Developing Social Enhancements for a Web-Based, Positive Emotion Intervention for Alzheimer Disease Caregivers: Qualitative Focus Group and Interview Study.

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.

Randomized controlled trial of a positive emotion regulation intervention to reduce stress in family caregivers of individuals with Alzheimer's disease: protocol and design for the LEAF 2.0 study.

BACKGROUND: Caring for a loved one with Alzheimer's disease can be stressful, resulting in poorer emotional and physical health among family caregivers. Although supportive resources for caregivers are available, distance, caregiver health, and the daily demands of caregiving are barriers to access. Based on research demonstrating the importance of positive emotions in coping with stress, our previous trial showed that dementia caregivers who participated in facilitated, web-based delivery of a positive emotion regulation intervention called LEAF (Life Enhancing Activities for Family caregivers) experienced increased positive emotion and decreased depression and anxiety. Building on this evidence, the LEAF 2.0 study aims to test whether web-based, self-guided delivery can confer similar benefits for caregivers of individuals with Alzheimer's disease. METHODS: This paper presents the design and methods for LEAF 2.0, a 3-arm web-based randomized controlled trial (N = 500) in which family caregivers of patients with Alzheimer's disease (AD) are randomized to (1) the LEAF intervention facilitated remotely via the web (N = 200), (2) the LEAF intervention self-guided online (N = 200), or (3) an emotion reporting control (N = 100), which then crosses over to the intervention after approximately 6 months, half to the facilitated arm and half to the self-guided arm. We aim to (1) compare the effect of the facilitated and self-guided LEAF positive emotion interventions to an emotion reporting control condition on AD caregiver well-being (positive emotion, depression, anxiety, and perceived stress) and secondary outcomes (caregiving burden, caregiving self-efficacy, positive aspects of caregiving, quality of care, and AD patient quality of life); (2) assess whether effects are mediated by improvements in positive emotion or other aspects of caregiver well-being; and (3) test whether caregiver age or gender or the care recipient's dementia severity moderates the effects of the intervention. DISCUSSION: If demonstrated to be effective, LEAF can be widely disseminated and ultimately have a significant impact on the stress experienced by AD caregivers and the well-being of people living with Alzheimer's disease. TRIAL REGISTRATION: ClinicalTrials.gov NCT03610698.

Acceptability and Feasibility of a Socially Enhanced, Self-Guided, Positive Emotion Regulation Intervention for Caregivers of Individuals With Dementia: Pilot Intervention Study.

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.

Finding Sunshine on a Cloudy Day: A Positive Affect Intervention for Co-Occurring Methamphetamine Use and HIV.

Among sexual minority men (i.e., gay, bisexual, and other men who have sex with men) living with HIV, those who use methamphetamine experience profound health disparities. Affect Regulation Treatment to Enhance Methamphetamine Intervention Success (ARTEMIS) is an evidence-based, 5-session, individually delivered positive affect intervention adapted for sexual minority men living with HIV who use methamphetamine. ARTEMIS was designed to amplify the benefits of evidence-based substance use interventions such as contingency management (CM) with this high-priority population. Delivering ARTEMIS during CM has been shown to assist participants in reducing stimulant use, increasing positive affect, and achieving durable reductions in HIV viral load. We describe the theoretical underpinnings of the ARTEMIS intervention, provide details of the training and session protocols with a case example, and discuss implications for future applications in research and clinical settings.

An Approach to Reducing Problematic Data in an ACASI Sexual Behavior Assessment.

Minimizing error in self-reported sexual behavior could reduce investigators' likelihood of rejecting truly successful interventions to decrease HIV and STI transmission risk. Sexual behavior assessments can elicit problematic data. This may manifest in the form of elevated levels of non-response, inaccurate point estimates, or misclassification errors resulting in inappropriately answering or, perhaps more importantly, skipping questions. We programed conversational interviewing elements into 20 sexual behavior questions in an exit survey of gay bathhouse patrons (N = 459) administered using ACASI. Those elements, called alternate pathways, included follow-up questions to responses to confirm that operational definitions were applied in the answer (with return to the initial question if confirmation failed), and assurances of confidentiality and requests for best guesses in reaction to non-response (including "don't know"). These elements were invoked in nearly 10% of participants, and approximately 74% of all invocations resulted in a usable numeric response, or 87% if the data need only estimate prevalence. Almost two-thirds of the problematic data issues occurred in answers to sexual contact questions, with others related to follow-up questions about specific sexual behavior. It is at this level of important filtering questions where the benefits of the approach are likely to be maximized.

Building an HIV/STI prevention program in a gay bathhouse: a case study.

Gay bathhouses have long been subject to community and public health pressures owing to the perceived link between the behaviors associated with these settings and various sexually transmitted infections. The straightforward solution of closing gay bathhouses has not worked for long when it has been tried. The more complex approach of working with management to develop holistic prevention programs can be problematic also, because developing successful HIV/STD prevention programs requires the collaboration of multiple stake-holders. Furthermore, to overcome the stigma associated with disease, the population, and bathhouse environments places significant, and sometimes awkward, demands on those who undertake such prevention programs. Nevertheless, a number of U.S. cities now have had years of experience with such efforts. This article provides an example of a collaboration of multiple stakeholders to develop a holistic prevention program. We examine our own process of building a collaborative team of bathhouse managers, health department officials, and academics to provide HIV/STD prevention programs in a bathhouse. We describe the process of developing the collaboration and offer recommendations for establishing mutually beneficial relationships among stakeholders.