Loneliness, psychological distress, and the moderating effect of positive aspects of caregiving among cancer caregivers.

PURPOSE: Family caregivers of patients with cancer often experience both loneliness and symptoms of psychological distress, such as anxiety and depression. The purpose of this study was to evaluate the associations between loneliness and anxiety and loneliness and depression among family caregivers of patients with cancer and to investigate whether positive aspects of caregiving can have a moderating effect on these relationships. METHODS: We conducted a cross-sectional exploratory study using baseline data from an ongoing multisite clinical trial. Multiple linear regression models were used to analyze the relationships between loneliness and psychological distress symptoms and the moderating effect of positive aspects of caregiving. Psychological distress outcomes were measured using PROMIS Short Forms (8a) for Anxiety and Depression. RESULTS: We identified a significant association between loneliness and symptoms of both anxiety and depression. Positive aspects of caregiving did not significantly moderate the relationship between loneliness and depression or loneliness and anxiety. CONCLUSION: The results of this study shed new light on the relationship between loneliness and symptoms of psychological distress experienced by family caregivers of cancer patients, providing a better understanding of the impact that recognition of positive aspects of caregiving has on the association between loneliness and psychological distress symptoms. Our findings emphasize the importance of targeting family caregiver loneliness in order to reduce psychological distress among family caregivers of cancer patients.

Interpretability Study for Long Interview Transcripts from Behavior Intervention Sessions for Family Caregivers of Dementia Patients.

Mental health challenges are significant global public health concerns, affecting millions of people and impacting individuals, families, and communities alike. Therapists play a crucial role in supporting those with mental health issues by providing emotional, practical, and financial assistance, as well as facilitating access to treatment and services. Utilizing one-to-one interviews is an effective approach that yields valuable transcripts for further study. In this paper, we focus on interview transcripts between therapists and caregivers with family members suffering from dementia. We propose a method to efficiently handle long interview transcripts for classification. Then we employ the Shapley-value based interpretability technique to identify important contents that significantly contribute to classification results and build a corpus containing sentences potentially beneficial to the therapy. This approach offers valuable insights for enhancing the treatment of mental health issues.

Does Family Functioning Matter? Understanding the Relationship Between Family Interactions and Depressive Symptoms for Caregivers of Cancer Patients.

BACKGROUND: Caregivers of cancer patients are at increased risk of depression and other health challenges. There is limited understanding of the role of the caregiver's own family members in promoting or discouraging mental wellbeing. Family functioning conceptualizes how family members interact to promote a positive family environment and has the potential to impact caregiver mental health. The purpose of this study is to assess the association between family interactions and depressive symptoms among family caregivers of cancer patients. METHODS: Secondary analysis of baseline data from an NIH-funded randomized control trial of family caregivers of cancer patients recruited from academic palliative care clinics at three sites (2 Midwest, 1 East). We tested for an association between caregiver responses to the Family Quality of Life in Dementia-Family Interactions Subscale and Patient-Reported Outcomes Measurement Information System Depression Short Form 8A using a block-wise approach to linear modeling. RESULTS: A total of 246 caregivers were included in analysis; caregivers were mostly White (82%), not Hispanic or Latina/o (96%), and female (65%), with an average age of 55 years. Overall, participants had high family interactions (mean 57.7, sd 11.7) and an average depressive symptom burden (t-score 52.4, SD 8.57). Family interactions was significantly negatively associated with depressive symptoms (b = -.163, se = .057) when accounting for relevant covariates. CONCLUSION: Family caregivers with more positive family interactions are likely to have fewer depressive symptoms, suggesting family functioning may play a key role in bolstering family caregiver mental health and wellbeing.

Accessibility, Relevance, and Impact of a Symptom Monitoring Tool for Home Hospice Care: Theory Elaboration and Qualitative Assessment.

BACKGROUND: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. OBJECTIVE: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. METHODS: We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. RESULTS: Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. CONCLUSIONS: The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.

Determining the Innovativeness of Nurses Who Engage in Activities That Encourage Innovative Behaviors.

BACKGROUND: We sought to understand the innovativeness of nurses engaging in innovative behaviors and quantify the associated characteristics that make nurses more able to innovate in practice. We first compared the innovativeness scores of our population; then we examined those who self-identified as an innovator versus those who did not to explore differences associated with innovativeness between these groups. METHODS: A cross-sectional survey study of nurses in the US engaging in innovative behaviors was performed. We performed an exploratory factor analysis (EFA) to determine the correlates of innovative behavior. RESULTS: Three-hundred and twenty-nine respondents completed the survey. Respondents who viewed themselves as innovators had greater exposure to HCD/DT workshops in the past year (55.8% vs. 36.6%, p = 0.02). The mean innovativeness score of our sample was 120.3 ± 11.2 out of a score of 140. The mean innovativeness score was higher for those who self-identified as an innovator compared with those who did not (121.3 ± 10.2 vs. 112.9 ± 14.8, p =< 0.001). The EFA created four factor groups: Factor 1 (risk aversion), Factor 2 (willingness to try new things), Factor 3 (creativity and originality) and Factor 4 (being challenged). CONCLUSION: Nurses who view themselves as innovators have higher innovativeness scores compared with those who do not. Multiple individual and organizational characteristics are associated with the innovativeness of nurses.

Usability testing of a mobile health application to support individuals with active tuberculosis: a mixed methods study.

Poor adherence to tuberculosis (TB) treatment leads to further disease transmission, worsened outcomes, and the development of drug resistance. Digital adherence technologies may facilitate a more patient-centered approach for improving TB treatment outcomes than current strategies. The objective of this study was to evaluate and explore improving usability of the TB Treatment Support Tools (TB-TST) mobile application. We used an iterative convergent mixed-method design consisting of two quantitative surveys and a qualitative think-aloud interview. Testing was conducted in three testing cycles consisting of a total of 16 interviews and 26 surveys. Results were thematically analyzed and reported to the development team during weekly team meetings. Participants rated the TB-TSTs application as having high usability and the iterative approach resulted in several refinements to the application in response to participant feedback. These refinements were well received during qualitative interviews but did not result in a statistically significant improvement in usability testing scores between cycles. Using an iterative convergent mixed-method design was an effective method for refining our mHealth application. Data collected from think-aloud interviews, the MAUQ, and the Health-ITUES identified key areas of application design that needed refinement.

Artificial Intelligence and Technology Collaboratories: Innovating aging research and Alzheimer's care.

This perspective outlines the Artificial Intelligence and Technology Collaboratories (AITC) at Johns Hopkins University, University of Pennsylvania, and University of Massachusetts, highlighting their roles in developing AI-based technologies for older adult care, particularly targeting Alzheimer's disease (AD). These National Institute on Aging (NIA) centers foster collaboration among clinicians, gerontologists, ethicists, business professionals, and engineers to create AI solutions. Key activities include identifying technology needs, stakeholder engagement, training, mentoring, data integration, and navigating ethical challenges. The objective is to apply these innovations effectively in real-world scenarios, including in rural settings. In addition, the AITC focuses on developing best practices for AI application in the care of older adults, facilitating pilot studies, and addressing ethical concerns related to technology development for older adults with cognitive impairment, with the ultimate aim of improving the lives of older adults and their caregivers. HIGHLIGHTS: Addressing the complex needs of older adults with Alzheimer's disease (AD) requires a comprehensive approach, integrating medical and social support. Current gaps in training, techniques, tools, and expertise hinder uniform access across communities and health care settings. Artificial intelligence (AI) and digital technologies hold promise in transforming care for this demographic. Yet, transitioning these innovations from concept to marketable products presents significant challenges, often stalling promising advancements in the developmental phase. The Artificial Intelligence and Technology Collaboratories (AITC) program, funded by the National Institute on Aging (NIA), presents a viable model. These Collaboratories foster the development and implementation of AI methods and technologies through projects aimed at improving care for older Americans, particularly those with AD, and promote the sharing of best practices in AI and technology integration. Why Does This Matter? The National Institute on Aging (NIA) Artificial Intelligence and Technology Collaboratories (AITC) program's mission is to accelerate the adoption of artificial intelligence (AI) and new technologies for the betterment of older adults, especially those with dementia. By bridging scientific and technological expertise, fostering clinical and industry partnerships, and enhancing the sharing of best practices, this program can significantly improve the health and quality of life for older adults with Alzheimer's disease (AD).

Family Caregiver Communication and Perceptions of Involvement in Hospice Care.

Background: The burden of caregiving for family members is significant and becomes particularly challenging at end of life, with negative effects on mental health, including anxiety and depression. Research has shown caregivers need better communication with their health care team. Objectives: To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care. Methods: The purpose of this secondary analysis of data collected from a U.S.-based cluster crossover randomized trial was to evaluate whether caregiver-centered communication (Caregiver-Centered Communication Questionnaire) is associated with a caregiver's perceptions of involvement in care (Perceived Involved in Care Scale). A block-wise approach was used to estimate linear models, which were created using total scores and subscale scores. Results: Caregiver-centered communication was positively associated with perceptions of involvement in care. Conclusion: Skilled communication between hospice clinicians and family caregivers is critical in helping family members perception they are involved in the care of their loved one. There could be similar benefit in caregiver-centered communication during cancer treatment as well.

Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences.

Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for care-recipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers' perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, "local" hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs.

Pain Management Education for Rural Hospice Family Caregivers: A Pilot Study With Embedded Implementation Evaluation.

BACKGROUND: Assessing and managing hospice patients' pain is a common source of anxiety among hospice family caregivers (HFCGs), especially caregivers in rural communities who face special challenges including distance, limited access, and concerns about opioid misuse. OBJECTIVE: To pilot test Ready2Care, a pain management education intervention for rural HFCGs. We sought to determine whether there was a signal of benefit for clinically-relevant outcomes and to identify contextual factors pertinent to conducting a future randomized clinical trial of Ready2Care. METHODS: We conducted a multi-method, single-arm study, enabling completion of paired t-tests comparing pre- and post-intervention measures of caregiver anxiety, pain management self-efficacy, barriers to pain management, and reports of patient pain intensity and corresponding patient and caregiver distress. We concurrently conducted an embedded implementation evaluation via calculation of descriptive statistics (recruitment and retention data) and directed content analysis of brief caregiver interviews. RESULTS: Twenty-seven (n = 27) HFCGs participated; 15 completed the study. Among completers, significant improvement was observed in patient pain intensity (average 1.4 points decrease on 0-10 scale) and in overall pain experience. No statistically significant changes were detected in caregiver anxiety, barriers to pain management, or pain management self-efficacy. Facilitators to successful conduct of a future clinical trial included high acceptability of Ready2Care, driven by its perceived clarity and relevance to caregivers' concerns. Barriers included lower-than-anticipated accrual and an attrition rate of nearly 44%. CONCLUSION: A multisite clinical trial of Ready2Care is warranted; however, its success may require more effective recruitment and retention strategies for rural caregiver participants.

Smart Speaker and ICT Use in Relationship With Social Connectedness During the Pandemic: Loneliness and Social Isolation Found in Older Adults in Low-Income Housing.

BACKGROUND AND OBJECTIVES: Social well-being of older adults living in low-income housing was disproportionately affected by the coronavirus disease 2019 pandemic. We explored low-income residents' experiences of social isolation and loneliness and strategies to remain socially connected during the pandemic. RESEARCH DESIGN AND METHODS: As part of a larger, 3-phase user-centered design study, we conducted a qualitative study using focus groups to gain insights into social isolation experiences and the role of information and communication technologies (ICTs), including smart speakers, in social connectedness (N = 25, 76% African American). We also collected survey data to describe social isolation, loneliness, and current ICT use in the sample. Participants included both smart speaker users and nonusers. RESULTS: Experiences of social isolation and loneliness varied by participants' sociodemographic characteristics and previous experiences with smart speakers. Qualitative analysis showed participants demonstrated coping strategies developed during the pandemic to adapt to new norms of connecting with others, including technology-enabled social interactions. Participants expressed a strong desire to build community together in their facilities and highlighted the potential role of smart speakers in making meaningful social connections, encompassing safety checks to have a means for emergencies, and providing a virtual companion. Access, digital literacy, training, security, and privacy issues were discussed as factors affecting their adoption of new ICT for enhanced social connectedness. DISCUSSION AND IMPLICATIONS: This study highlights the importance of understanding the unique social isolation experience, demographics, and social determinants of health of low-income residents to develop ICT-based interventions for social connectedness.

Characteristics of Telehealth Interventions for Adult Patients with Chronic Pain and Family Care Partners.

Objectives: This review aimed to assess characteristics of telehealth in pain management for adult patients with chronic pain and their family care partners and review current evidence of the effectiveness of telehealth for pain management. Based on the Revised Symptom Management model, this review identified types of chronic pain management strategies and symptom management outcomes delivered by telehealth. Methods: We conducted a systematic review of four electronic databases, PubMed, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, and Embase, using combinations of keywords, including "telehealth," "caregivers," and "pain." Only interventions delivered online, including websites, mobile applications, phone calls, and videoconferencing, were included. To accurately characterize the features of each telehealth pain intervention, we employed a standardized checklist. Additionally, a summary table of the evidence was created. Results: We analyzed 17 studies that met the inclusion criteria, of which 14 were randomized controlled trials, 1 was a cohort study, and 2 were qualitative cohort studies. We grouped interventions based on content of the intervention for pain management (education, psychotherapy, reporting and consultation, and multicomponent intervention). The quality rating of studies was mostly moderately strong. Findings of interventions' effectiveness were showing heterogenous effects on variables, possibly due to different pain measurements and varying follow-up times. Significance of Results: Telehealth interventions can potentially increase access to care for patients with chronic pain and their families in a limited resource area. Telehealth technology is a feasible tool that may enhance clinicians' pain management efforts for patients with chronic pain and their family care partners. The results of this review can be used to guide telehealth pain assessment and evaluation for care partners, clinicians, and researchers and inform the design of future telehealth systems.

American Geriatrics Society response to the World Falls Guidelines.

Falls are a major cause of preventable death, injury, and reduced independence in adults aged 65 years and older. The American Geriatrics Society and British Geriatrics Society (AGS/BGS) published a guideline in 2001, revised in 2011, addressing common risk factors for falls and providing recommendations to reduce fall risk in community-dwelling older adults. In 2022, the World Falls Guidelines (WFG) Task Force created updated, globally oriented fall prevention risk stratification, assessment, management, and interventions for older adults. Our objective was to briefly summarize the new WFG, compare them to the AGS/BGS guideline, and offer suggestions for implementation in the United States. We reviewed 11 of the 12 WFG topics related to community-dwelling older adults and agree with several additions to the prior AGS/BGS guideline, including assessment and intervention for hearing impairment and concern for falling, assessment and individualized exercises for older adults with cognitive impairment, and performing a standardized assessment such as STOPPFall before prescribing a medication that could potentially increase fall risk. Notable areas of difference include: (1) AGS continues to recommend screening all patients aged 65+ annually for falls, rather than just those with a history of falls or through opportunistic case finding; (2) AGS recommends continued use of the Timed Up and Go as a gait assessment, rather than relying on gait speed; and (3) AGS recommends clinical judgment on whether or not to check an ECG for those at risk for falling. Our review and translation of the WFG for a US audience offers guidance for healthcare and other providers and teams to reduce fall risk in older adults.

Advance care planning and outpatient visits among older adults across cognitive levels.

Advance care planning (ACP) can help reduce end-of-life care challenges for persons with Alzheimer's disease and related dementia and their care partners. Building on our previous work, we examined the impact of ACP on outpatient/doctor visits in older adults with dementia/impaired cognition and normal cognition. Using datasets from the 2014 Health and Retirement Study (HRS), we conducted a cross-sectional study of 17,698 participants aged 51 years and older. Our analyses included survey descriptive and logistic regression procedures. Our findings indicated that having at least one ACP measure was significantly associated with a higher mean number of outpatient visits in both cognition groups. Based on our findings, we recommend considering healthcare access and use as an intervening variable in future ACP research.

Can Artificial Intelligence Aid Diagnosis by Teleguided Point-of-Care Ultrasound? A Pilot Study for Evaluating a Novel Computer Algorithm for COVID-19 Diagnosis Using Lung Ultrasound.

With the 2019 coronavirus disease (COVID-19) pandemic, there is an increasing demand for remote monitoring technologies to reduce patient and provider exposure. One field that has an increasing potential is teleguided ultrasound, where telemedicine and point-of-care ultrasound (POCUS) merge to create this new scope. Teleguided POCUS can minimize staff exposure while preserving patient safety and oversight during bedside procedures. In this paper, we propose the use of teleguided POCUS supported by AI technologies for the remote monitoring of COVID-19 patients by non-experienced personnel including self-monitoring by the patients themselves. Our hypothesis is that AI technologies can facilitate the remote monitoring of COVID-19 patients through the utilization of POCUS devices, even when operated by individuals without formal medical training. In pursuit of this goal, we performed a pilot analysis to evaluate the performance of users with different clinical backgrounds using a computer-based system for COVID-19 detection using lung ultrasound. The purpose of the analysis was to emphasize the potential of the proposed AI technology for improving diagnostic performance, especially for users with less experience.

Depressive Symptoms in Caregivers of Hospice Cancer Patients.

Objectives: Family members and close friends provide countless hours of care for patients enrolled in hospice care. They do so without pay, often sacrificing their own financial well-being and health in the process. This study asks 4 research questions: (1) What is the prevalence and severity of depressive symptoms among caregivers of hospice cancer patients? (2) What demographic and contextual factors (such as relationship with patient) are related to the severity of depressive symptoms among caregivers of hospice cancer patients? (3) Are caregiver quality of life and caregiver burden associated with depressive symptoms? and (4) Is baseline depression associated with change in depression over time? Methods: This was a secondary analysis of data collected in a cluster randomized controlled trial. Results: Thirty-five percent of caregivers reported depressive symptoms of moderate or greater severity. These depressive symptoms were found to increase depending on the relationship of the caregiver to the patient. Caregivers with higher reported burden and lower reported quality of life were also found to have higher depressive symptoms. Significance of Results: Hospice agencies are encouraged to assess caregiver depressive symptoms and have protocols in place to assist caregivers with high depressive symptoms.

Resilience-enhancing interventions for family caregivers: A systematic review.

OBJECTIVES: To synthesize interventions designed to enhance resilience in family caregivers (FCs). METHODS: Electronic databases including PubMed, CINAHL, PsycINFO, and Scopus, were searched using index and keyword methods for articles published before January 2020. The review process followed the PRISMA review guidelines. Study quality was assessed using the Mixed Methods Appraisal Tool (MMAT). RESULTS: Six studies (seven articles) were included in this review. Quantitative evidence supports the benefits of psychoeducation, mindfulness-based intervention, and cognitive behavioral therapy (CBT)-based intervention but not expressive writing in improving in FCs' resilience. Four of the six included studies were randomized controlled trials. All included studies only met 40% to 60% of the MMAT criteria, indicating low to moderate levels of study quality. CONCLUSION: This review showed emerging evidence that psychoeducation, mindfulness-based intervention, and CBT-based intervention may improve caregiver resilience. However, it remains unclear which intervention and what dosage is the most effective in promoting FCs' resilience. Due to the small number of relevant studies and a low-to-moderate level of overall study quality, more rigorous clinical trials are needed to strengthen the current limited evidence base for FC resilience interventions.

Preliminary Efficacy of Let's Talk Tech: Technology Use Planning for Dementia Care Dyads.

Background and Objective: Care partners of people living with dementia require support to knowledgeably navigate decision making about how and when to use monitoring technologies for care purposes. We conducted a pilot study of a novel self-administered intervention, "Let's Talk Tech," for people living with mild dementia and their care partners. This paper presents preliminary efficacy findings of this intervention designed to educate and facilitate dyadic communication about a range of technologies used in dementia care and to document the preferences of the person living with dementia. It is the first-of-its-kind decision-making and planning tool with a specific focus on technology use. Research Design and Methods: We used a 1-group pretest-post-test design and paired t tests to assess change over 2 time periods in measures of technology comprehension, care partner knowledge of the participant living with mild Alzheimer's disease's (AD) preferences, care partner preparedness to make decisions about technology use, and mutual understanding. Thematic analysis was conducted on postintervention interview transcripts to elucidate mechanisms and experiences with Let's Talk Tech. Results: Twenty-nine mild AD dementia care dyads who live together completed the study. There was statistically significant improvement with medium and large effect sizes on outcome measures of care partners' understanding of each technology, care partners' perceptions of the person living with dementia's understanding of each technology, knowledge of the person living with dementia's preferences, decision-making preparedness, and care partners' feelings of mutual understanding. Participants reported that it helped them have important and meaningful conversations about using technology. Discussion and Implications: Let's Talk Tech demonstrated promising preliminary efficacy on targeted measures that can lead to informed, shared decision making about technologies used in dementia care. Future studies should assess efficacy with larger samples and more diverse sample populations in terms of race, ethnicity, and dementia type.

When Family Life Contributes to Cancer Caregiver Burden in Palliative Care.

The difficulties of caring for a family member with advanced cancer are well documented. Support from a caregiver's social network-especially other family-is vital to reducing caregiver burden and psychological distress. However, the family environment is not always supportive as reports of family conflict and dissatisfaction with support are common. Despite knowing that family relationships are complex, little is known about the types of family stress that caregivers of advanced cancer patients face in their daily lives. To address this gap, researchers applied concepts from the double ABCX model to conduct a reflexive thematic analysis of interviews with 63 caregivers of cancer patients receiving outpatient palliative care. Four themes of family stress were identified: failed support, relational tensions, denial, and additional care work. Findings inform clinical assessment and caregiver intervention development by revealing the importance of measuring the mundane machinations of family life for caregivers of adult cancer patients.