Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study.
Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study.
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作者：
Ramirez M;Duran MC;Pabiniak CJ;Hansen KE;Kelley A;Ralston JD;McCurry SM;Teri L;Penfold RB
痴呆症的行为和心理症状 (BPSD) 与痴呆症患者家庭护理人员的压力、负担和抑郁增加有关。 STAR-Caregivers 虚拟培训和随访 (STAR-VTF) 改编自一项基于证据的面对面项目，该项目培训家庭护理人员管理 BPSD。我们采用以人为本的设计方法来获取家庭护理人员对 STAR-VTF 的反馈。该计划将通过务实的随机试验进行评估。该研究的目的是了解家庭护理人员改善 BPSD 管理的需求以及护理人员认为 STAR-VTF 可以在多大程度上满足这些需求。 2019 年 7 月至 9 月期间，我们对在西雅图都会区 Kaiser Permanente Washington 接受护理的痴呆症患者的家庭护理人员进行了 15 次半结构化访谈。我们从电子健康记录中识别了参与者，主要是根据痴呆症患者的抗精神病药物处方（处理 BPSD 的护理人员的代表）。我们向护理人员展示了 STAR-VTF 在线自导材料的低保真原型，并口头描述了潜在的设计元素。我们收集了护理人员对这些要素的反馈，重点关注他们的需求和偏好以及使用 STAR-VTF 的感知障碍。我们使用归纳和演绎编码以及聚合代码的混合方法来开发主题。学习管理 BPSD 的虚拟培训计划的想法吸引了护理人员。他们表示，医疗保健提供者没有在疾病早期阶段就可能影响痴呆症患者的性格和行为症状提供足够的教育。当痴呆症患者开始出现 BPSD 时，护理人员感到意外和沮丧，他们觉得自己没有准备好应对这些症状。因此，护理人员强烈希望医疗保健组织尽快提供 STAR-VTF 等计划。护理人员已经投入了大量精力来解决具有挑战性的行为问题。他们预计届时从 STAR-VTF 获得的价值会减少。尽管如此，许多人对培训的虚拟方面感兴趣，因为从家里接受帮助很方便，并且认为虚拟计划的帮助比传统服务方式（例如面对面）更及时。鉴于护理人员的时间有限，他们建议将 STAR-VTF 内容分成几块，以便在时间允许的情况下进行审查。护理人员有兴趣拥有 STAR-VTF 提供商，以在管理挑战性行为方面获得额外支持。护理人员表示更愿意在项目期间使用同一位教练。我们采访的护理人员可能会接受 STAR-VTF 等虚拟培训计划，以获取有关 BPSD 的信息并获得管理它的帮助。如果在病程早期提供 STAR-VTF，家庭护理人员预计会获得更多价值。
Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial. The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. Between July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.