Background 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. Objective 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. Methods 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. Results 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. Conclusions 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.
Background Ten million parents provide unpaid care to children living with chronic conditions, such as asthma, and a high percentage of these parents are in marginalized communities, including racial and ethnic minority and low-income families. There is an urgent need to develop technology-enabled tailored solutions to support the self-care needs of these parents. Objective This study aimed to use a participatory design approach to describe and compare Latino and non-Latino parents’ current self-care practices, needs, and technology preferences when caring for children with asthma in marginalized communities. Methods The participatory design approach was used to actively engage intended users in the design process and empower them to identify needs and generate design ideas to meet those needs. Results Thirteen stakeholders participated in three design sessions. We described Latino and non-Latino parents’ similarities in self-care practices and cultural-specific preferences. When coming up with ideas of technologies for self-care, non-Latino parents focused on improving caregiving stress through journaling, daily affirmations, and tracking feelings, while Latino parents focused more on relaxation and entertainment. Conclusions Considerations need to be taken beyond language differences when developing technology-enabled interventions for diverse populations. The community partnership approach strengthened the study’s inclusive design.
According to national estimates, postpartum depression (PPD) affects up to 15% of new mothers in the United States, with longterm adverse effects for both mother and child if untreated (Ko,
STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is an evidence-based intervention that teaches family caregivers how to manage behavioral and psychological symptoms of dementia. The study objective was to identify what adaptations to STAR-VTF are needed to improve cultural relevance for Latino caregivers. A qualitative research study was conducted that interviewed Spanish- and English-speaking caregivers of people with dementia who self-identify as Hispanic/Latino (N = 30) and healthcare and social service providers of older Latino clients and/or Latino family caregivers (N = 14). Thematic analysis methods were applied to code and analyze interview transcripts. The codebook was theory-driven, relying mainly on codes that directly represented components of the Cultural Treatment Adaptation Framework. Based on the content of the excerpts, the codes were sorted into themes that represented opportunities to culturally adapt STAR-VTF. Three themes were identified: (i) there was a need to increase awareness about dementia and decrease stigma; (ii) semantics mattered as certain words and phrases could be stigmatizing, offensive, or culturally inappropriate; and (iii) there was a need to incorporate into program materials the traditional family structure and nature of caregiving in Latino families. Based on findings, adaptations were performed on STAR-VTF that included expanding content to improve understanding of dementia, revising language that was viewed as problematic, and adding cultural examples to reflect the range of family involvement in caring for people living with dementia and multigenerational living. Findings from this qualitative research study advance understanding of the Latino caregiver experience and how to modify programs to better serve their needs.
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