Ramirez Magaly, Duran Miriana C, Pabiniak Chester J, Hansen Kelly E, Kelley Ann, Ralston James D, McCurry Susan M, Teri Linda, Penfold Robert B
Department of Health Services, University of Washington School of Public Health, Seattle, WA, United States.
Kaiser Permanente Washington Health Research Institute, Seattle, WA, United States.
JMIR Aging. 2021 Feb 10;4(1):e24965. doi: 10.2196/24965.
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.
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增加、负担加重及抑郁情绪相关。STAR-护理人员虚拟培训与随访（STAR-VTF）改编自一个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，以获取家庭护理人员对STAR-VTF的反馈。该项目将通过一项实用随机试验进行评估。
本研究的目的是了解家庭护理人员在改善BPSD管理方面的需求，以及护理人员认为STAR-VTF能够满足这些需求的程度。
2019年7月至9月期间，我们对在西雅图都会区的凯撒永久医疗集团华盛顿分部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。我们主要根据痴呆症患者的抗精神病药物处方（这是护理人员应对BPSD的一个指标）从电子健康记录中确定参与者。我们向护理人员展示了STAR-VTF在线自主学习材料的低保真原型，并口头描述了潜在的设计元素。我们获取了护理人员对这些元素的反馈，重点关注他们的需求、偏好以及使用STAR-VTF的感知障碍。我们采用归纳编码和演绎编码相结合的方法，并汇总编码以形成主题。
一个用于学习管理BPSD的虚拟培训项目的想法吸引了护理人员。他们表示，医疗保健提供者在疾病早期阶段没有就可能影响痴呆症患者的人格和行为症状提供足够的教育。当痴呆症患者开始出现BPSD症状时，护理人员感到意外且沮丧，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机构能更早地提供诸如STAR-VTF这样的项目。护理人员已经在解决具有挑战性的行为方面付出了相当大的努力。他们预计在那个时候从STAR-VTF中获得的价值会减少。尽管如此，由于在家中就能获得帮助很方便，而且认为虚拟项目提供的帮助会比传统服务方式（如面对面）更及时，许多人对培训的虚拟方面感兴趣。考虑到护理人员时间有限，他们建议将STAR-VTF的内容分成几个部分，以便在时间允许时进行复习。护理人员希望有一个STAR-VTF提供者，以便在管理具有挑战性的行为方面获得额外支持。护理人员表示希望在整个项目期间都由同一位指导教练指导。
我们采访的护理人员可能会接受诸如STAR-VTF这样的虚拟培训项目，以获取有关BPSD的信息并获得管理它的帮助。如果在疾病进程中更早地提供STAR-VTF，家庭护理人员预计会从中获得更多价值。
