存在的用户可以轻松访问 PLWD的家庭照顾者负担过重，可以改善他们的前期工作。 表明 1) 该项目作为护理人员经验的 RCT 干预研究是可行的，2) 研究团队可以通过 Facebook 进行这种讲故事的干预，并且 3) 家庭护理人员使用 （并且想要使用）社交媒体在积极的照顾和丧亲期间，尽管他们受到沉重的照顾 研究小组将根据 Park 和 Folkman 的压力意义构建模型提出该提案。 该模型说明了个人如何应对不利的生活事件（即创伤或死亡）。 所爱的人）通过重建和转变事件的意义并融入重新评估的意义 《看护者之言》以照片启发的形式讲述故事，以实现更大的自我叙述。 帮助护理人员分享有关他们的护理和护理的照片和讨论。 这个模型表明，在一个私人的、便利的 Facebook 群组中的丧亲经历表明了照顾者的能力。 理解（意义创造），并在不利的生活状况（照顾和丧亲）中找到好处 将通过社会支持得到验证，并减少抑郁、焦虑和悲伤的强度。 护理人员将被随机分配到： 1) 第 1 组，该组将接受护理人员演讲 干预，或 2) 第 2 组，将接受标准护理，包括丧亲之痛的标准护理。 研究团队将采用定量和定性两种方法并列、平等地衡量 总体假设是参与护理人员在护理和护理过程中说话。 丧亲之痛会减少照护者的抑郁和焦虑，从而降低患者的悲伤强度 丧亲之痛的三个具体目标是： 1) 确定看护者发言的有效性。 干预减少痴呆症患者家庭照顾者的抑郁和焦虑，2) 检查干预措施对患有此病的患者的家属照顾者的悲伤强度的影响 痴呆症，以及 3) 描述护理人员如何理解他们的护理和丧亲之痛的意义 经验。