This article explores the transformative partnership between Duke Global Neurosurgery and Neurology (DGNN) and Uganda, emphasizing the power of dyads in international collaboration. It details the partnership\'s focus on service, research, and training, highlighting key accomplishments like the establishment of a neurosurgery residency program, expansion of services, and an epilepsy clinic. Challenges such as resource constraints and cross-cultural collaboration are addressed. Recommendations are provided for developing similar partnerships, underlining the importance of mutual respect, shared goals, and long-term commitment. The DGNN-Uganda dyad is a blueprint for leveraging collaboration to improve global neurosurgical care and reduce health care inequities.

OBJECTIVE: Symptom clusters have important health implications in the context of cancer, but the symptom cluster experiences of cancer caregivers and patient-caregiver dyads are not well studied. To date, most studies report statistically derived symptom clusters among patients and fail to consider the caregivers\' experience. This study aimed to assess and characterize self-reported symptom cluster experiences in cancer patient-caregiver dyads.
METHODS: We recruited 30 patient-caregiver dyads from the outpatient oncology clinics at a Comprehensive Cancer Center in the Midwestern U.S. Participants completed web-based surveys reporting their symptom clusters at weekly intervals over 8 weeks of cancer treatment.
RESULTS: Among 48 eligible dyads, 30 (63%) agreed to participate, 29 provided data, and ≥ 80% (24 patients, 26 caregivers) completed the study. Twenty-eight patients (97%) and twenty-two caregivers (76%) reported experiencing symptoms in clusters. There was substantial variability in the symptoms reported, perceived causality, and directional relationships among symptoms, however both patients\' and caregivers\' frequently described symptom clusters with psychoneurologic components (co-occurring pain, fatigue, sleep disturbance, anxiety, depression, lack of appetite and/or cognitive disturbance). Symptom clusters were perceived to have a moderate impact on patients\' daily lives and a mild-to-moderate impact on caregivers\' daily lives.
CONCLUSIONS: Dyad members experienced and successfully self-reported symptom clusters, with psychoneurologic symptom clusters prevalent among both patients and their caregivers. Self-report of symptom cluster experiences provides unique insight relevant to clinical management. Findings provide foundational support for development and testing of dyad-based interventions to mitigate symptom clusters and their negative impact on daily life among cancer-patient caregiver dyads.

BACKGROUND: Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time.
METHODS: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads\' level of hope and the Edmonton Symptom Assessment System was used to measure patients\' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads\' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio.
RESULTS: Dyadic scores of hope and patients\' symptom burden were stable over time. The constructs of hope in dyads included \"Living one day at the time,\" \"Having inner force/strength,\" and \"Maintaining good health.\" Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one.
CONCLUSIONS: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients\' and informal caregivers\' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.

BACKGROUND: Advanced cancer significantly impacts patients\' and family caregivers\' quality of life. When patients and caregivers are supported concurrently as a dyad, the well-being of each person is optimized. Family, Outlook, Communication, Uncertainty, Symptom management (FOCUS) is a dyadic, psychoeducational intervention developed in the United States, shown to improve the well-being and quality of life of patients with advanced cancer and their primary caregivers. Originally, a nurse-delivered in-person intervention, FOCUS has been adapted into a self-administered web-based intervention for European delivery.
OBJECTIVE: The aims of this study are to (1) adapt FOCUS to the Australian context (FOCUSau); (2) evaluate the effectiveness of FOCUSau in improving the emotional well-being and self-efficacy of patients with advanced cancer and their primary caregiver relative to usual care control group; (3) compare health care use between the intervention and control groups; and (4) assess the acceptability, feasibility, and scalability of FOCUSau in order to inform future maintainable implementation of the intervention within the Australian health care system.
METHODS: FOCUS will be adapted prior to trial commencement, using an iterative stakeholder feedback process to create FOCUSau. To examine the efficacy and cost-effectiveness of FOCUSau and assess its acceptability, feasibility, and scalability, we will undertake a hybrid type 1 implementation study consisting of a phase 3 (clinical effectiveness) trial along with an observational implementation study. Participants will include patients with cancer who are older than 18 years, able to access the internet, and able to identify a primary support person or caregiver who can also be approached for participation. The sample size consists of 173 dyads in each arm (ie, 346 dyads in total). Patient-caregiver dyad data will be collected at 3 time points-baseline (T0) completed prerandomization; first follow-up (T1; N=346) at 12 weeks post baseline; and second follow-up (T2) at 24 weeks post baseline.
RESULTS: The study was funded in March 2022. Recruitment commenced in July 2024.
CONCLUSIONS: If shown to be effective, this intervention will improve the well-being of patients with advanced cancer and their family caregivers, regardless of their location or current level of health care support.
BACKGROUND: ClinicalTrials.gov NCT06082128; https://clinicaltrials.gov/study/NCT06082128.
UNASSIGNED: PRR1-10.2196/55252.

OBJECTIVE: To examine the influence of social disengagement and depressive symptoms on sleep disturbance among dementia caregiving dyads and the actor-partner interdependence nature of these influences.
METHODS: Actor-partner interdependence model through structural equation modeling for dyadic analyses.
METHODS: A total of 310 dyads of older adults with dementia and their care partners from 2 national representative studies in the United States, the National Health and Aging Trends Study (NHATS) and its companion study, the National Study of Caregiving (NSOC).
METHODS: Data from the NHATS Round 11 and NSOC IV were analyzed using descriptive statistics, Pearson correlation analysis, and the actor-partner interdependence model. Structural equation modeling was used to assess the mediation effects of depressive symptoms within the actor-partner interdependence models.
RESULTS: In the model of caregivers, social disengagement had a direct impact on sleep disturbance (β = 0.49, P < .001) and an indirect impact through depressive symptoms (β = 0.25, P < .001). In the model of older adults with dementia, social disengagement only had an indirect effect on sleep disturbance through depressive symptoms. In models examining partner effects, caregivers\' social disengagement directly influenced their care partners\' depressive symptoms (β = 0.20, P = .019), which subsequently affected caregivers\' sleep disturbance (β = 0.17, P < .001). Social disengagement (β = 0.17, P = .001) and depressive symptoms (β = 0.17, P < .001) in older adults with dementia directly impacted their caregivers\' sleep disturbance. Depressive symptoms of older adults with dementia served as multiple mediators linking one member\'s social disengagement to both their own and partner\'s sleep.
CONCLUSIONS: This study represents one of the first attempts to investigate the influencing mechanism of sleep disturbances among older adults with dementia and their informal caregivers through a dyadic perspective. The sleep disturbance of caregivers may be directly influenced by the social disengagement and depressive symptoms exhibited by both members of the dyad, whereas the sleep disturbance experienced by older adults with dementia can only be indirectly influenced by the dyad\'s social disengagement via their own depressive symptoms. Dyadic social activities targeting depressive symptoms could be designed to address sleep disturbances in dementia caregiving dyads.

BACKGROUND: Research has established the effects of romantic relationships on individuals\' morbidity and mortality. However, the interplay between relationship functioning, affective processes, and health behaviors has been relatively understudied. During the COVID-19 pandemic, relational processes may influence novel health behaviors such as social distancing and masking.
OBJECTIVE: We describe the design, recruitment, and methods of the relationships, risk perceptions, and cancer-related behaviors during the COVID-19 pandemic study. This study was developed to understand how relational and affective processes influence romantic partners\' engagement in cancer prevention behaviors as well as health behaviors introduced or exacerbated by the COVID-19 pandemic.
METHODS: The relationships, risk perceptions, and cancer-related behaviors during the COVID-19 pandemic study used online survey methods to recruit and enroll 2 cohorts of individuals involved in cohabiting romantic relationships, including 1 cohort of dyads (n=223) and 1 cohort of cancer survivors (n=443). Survey assessments were completed over 2 time points that were 5.57 (SD 3.14) weeks apart on average. Health behaviors assessed included COVID-19 vaccination and social distancing, physical activity, diet, sleep, alcohol use, and smoking behavior. We also examined relationship factors, psychological distress, and household chaos.
RESULTS: Data collection occurred between October 2021 and August 2022. During that time, a total of 926 participants were enrolled, of which about two-thirds were from the United Kingdom (n=622, 67.8%) and one-third were from the United States (n=296, 32.2%); about two-thirds were married (n=608, 66.2%) and one-third were members of unmarried couples (n=294, 32%). In cohorts 1 and 2, the mean age was about 34 and 50, respectively. Out of 478 participants in cohort 1, 19 (4%) identified as Hispanic or Latino/a, 79 (17%) as non-Hispanic Asian, 40 (9%) as non-Hispanic Black or African American, and 306 (64%) as non-Hispanic White; 62 (13%) participants identified their sexual orientation as bisexual or pansexual, 359 (75.1%) as heterosexual or straight, and 53 (11%) as gay or lesbian. In cohort 2, out of 440 participants, 13 (3%) identified as Hispanic or Latino/a, 8 (2%) as non-Hispanic Asian, 5 (1%) as non-Hispanic Black or African American, and 398 (90.5%) as non-Hispanic White; 41 (9%) participants identified their sexual orientation as bisexual or pansexual, 384 (87.3%) as heterosexual or straight, and 13 (3%) as gay or lesbian. The overall enrollment rate for individuals was 66.14% and the overall completion rate was 80.08%.
CONCLUSIONS: We discuss best practices for collecting online survey data for studies examining relationships and health, challenges related to the COVID-19 pandemic, recruitment of underrepresented populations, and enrollment of dyads. Recommendations include conducting pilot studies, allowing for extra time in the data collection timeline for marginalized or underserved populations, surplus screening to account for expected attrition within dyads, as well as planning dyad-specific data quality checks.
UNASSIGNED: DERR1-10.2196/48516.

Under ideal circumstances, recruitment of older adult-caregiver dyads to dementia research is challenging. The COVID-19 pandemic introduced additional barriers to recruitment, necessitating swift adjustments to pre-pandemic recruitment strategies and schedules. This brief research report describes the challenges, yield, and cost of recruiting older adult-caregiver dyads to an 18-month observational research study during COVID-19. The study aimed to evaluate the effectiveness of a novel in-home sensor system at identifying cognitive change in older adults with Alzheimer\'s disease and related dementias (ADRD) through background monitoring of activities of daily living (ADL). Recruitment methods included flyers distributed alongside home-delivered meals, direct mailings, publicly available brochures, community presentations, periodical advertisements, and various other strategies. Of 510 inquiries, 117 older adult-caregiver dyads were enrolled at a total cost of ~$368,000, yielding an average per dyad recruiting cost of $3,148. Distributing flyers alongside home-delivered meals produced the most dyads (n = 46, 39%) and the least non-labor costs ($24.33) per enrolled dyad. Recruitment during the pandemic exceeded the pre-COVID-19 budget, but enrollment goals were nevertheless achieved through community-based methods. Our experience illustrates the challenge of recruiting older adult-caregiver dyads to dementia research and the value of trusted community partners in recruiting this population. Our strategies and recommendations may benefit researchers who plan to recruit community-based older adults and their caregivers for future dementia research.

OBJECTIVE: Caring for a spouse with Alzheimer\'s disease (AD) can elicit considerable distress but there are also positive moments. A growing body of work has examined caregivers\' ambivalence in the care relationship and linked it to negative caregiver outcomes such as depression, but dyadic assessments of both parties\' perspectives are missing. We examined ambivalence in both people with AD and their spousal caregivers, seeking to identify the correlates and well-being outcomes of such ambivalence in this unique context.
METHODS: Participants included 72 couples managing early-stage AD. People with AD and spousal caregivers independently self-reported positive and negative relationship qualities (used to indirectly calculate their ambivalence) and life satisfaction. Caregivers reported both partners\' demographic characteristics and their spouses\' behavioral and psychological symptoms of dementia (BPSD), focusing on memory-related behaviors and psychological symptoms.
RESULTS: Path analyses revealed that the number and frequency of psychological symptoms in people with AD were positively associated with their own and caregivers\' ambivalence. Caregivers\' distress ratings of memory-related behaviors and psychological symptoms were positively associated with their ambivalence. Greater ambivalence was associated with lower life satisfaction in both spouses. BPSD directly affected both spouses\' life satisfaction but there were also indirect effects via ambivalence.
CONCLUSIONS: This study utilizes a dyadic approach to assess ambivalence in dementia care. Findings reveal the conflicting emotions that couples experience as they cope with early-stage AD, identify sources of such ambivalence, and shed light on the development of dyadic interventions that can promote positive outcomes in both partners.

OBJECTIVE: Symptom management among patients diagnosed with advanced cancer is a high priority in clinical care that often involves the support of a family caregiver. However, limited studies have examined parallel patient and caregiver symptom burden and associations with their own and each other\'s quality of life (QOL). This study seeks to identify patient and caregiver symptom clusters and investigate associations between identified clusters and demographic, clinical, and psychosocial factors (cognitive appraisals and QOL).
METHODS: This study was a secondary analysis of self-reported baseline survey data collected from a randomized clinical trial of 484 adult advanced cancer patients and their caregivers. Latent class analysis and factor analysis were used to identify symptom clusters. Bivariate statistics tested associations between symptom clusters and demographic, clinical, and psychosocial variables.
RESULTS: The most prevalent symptom for patients was energy loss/fatigue and for caregivers, mental distress. Low, moderate, and high symptom burden subgroups were identified at the patient, caregiver, and dyad level. Age, gender, race, income, chronic conditions, cancer type, and treatment type were associated with symptom burden subgroups. Higher symptom burden was associated with more negative appraisals of the cancer and caregiving experience, and poorer QOL (physical, social, emotional, functional, and overall QOL). Dyads whose caregivers had more chronic conditions were more likely to be in the high symptom burden subgroup.
CONCLUSIONS: Patient and caregiver symptom burden influence their own and each other\'s QOL. These findings reinforce the need to approach symptom management from a dyadic perspective.

BACKGROUND: The COVID-19 pandemic placed an additional mental health burden on individuals and families, resulting in widespread service access problems. Digital mental health interventions suggest promise for improved accessibility. Recent reviews have shown emerging evidence for individual use and early evidence for multiusers. However, attrition rates remain high for digital mental health interventions, and additional complexities exist when engaging multiple family members together.
OBJECTIVE: As such, this scoping review aims to detail the reported evidence for digital mental health interventions designed for family use with a focus on the build and design characteristics that promote accessibility and engagement and enable cocompletion by families.
METHODS: A systematic literature search of MEDLINE, Embase, PsycINFO, Web of Science, and CINAHL databases was conducted for articles published in the English language from January 2002 to March 2024. Eligible records included empirical studies of digital platforms containing some elements designed for cocompletion by related people as well as some components intended to be completed without therapist engagement. Platforms were included in cases in which clinical evidence had been documented.
RESULTS: Of the 9527 papers reviewed, 85 (0.89%) met the eligibility criteria. A total of 24 unique platforms designed for co-use by related parties were identified. Relationships between participants included couples, parent-child dyads, family caregiver-care recipient dyads, and families. Common platform features included the delivery of content via structured interventions with no to minimal tailoring or personalization offered. Some interventions provided live contact with therapists. User engagement indicators and findings varied and included user experience, satisfaction, completion rates, and feasibility. Our findings are more remarkable for what was absent in the literature than what was present. Contrary to expectations, few studies reported any design and build characteristics that enabled coparticipation. No studies reported on platform features for enabling cocompletion or considerations for ensuring individual privacy and safety. None examined platform build or design characteristics as moderators of intervention effect, and none offered a formative evaluation of the platform itself.
CONCLUSIONS: In this early era of digital mental health platform design, this novel review demonstrates a striking absence of information about design elements associated with the successful engagement of multiple related users in any aspect of a therapeutic process. There remains a large gap in the literature detailing and evaluating platform design, highlighting a significant opportunity for future cross-disciplinary research. This review details the incentive for undertaking such research; suggests design considerations when building digital mental health platforms for use by families; and offers recommendations for future development, including platform co-design and formative evaluation.