ABSTRACT
BACKGROUND: Alzheimer disease is a degenerative neurological condition that requires long-term care. The cost of these responsibilities is often borne by informal caregivers, who experience an elevated risk of negative physical and psychological outcomes. Previously, we designed a positive emotion regulation intervention that was shown to improve well-being among dementia caregivers when delivered through one-on-one videoconferencing lessons with a trained facilitator. However, the format required significant resources in terms of logistics and facilitator time. To broaden the reach of the intervention, we aimed to develop the Social Augmentation of Self-Guided Electronic Delivery of the Life Enhancing Activities for Family Caregivers (SAGE LEAF) program, an iteration of the intervention in a self-guided, web-based format with enhanced opportunities for social connection. OBJECTIVE: The aim of this study was to gather feedback to inform the design of social features for the SAGE LEAF intervention. In the absence of a facilitator, our goal with the self-guided SAGE LEAF intervention was to integrate various social features (eg, discussion board, automated support, and profiles) to maximize engagement among participants. METHODS: Qualitative data were collected from 26 individuals through (1) interviews with participants who completed a previous version of the intervention via videoconferencing with a facilitator, (2) focus groups with dementia caregivers who had not previously experienced the intervention, and (3) focus groups with Alzheimer disease clinical care providers. We conducted a qualitative thematic analysis to identify which social features would be the most helpful and how they could be implemented in a way that would be best received by caregivers. RESULTS: Interview and focus group feedback indicated that participants generally liked the potential features suggested, including the discussion boards, multimedia content, and informational support. They had valuable suggestions for optimal implementation. For example, participants liked the idea of a buddy system where they would be matched up with another caregiver for the duration of the study. However, they expressed concern about differing expectations among caregivers and the possibility of matched caregivers not getting along. Participants also expressed interest in giving caregivers access to a podcast on the skills, which would allow them to review additional content when they wished. CONCLUSIONS: Taken together, the discussions with caregivers and providers offered unique insights into the types of social features that may be integrated into the SAGE LEAF intervention, as well as implementation suggestions to improve the acceptability of the features among caregivers. These insights will allow us to design social features for the intervention that are optimally engaging and helpful for caregivers.
ABSTRACT
BACKGROUND: The responsibilities of being a primary caregiver for a loved one with dementia can produce significant stress for the caregiver, leading to deleterious outcomes for the caregiver's physical and psychological health. Hence, researchers are developing eHealth interventions to provide support for caregivers. Members of our research team previously developed and tested a positive emotion regulation intervention that we delivered through videoconferencing, in which caregiver participants would meet one-on-one with a trained facilitator. Although proven effective, such delivery methods have limited scalability because they require significant resources in terms of cost and direct contact hours. OBJECTIVE: This study aimed to conduct a pilot test of a socially enhanced, self-guided version of the positive emotion regulation intervention, Social Augmentation of Self-Guided Electronic Delivery of the Life Enhancing Activities for Family Caregivers (SAGE LEAF). Studies have shown that social presence or the perception of others in a virtual space is associated with enhanced learning and user satisfaction. Hence, the intervention leverages various social features (eg, discussion boards, podcasts, videos, user profiles, and social notifications) to foster a sense of social presence among participants and study team members. METHODS: Usability, usefulness, feasibility, and acceptability data were collected from a pilot test in which participants (N=15) were given full access to the SAGE LEAF intervention over 6 weeks and completed preintervention and postintervention assessments (10/15, 67%). Preliminary outcome measures were also collected, with an understanding that no conclusions about efficacy could be made, because our pilot study did not have a control group and was not sufficiently powered. RESULTS: The results suggest that SAGE LEAF is feasible, with participants viewing an average of 72% (SD 42%) of the total available intervention web pages. In addition, acceptability was found to be good, as demonstrated by participants' willingness to recommend the SAGE LEAF program to a friend or other caregiver. Applying Pearson correlational analyses, we found moderate, positive correlation between social presence scores and participants' willingness to recommend the program to others (r9=0.672; P=.03). We also found positive correlation between social presence scores and participants' perceptions about the overall usefulness of the intervention (r9=0.773; P=.009). This suggests that participants' sense of social presence may be important for the feasibility and acceptability of the program. CONCLUSIONS: In this pilot study, the SAGE LEAF intervention demonstrates potential for broad dissemination for dementia caregivers. We aim to incorporate participant feedback about how the social features may be improved in future iterations to enhance usability and to further bolster a sense of social connection among participants and study staff members. Next steps include partnering with dementia clinics and other caregiver-serving organizations across the United States to conduct a randomized controlled trial to evaluate the effectiveness of the intervention.
ABSTRACT
BACKGROUND: Annual cognitive screening in adults aged >65 years can improve early detection of cognitive impairment, yet less than half of all cases are identified in primary care. Time constraints in primary care settings present a major barrier to routine screening. A remote cognitive screener completed on a patient's own smartphone before a visit has the potential to save primary care clinics time, encourage broader screening practices, and increase early detection of cognitive decline. OBJECTIVE: We described the iterative design and proposed the implementation of a remote cognitive screening app, MyCog Mobile, to be completed on a patient's smartphone before an annual wellness visit. The research questions were as follows: What would motivate primary care clinicians and clinic administrators to implement a remote cognitive screening process? How might we design a remote cognitive screener to fit well with existing primary care workflows? What would motivate an older adult patient to complete a cognitive screener on a smartphone before a primary care visit? How might we optimize the user experience of completing a remote cognitive screener on a smartphone for older adults? METHODS: To address research questions 1 and 2, we conducted individual interviews with clinicians (n=5) and clinic administrators (n=3). We also collaborated with clinic administrators to create user journey maps of their existing and proposed MyCog Mobile workflows. To address research questions 3 and 4, we conducted individual semistructured interviews with cognitively healthy older adults (n=5) and solicited feedback from a community stakeholder panel (n=11). We also tested and refined high-fidelity prototypes of the MyCog Mobile app with the older adult interview participants, who rated the usability on the Simplified System Usability Scale and After-Scenario Questionnaire. RESULTS: Clinicians and clinic administrators were motivated to adopt a remote cognitive screening process if it saved time in their workflows. Findings from interviews and user journey mapping informed the proposed implementation and core functionality of MyCog Mobile. Older adult participants were motivated to complete cognitive screeners to ensure that they were cognitively healthy and saw additional benefits to remote screening, such as saving time during their visit and privacy. Older adults also identified potential challenges to remote smartphone screening, which informed the user experience design of the MyCog Mobile app. The average rating across prototype versions was 91 (SD 5.18) on the Simplified System Usability Scale and 6.13 (SD 8.40) on the After-Scenario Questionnaire, indicating above-average usability. CONCLUSIONS: Through an iterative, human-centered design process, we developed a viable remote cognitive screening app and proposed an implementation strategy for primary care settings that was optimized for multiple stakeholders. The next steps include validating the cognitive screener in clinical and healthy populations and piloting the finalized app in a community primary care clinic.
