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

照顾者发言：为家庭照顾者提供技术中介的讲故事干预 阿尔茨海默病和其他痴呆症患者 摘要 这项随机对照试验将测试对研究不足的人群-家庭照顾者的干预。 痴呆症患者(PLWD)。这个项目是第一个对家庭照顾者进行纵向跟踪的项目 变成了丧亲之痛。此外，Caregiver表示，干预措施采用了一种创新的 讲故事的方法-照片引出(使用照片来引发思想，感觉，和对 个人经历)-鼓励家庭照顾者充分利用他们的照顾和丧失亲人的经历 体验是一种减少抑郁、焦虑，并最终减少悲伤强度的方法。护理员说的是 通过随时可用的社交媒体网络(Facebook)部署，允许轻松访问已有的 增加了PLWD的家庭照顾者的负担，并可以改善他们的社会支持。前期工作 证明1)该项目作为照顾者经验的随机对照试验干预研究是可行的，2) 研究团队可以通过Facebook进行这种讲故事的干预，3)家庭照顾者使用 在积极照顾和失去亲人期间(并想使用)社交媒体，尽管他们有繁重的照顾 负担。研究小组将以Park和Folkman的压力意义构建模型为基础提出这一建议 以及如何应对。该模型说明了个人如何应对不利的生活事件(例如，创伤或死亡 所爱的人)通过重建和转换事件的意义，并纳入重新评估的意义 变成一个人更大的自我叙述。Caregier Talk使用照片启发的形式讲故事，以便 促进这种意义的产生。照顾者分享照片和讨论他们的照看和 在一个私人的、方便的Facebook群中体验丧亲。这个模型表明，照顾者的能力 理解(意义)，并在不利的生活环境(照顾和丧失亲人)中找到好处 将通过社会支持得到验证，并导致减少抑郁、焦虑和悲伤强度。 照顾者将被随机分配到以下任一组：1)第一组，将接受照顾者发言 干预，或2)组2，将接受标准护理，包括标准的丧亲护理。这个 研究小组将使用定量和定性两种方法平行和平等地衡量 干预的效果。总体假设是，参与照顾者在照看和 进入丧亲状态将减少照顾者的抑郁和焦虑，因此将减少悲痛强度。 丧亲之痛。这三个具体目标是：1)确定照顾者讲话的效果 减少痴呆症患者家庭照顾者抑郁和焦虑的干预，2) 检查干预对失去亲人的家庭照顾者悲痛强度的影响 痴呆症，以及描述照顾者如何利用他们的照顾和丧亲之痛 经历。

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.