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

照顾者说话：一个技术介导的讲故事的家庭照顾者的干预， 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一种针对未充分研究的人群的干预措施-- 痴呆症患者（PLWD）。这个项目是第一个纵向跟踪家庭照顾者的项目 变成丧亲之痛此外，干预，护理人员发言，采用了创新的 讲故事的方法-照片启发（使用照片来引发想法，感受和反应， 人的经验）-鼓励家庭照顾者使他们的死亡和丧亲之痛的意义 体验作为一种减少抑郁、焦虑和最终悲伤强度的方式。Caregiver Speaks是 通过随时可用的社交媒体网络（Facebook）部署，该网络允许轻松访问已 对负担过重的PLWD家庭照顾者，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RCT干预研究是可行的，2） 研究团队可以通过Facebook进行这种类型的讲故事干预，3）家庭护理人员使用 (and我想使用）社会媒体在积极的哀悼和进入丧亲之痛，尽管他们的沉重照顾 负担研究小组将根据Park和Folkman的压力意义制造模型提出建议 和应对该模型说明了个体如何科普不利的生活事件（即，创伤或死亡 通过重建和转换事件的意义，并纳入重新评估的意义， 一个人更大的自我叙述照顾者说话使用故事的形式，照片启发，为了 促进这种意义的形成。照顾者分享照片和讨论有关他们的照顾， 在一个私人的、方便的Facebook群组中体验丧亲之痛。这个模型表明，照顾者的能力 在人生的逆境中（丧亲之痛）找到意义（意义的创造），并从中获益。 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。 护理人员将被随机分配到：1）第1组，将接受护理人员发言 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。的 研究小组将采用定量和定性方法并行和平等的地位来衡量 干预的有效性。总体假设是，参与护理人员在分娩期间发言， 将照顾者的抑郁和焦虑，因此将减少悲伤的强度， 丧亲三个具体目标是：1）确定护理人员发言的有效性 在痴呆症患者的家庭照顾者中采取干预措施，减少抑郁和焦虑，2） 检查干预措施对患有抑郁症的人的丧亲家庭照顾者的悲伤强度的影响， 失智症，以及3）描述照顾者如何使他们的死亡和丧亲之痛的意义 经验

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.