Adapting a Telephone-Based, Dyadic Self-management Program to Be Delivered Over the Web: Methodology and Usability Testing.

BACKGROUND: The COVID-19 pandemic has amplified the need for web-based behavioral interventions to support individuals who are diagnosed with chronic conditions and their informal caregivers. However, most interventions focus on patient outcomes. Dyadic technology-enabled interventions that simultaneously improve outcomes for patients and caregivers are needed. OBJECTIVE: This study aimed to describe the methodology used to adapt a telephone-based, facilitated, and dyadic self-management program called Self-care Using Collaborative Coping Enhancement in Diseases (SUCCEED) into a self-guided, web-based version (web-SUCCEED) and to conduct usability testing for web-SUCCEED. METHODS: We developed web-SUCCEED in 6 steps: ideation-determine the intervention content areas; prototyping-develop the wireframes, illustrating the look and feel of the website; prototype refinement via feedback from focus groups; finalizing the module content; programming web-SUCCEED; and usability testing. A diverse team of stakeholders including content experts, web designers, patients, and caregivers provided input at various stages of development. Costs, including full-time equivalent employee, were summarized. RESULTS: At the ideation stage, we determined the content of web-SUCCEED based on feedback from the program's original pilot study. At the prototyping stage, the principal investigator and web designers iteratively developed prototypes that included inclusive design elements (eg, large font size). Feedback about these prototypes was elicited through 2 focus groups of veterans with chronic conditions (n=13). Rapid thematic analysis identified two themes: (1) web-based interventions can be useful for many but should include ways to connect with other users and (2) prototypes were sufficient to elicit feedback about the esthetics, but a live website allowing for continual feedback and updating would be better. Focus group feedback was incorporated into building a functional website. In parallel, the content experts worked in small groups to adapt SUCCEED's content, so that it could be delivered in a didactic, self-guided format. Usability testing was completed by veterans (8/16, 50%) and caregivers (8/16, 50%). Veterans and caregivers gave web-SUCCEED high usability scores, noting that it was easy to understand, easy to use, and not overly burdensome. Notable negative feedback included "slightly agreeing" that the site was confusing and awkward. All veterans (8/8, 100%) agreed that they would choose this type of program in the future to access an intervention that aims to improve their health. Developing and maintaining the software and hosting together cost approximately US $100,000, excluding salary and fringe benefits for project personnel (steps 1-3: US $25,000; steps 4-6: US $75,000). CONCLUSIONS: Adapting an existing, facilitated self-management support program for delivery via the web is feasible, and such programs can remotely deliver content. Input from a multidisciplinary team of experts and stakeholders can ensure the program's success. Those interested in adapting programs should have a realistic estimate of the budget and staffing requirements.

Learning to PERSEVERE: A pilot study of peer mentor support and caregiver education in Lewy body dementia.

BACKGROUND: Lewy Body Disease (LBD) is the second most common neurodegenerative disorder. Despite high family caregiver strain and adverse patient and caregiver outcomes, few interventions exist for LBD family caregivers. Based on a successful peer mentoring pilot study in advanced Parkinson's Disease, we revised the curriculum of this peer-led educational intervention incorporating LBD caregiver input. OBJECTIVE: We assessed feasibility of a peer mentor-led educational intervention and its impact on LBD family caregivers' knowledge, dementia attitudes, and mastery. METHODS: Using community-based participatory research, we refined a 16-week peer mentoring intervention and recruited caregivers online through national foundations. Experienced LBD caregiver mentors were trained and matched with newer caregiver mentees with whom they spoke weekly for 16 weeks, supported by the intervention curriculum. We measured intervention fidelity biweekly, program satisfaction, and change in LBD knowledge, dementia attitudes, and caregiving mastery before and after the 16-week intervention. RESULTS: Thirty mentor-mentee pairs completed a median of 15 calls (range: 8-19; 424 total calls; median 45 min each). As satisfaction indicators, participants rated 95.3% of calls as useful, and at week 16, all participants indicated they would recommend the intervention to other caregivers. Mentees' knowledge and dementia attitudes improved by 13% (p < 0.05) and 7% (p < 0.001), respectively. Training improved mentors' LBD knowledge by 32% (p < 0.0001) and dementia attitudes by 2.5% (p < 0.001). Neither mentor nor mentee mastery changed significantly (p = 0.36, respectively). CONCLUSIONS: This LBD caregiver-designed and -led intervention was feasible, well-received, and effective in improving knowledge and dementia attitudes in both seasoned and newer caregivers. TRIAL REGISTRATION: https://clinicaltrials.gov/ct2/show/NCT04649164ClinicalTrials.gov Identifier: NCT04649164; December 2, 2020.

IN-HOME-PDCaregivers: The effects of a combined home visit and peer mentoring intervention for caregivers of homebound individuals with advanced Parkinson's disease.

INTRODUCTION: Family caregivers of people with advanced Parkinson's Disease (PD) are at high risk of caregiver strain, which independently predicts adverse patient outcomes. We tested the effects of one year of interdisciplinary, telehealth-enhanced home visits (IN-HOME-PD) with 16 weeks of peer mentoring on caregiver strain compared with usual care. METHODS: We enrolled homebound people with advanced PD (PWPD) and their primary caregiver as IN-HOME-PD dyads. We trained experienced PD family caregivers as peer mentors. Dyads received four structured home visits focused on advanced symptom management, home safety, medications, and psychosocial needs. Starting at approximately four months, caregivers spoke weekly with a peer mentor for 16 weeks. We compared one-year change in caregiver strain (MCSI, range 0-72) with historical controls, analyzed intervention acceptability, and measured change in anxiety, depression, and self-efficacy. RESULTS: Longitudinally, IN-HOME-PD caregiver strain was unchanged (n = 51, 23.34 (SD 9.43) vs. 24.32 (9.72), p = 0.51) while that of controls worsened slightly (n = 154, 16.45 (10.33) vs. 17.97 (10.88), p = 0.01). Retention in peer mentoring was 88.2%. Both mentors and mentees rated 100% of mentoring calls useful, with mean satisfaction of 91/100 and 90/100, respectively. There were no clinically significant improvements in anxiety, depression, or self-efficacy. CONCLUSIONS: Interdisciplinary telehealth-enhanced home visits combined with peer mentoring mitigated the worsening strain observed in caregivers of less advanced individuals. Mentoring was met with high satisfaction. Future caregiver-led peer mentoring interventions are warranted given the growing, unmet needs of PD family caregivers. TRIAL REGISTRATION: NCT03189459.

Insights about personality traits and cognitive performance and decline in adults 51-59 Years old from the Wisconsin longitudinal study.

OBJECTIVES: To delineate midlife personality dimensions of early cognitive change in an age-homogenous sample of U.S. older adults. DESIGN: Longitudinal study of 6133 adults from the Wisconsin Longitudinal Study (WLS). MEASURES: Middle-aged participants (mean age = 53.2; SD = 0.6) from the WLS completed the 'Big-5' personality assessment in 1992. Mixed effects models examined whether midlife personality traits were associated with change in cognitive performance from participant's mid-60s (2004-2005) to early 70s (2011). The cognitive battery assessed abstract reasoning (AR), category fluency (CF), working memory (WM), and delayed verbal memory (DVM). Models adjusted for sex, education, and subjective health. RESULTS: High Openness was a significant predictor of change in AR, CF, and DVM. These cognitive outcomes declined less among those with high Openness, but the effect sizes for Openness by time were small (R2 s < 0.01). AR and CF were characterized by higher overall performance with high Openness, but with relatively parallel change for the highest and lowest Openness quartiles. There was no advantage of Openness to DVM by the second assessment. High Conscientiousness was a predictor of more change for DVM, though the effect size was small (R 2  < 0.01). CONCLUSIONS: None of the midlife personality traits were uniformly associated with change in cognitive performance in early older adulthood. High midlife Openness had the most noteworthy impact on cognition. Interventions designed to target Openness have potential to elevate and maintain a higher threshold of performance in some cognitive domains, but may only have a small impact on cognitive change.

Family Caregiver Comorbidities in Lewy Body Dementia Versus Alzheimer Disease and Associated Disorders.

BACKGROUND: Family caregivers of people living with dementia have high caregiver strain and poor health consequences. Limited research exists on Lewy body dementia (LBD) caregivers and their specific comorbidities. This study aimed to (1) identify the prevalence of self-reported comorbidities among LBD caregivers and (2) contextualize these findings with historical data on caregivers of persons living with Alzheimer disease and associated disorders (ADADs). METHODS: In a national, online survey, LBD family caregivers completed the Self-Administered Comorbidity Questionnaire and we compared these findings with extant literature on ADAD caregiver comorbidities. RESULTS: Among 217 LBD caregivers, 84.3% were female, 39.1% were 64 years old or younger, and 66.8% had >2 years of caregiving experience. Caregivers self-identified as current (83.9%) or former (16.1%) caregivers. The most frequent comorbidities were hypertension (38.2%), depression (35.0%), back pain (34.1%), and arthritis (27.7%). LBD caregivers, particularly younger caregivers, had a higher prevalence of depression compared with ADAD caregivers and older adult populations, and back pain prevalence nearly equivalent to spinal cord injury caregivers. CONCLUSIONS: Our study is the first to illustrate and contextualize specific comorbidities among LBD caregivers. Understanding the causality and impact of these conditions will be critical in designing effective interventions to improve the lives of families affected by LBD.

Clinic-based Assessment and Support for Family Caregivers of Patients With Cancer: Results of a Feasibility Study.

Background: Cancer caregiving is burdensome with unique needs, highlighting the importance of assessing caregivers' distress. Caregivers often accompany patients to healthcare visits, presenting an opportunity to complete distress screening at patients' point-of-care. Objective: To evaluate the feasibility of caregiver distress screening at patients' point-of-care and implementing a caregiver psychoeducational session. Methods: We approached caregivers in outpatient cancer clinic waiting rooms. Participants completed depression, burden, anxiety, quality of life, and stress measures. A psychoeducational session with a psychologist was offered to those meeting clinical cutoffs for depression and/or burden. Fifty caregivers completed 1+ measure; however, due to incomplete consent documentation, findings from 23 caregivers are reported. Results: 22% of caregivers screened positive for depression, 30% burden, and 70% anxiety. More than half rated stress as moderate or higher. Mental wellbeing was slightly below that of the general population. More than 75% screened positive on 1+ distress measure. Of the 9 caregivers who met cutoffs for depression and/or burden, two (22%) accepted the psychoeducational session. Conclusion: Caregivers were moderately receptive to distress screening during patients' visits, but were less receptive to engaging in the psychoeducational session due to time constraints and privacy concerns. Implications for Practice: Assessing caregivers' distress can facilitate referrals for supportive services. Offering caregivers psychoeducational intervention outside of patient care may not be acceptable. Future research may evaluate the integration of routine caregiver screening within patient care to promote engagement with mental health services. Foundational: This research offers a unique method of assessing cancer caregivers' distress.

Caregiver Experiences and Roles in Care Seeking During COPD Exacerbations: A Qualitative Study.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a progressive, debilitating illness characterized by exacerbations that require timely intervention. COPD patients often rely on informal caregivers-relatives or friends-for assistance with functioning and support. Caregivers perform roles that may be particularly important during acute exacerbations in monitoring symptoms and seeking medical intervention. However, little is known about caregivers' roles and experiences as they support their patients during exacerbations. PURPOSE: To explore the experiences, roles in care seeking, and needs of caregivers during COPD exacerbations. METHODS: Semi-structured interviews were conducted with 24 caregivers of Veterans with COPD who experienced a recent exacerbation. Interviews were recorded, transcribed, and analyzed using inductive content analysis. RESULTS: Five themes arose: (a) caregivers reported continuously monitoring changes in patients symptom severity to identify exacerbations; (b) caregivers described emotional reactions evoked by exacerbations and constant vigilance; (c) caregivers described disagreements with their patient in interpreting symptoms and determining the need for care seeking; (d) caregivers noted uncertainty regarding their roles and responsibilities in pursuing care and their approaches to promote care varied; and (e) expressed their need for additional information and support. Caregivers of patients with COPD often influence whether and when patients seek care during exacerbations. Discrepancies in symptom evaluations between patients and caregivers paired with the lack of information and support available to caregivers are related to delays in care seeking. Clinical practice should foster self-management support to patient-caregiver dyads to increase caregiver confidence and patient openness to their input during exacerbations.

Satisfaction with a Vacuum Constriction Device for Erectile Dysfunction among Middle-Aged and Older Veterans.

OBJECTIVES: To investigate satisfaction with a vacuum constriction device for middle-aged and older male Veterans with erectile dysfunction and their female partners. METHODS: Patients (N = 57; mean age = 64.28 years; SD = 8.7) received comprehensive education and training and ongoing follow-up of device use, which included a semi-structured interview. Female partners (n = 41) also rated their satisfaction with the device. RESULTS: Over 96% of patients (n = 53/56 responses) endorsed the ability to maintain an erection with the device and 100% (n = 56/56 responses) indicated they would recommend the device to others. Female partners generally rated sex as better with the device (83.8%; n = 31/37 responses). Physical discomfort using the device was reported among 23% of patients (n = 16), and often due to difficulty or pain with the constriction bands. Difficulty obtaining erections with the device, though infrequently reported, was more common with older age. CONCLUSIONS: The majority of male patients and their female partners receiving comprehensive training for vacuum constriction device use reported satisfaction with the device. CLINICAL IMPLICATIONS: Vacuum constriction devices can be highly effective in improving the sexual health and intimacy of Veterans of all ages experiencing erectile dysfunction.

A Case Report of Problem Solving Therapy for Reducing Suicide Risk in Older Adults with Anxiety Disorders.

Objectives: Suicide is a global public health problem among older adults. Problem-solving therapy (PST) has demonstrated promise in reducing late-life suicide risk, chiefly in secondary analyses of studies on late-life depression. PST mitigates negative beliefs about one's problem-solving abilities and maladaptive problem-solving styles, which suicidal older adults report. The effects of PST on suicide risk in older adults with primary anxiety disorder diagnoses have not been examined. Anxiety is a risk factor for suicide, but it is less studied in research on suicide compared to depression. This paper describes two cases of older individuals with anxiety disorders and suicidal ideation who completed six sessions of PST. Methods: Assessments of suicide risk, anxiety, depressive symptoms, and problem-solving ability were administered. Results: Both cases exhibited a clinically significant reduction in suicide risk, along with reductions in anxiety, worry, and depressive symptoms by posttreatment. Conclusions & Clinical Implications: Findings highlight the potential for PST as a psychotherapeutic intervention for reducing suicide risk in older adults with anxiety disorders.

Advancing Research on Psychosocial Stress and Aging with the Health and Retirement Study: Looking Back to Launch the Field Forward.

OBJECTIVES: The Health and Retirement Study (HRS) was designed as an interdisciplinary study with a strong focus on health, retirement, and socioeconomic environment, to study their dynamic relationships over time in a sample of mid-life adults. The study includes validated self-report measures and individual items that capture the experiences of stressful events (stressor exposures) and subjective assessments of stress (perceived stress) within specific life domains. METHODS: This article reviews and catalogs the peer-reviewed publications that have used the HRS to examine associations between psychosocial stress measures and psychological, physical health, and economic outcomes. RESULTS: We describe the research to date using HRS measures of the following stress types: traumatic and life events, childhood adversity, caregiving and other chronic stressors, discrimination, social strain and loneliness, work stress, and neighborhood disorder. We highlight how to take further advantage of the longitudinal study to test complex biopsychosocial models of healthy aging. DISCUSSION: The HRS provides one of the most comprehensive assessments of psychosocial stress in existing population-based studies and offers the potential for a deeper understanding of how psychosocial factors are related to healthy aging trajectories. The next generation of research examining stress and trajectories of aging in the HRS should test complex longitudinal and mediational relationships, include contextual factors in analyses, and include more collaboration between psychologists and population health researchers.

Poor Sleep Quality, Psychological Distress, and the Buffering Effect of Mindfulness Training During Pregnancy.

OBJECTIVE/BACKGROUND: Poor sleep quality is common in pregnancy and associated with increased psychological distress, which has adverse consequences for families. Emerging theory suggests that mindfulness-based interventions may help reduce cognitive and emotional reactivity to stressful events. The current study examines the effects of a mindfulness-based intervention on the relationship between poor sleep quality and increased depression symptom severity and perceived stress during pregnancy. Additionally, we explored the prevalence of poor sleep quality in this unique sample and the impact of intervention on sleep quality. PARTICIPANTS: Participants were 215 ethnically diverse, overweight and obese, predominantly low-income pregnant women drawn from a study examining the impact of an 8-week mindfulness-based program (Mindful Moms Training; MMT) to reduce excessive gestational weight gain, stress, and depression compared to treatment as usual (TAU). METHODS: Participants reported global sleep quality, depressive symptoms, and perceived stress at baseline and postintervention. RESULTS: Most participants (63%) were categorized as poor sleepers at baseline. MMT participants did not experience significantly greater improvement in sleep quality compared to TAU participants. Baseline poor global sleep quality predicted increased depression symptom severity for all participants. Baseline poor global sleep quality predicted increased perceived stress for the TAU group only; this association was not evident in the MMT group. CONCLUSIONS: Poor sleep quality is prevalent in overweight and obese predominantly low-income pregnant women. Poor sleep quality was associated with worsening psychological distress, but mindfulness training significantly attenuated the influence of poor sleep on perceived stress.