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.

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.

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).

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.

Family caregiving experiences with hospice lung cancer patients compared to other cancer types.

BACKGROUND: Family caregivers of cancer patients are very involved in communication with healthcare teams; however, little is known about their experiences. Limited information is known about how the type of cancer patients have impact caregiving experiences. OBJECTIVES: This study seeks to compare the caregiving experience of caregivers of hospice lung cancer patients with hospice caregivers of patients with all other cancer types. METHOD: This study is based on a secondary analysis of data generated from a parent study evaluating a behavioral intervention with caregivers of hospice cancer patients. RESULTS: When comparing caregiving experiences by patient diagnosis, significant differences were found in caregivers of hospice lung cancer demographics and experiences with caregiver-centered communication. Specifically, caregivers of lung cancer patients have significantly more trouble with exchange of information, fostering relationships, and decision making with their hospice team. CONCLUSION: More research is needed to understand the impact of lung cancer on caregiver centered communication and the necessary interventions required to address these issues.

Examining Engagement and Usability in an Online Discussion Platform for Older Adults: Findings From Pilot Studies.

Social media may facilitate older adults' ability to engage socially and explore health information, but it can present difficulties for older adults. Therefore, it is important to explore older adults' experience of usability and user engagement. We conducted two rounds of pilot studies where we used Facebook to engage older adults. We performed a mixed-methods evaluation of user engagement and usability. A directed content analysis of qualitative data from the pilot studies was used to explore engagement and perceived usability, and the Mann-Whitney U test was used to examine differences in feature usage and engagement. We analyzed qualitative data from 13 participants. Qualitative data analysis yielded themes pertaining to three main domains: user engagement , usability , and usability related to aging-related changes . In terms of user engagement and usability, participants in both pilot studies reported positive feedback on felt involvement and endurability, and the second pilot group reported more positive comments regarding perceived usefulness compared with the first pilot group. There was no statistically significant difference in usage over the two studies. The findings of this study suggest opportunities to improve older adults' experience of online discussion platforms. Considering changes that improve perceived aesthetic appeal and focused attention will be helpful.

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.

Mixed methods analysis of hospice staff perceptions and shared decision making practices in hospice.

PURPOSE: Shared decision making has been a long-standing practice in oncology and, despite a lack of research on the subject, is a central part of the philosophical foundation of hospice. This mixed methods study examined the perceptions of staff regarding shared decision making and their use of shared decision elements in hospice interdisciplinary team meetings. METHODS: The revised Leeds Attitude to Concordance scale (LatConII) was used to measure the attitudes of hospice staff toward shared decision making. Field notes and transcripts of hospice interdisciplinary team meetings that included family caregivers as participants were coded to identify 9 theory-driven shared decision making elements. The results were mixed in a matrix analysis comparing attitudes with practice. Three transcripts demonstrate the variance in the shared decision making process between hospice teams. RESULTS: Hospice staff reported overall positive views on shared decision making; however, these views differed depending on participants' age and position. The extent to which staff views were aligned with the observed use of shared decision making elements in hospice interdisciplinary team meetings varied. CONCLUSION: Policy and practice conditions can make shared decision making challenging during hospice interdisciplinary team meetings despite support for the process by staff. TRIAL REGISTRATION: This study is a sub-study of a parent study registered with clinicaltrials.gov (NCT02929108).

"It was terrible, I didn't sleep for two years": A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life.

BACKGROUND: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. AIM: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers' wellbeing in the context of caregiver health and live-in status. DESIGN: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. SETTING/PARTICIPANTS: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. RESULTS: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described "fair" or "poor" sleep quality, with "interrupted" sleep and frequent night-waking due to "on-call" "vigilance" and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p < 0.001) than live-out caregivers. Anxiety, depression, and QOL worsened as self-reported caregiver sleep quality decreased. Few caregivers had adequate support. CONCLUSION: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.

Facebook Online Support Groups for Hospice Family Caregivers of Advanced Cancer Patients: Protocol, Facilitation Skills and Promising Outcomes.

Research has demonstrated a lack of support for hospice caregivers and a higher than average level of self-reported anxiety and depression. While online support groups are gaining popularity, few protocols have been published, little research has demonstrated the skills required to facilitate, and virtually no data has explored the clinical outcomes affiliated with participation in such groups. This paper presents the preliminary experience and results of a clinical trial testing the use of online support groups designed to both educate and provide social support to caregivers of hospice cancer patients. A detailed protocol outlines educational strategies, discussion questions, and a blueprint outlining ways to engage participants. A review of field notes completed by the interventionist reveal specific facilitation skills and strategies used to engage participants. Finally, preliminary analysis of 78 participants shows the group is having a statistically significant impact on the caregiver depression.

Perceptions of and Experiences with Consumer Sleep Technologies That Use Artificial Intelligence.

This study aims to assess the perspectives and usability of different consumer sleep technologies (CSTs) that leverage artificial intelligence (AI). We answer the following research questions: (1) what are user perceptions and ideations of CSTs (phase 1), (2) what are the users' actual experiences with CSTs (phase 2), (3) and what are the design recommendations from participants (phases 1 and 2)? In this two-phase qualitative study, we conducted focus groups and usability testing to describe user ideations of desires and experiences with different AI sleep technologies and identify ways to improve the technologies. Results showed that focus group participants prioritized comfort, actionable feedback, and ease of use. Participants desired customized suggestions about their habitual sleeping environments and were interested in CSTs+AI that could integrate with tools and CSTs they already use. Usability study participants felt CSTs+AI provided an accurate picture of the quantity and quality of sleep. Participants identified room for improvement in usability, accuracy, and design of the technologies. We conclude that CSTs can be a valuable, affordable, and convenient tool for people who have issues or concerns with sleep and want more information. They provide objective data that can be discussed with clinicians.

The Effect of Digital Literacy on Participation in Social Media Clinical Trials in Cancer: Tailoring an Informed Consent Process.

Introduction: This study asked: (1) How does digital literacy influence one's decision to consent to a social media intervention study? (2) What is a brief way to assess individual digital literacy before an individual's decision to participate in a trial? and (3) How can a consent process be tailored around an individual's digital literacy level? Methods: We used an assessment tool to investigate digital literacy of those who chose to consent to a clinical trial and those who did not consent to the clinical trial but agreed to participate in a digital literacy study. Results A total of 161 hospice caregivers completed the digital literacy assessment. Older individuals and those who rated themselves as more proficient in the use of technology and social media were more likely to consent to the social media clinical trial. Conclusions: We found that asking participants to rate their technology skills and social media skills allows researchers to tailor a consent process. For those who are comfortable with technology and social media the traditional process is appropriate. For individuals that rate themselves with weaker technology and social media skills it is important that the consent process includes assurance they will receive adequate support in the use of the technology and the media. The next step is to test the assessment and tailoring of consent processes for a social media clinical trial. Clinical Trial # NCT02929108.

Older Adult Engagement With Facebook® Interventions: A Challenge for Nursing Research.

Facebook® is a popular platform for older adults, especially as they try to stay in contact with their family around the country. It is also a popular platform for hosting online support groups. The readily available, socially acceptable, and free platform holds many advantages not only for older adults but also for nurse researchers designing and implementing interventions for older adults. The literature is void of proven methods to measure individual engagement with the Facebook platform. The current article describes efforts to develop a measurement process and evaluate the impact that engagement with Facebook has on improved mental health outcomes for older adults. Scores were severely skewed and ranged from no engagement to very high engagement. Engagement differed based on sex, race, and living arrangements with patients. Further work in this area is needed if nurse researchers are to consider the role of engagement in social media interventions. [Journal of Gerontological Nursing, 48(7), 10-17.].

Domain Experts on Dementia-Care Technologies: Mitigating Risk in Design and Implementation.

There is an urgent need to learn how to appropriately integrate technologies into dementia care. The aims of this Delphi study were to project which technologies will be most prevalent in dementia care in five years, articulate potential benefits and risks, and identify specific options to mitigate risks. Participants were also asked to identify technologies that are most likely to cause value tensions and thus most warrant a conversation with an older person with mild dementia when families are deciding about their use. Twenty-one interdisciplinary domain experts from academia and industry in aging and technology in the U.S. and Canada participated in a two-round online survey using the Delphi approach with an 84% response rate and no attrition between rounds. Rankings were analyzed using frequency counts and written-in responses were thematically analyzed. Twelve technology categories were identified along with a detailed list of risks and benefits for each. Suggestions to mitigate the most commonly raised risks are categorized as follows: intervene during design, make specific technical choices, build in choice and control, require data transparency, place restrictions on data use and ensure security, enable informed consent, and proactively educate users. This study provides information that is needed to navigate person-centered technology use in dementia care. The specific recommendations participants offered are relevant to designers, clinicians, researchers, ethicists, and policy makers and require proactive engagement from design through implementation.

Internet-of-Things Smart Home Technology to Support Aging-in-Place: Older Adults' Perceptions and Attitudes.

The purpose of the current study was to examine older adults' perceptions of Internet-of-Things (IoT) smart home devices as part of a real-world feasibility study and describe what factors affect adoption of these technologies. A total of 37 community-dwelling older adults enrolled in the 2-month study. Participants chose among different IoT devices to be installed in their home for the study period. Semi-structured interviews to explore perceptions of the technology were conducted. Older adults have unique preferences for specific types of IoT devices and their functionalities. Similarly, there were different degrees of acceptability across devices. In general, older adults had a positive attitude toward IoT smart home technologies to support their health management. Emergency preparedness was a key benefit of IoT devices identified by many older adults. In addition, convenience of a voice interface provided by a smart speaker was appreciated among participants. Older adults seemed to weigh the benefits and actual need for having the devices against potential infringements on privacy. Nurses and system designers should consider ethical and practical challenges related to the interconnected services of the IoT domain for older adults. [Journal of Gerontological Nursing, 47(4), 15-21.].

Reactions to COVID-19, information and technology use, and social connectedness among older adults with pre-frailty and frailty.

The emergence of Coronavirus Disease 2019 (COVID-19) and social distancing measures has serious implications, particularly those age 65 and older. We performed a qualitative analysis of online discussion data generated by older adults with pre-frailty and frailty while subject to a state stay-at-home order. We provided participants with prompts relating to the public health emergency, collected 60 posts, and analyzed them using a general inductive analytic method. We report on: (1) the impact of the pandemic on daily life; (2) preparedness, perceptions, and behavior; (3) information and technology use; and (4) social impacts. Participants' lives of changed in many ways, including the adoption of precautionary measures and altered daily routines. Participants experienced negative emotional consequences including stress, worry, and anxiety. Information and technology use kept participants informed and connected. Participants reported varying degrees of preparedness. Our study findings provide insight into ways to support vulnerable older adults in pandemic circumstances.

Converting and expanding mobile support tools for tuberculosis treatment support: Design recommendations from domain and design experts.

BACKGROUND: Tuberculosis (TB) remains one of the top ten causes of death globally despite it being largely treatable. Poor adherence to treatment directly contributes to poor outcomes, such as, prolonged infectivity and the development of drug resistance. Mobile phone-based interventions have the potential to improve treatment outcomes. OBJECTIVE: The purpose of this study was to solicit design and domain expert feedback of a previously developed TB support intervention converted to a mobile application. METHODS: We used prototyping in iterative cycles that included integrating findings from prior formative research with endusers and soliciting feedback from design and content experts. In this project, we used low-fidelity prototype evaluation to inform the design of high-fidelity prototypes for further testing and iterative refinement. RESULTS: We received 12 survey results. Overall, the participants agreed that the functions would be easy to learn and use. Recommendations for improvement included: simplify the reporting by offering broad categories; split complex screens to be more intuitive and user friendly; modify feedback graphics to display data more clearly; incorporate instructions for each task/function to guide users and collapse the information once users had viewed it; display navigation icons on each screen and add a main menu button; have medication tracker be homepage and limit redundancies. Several potential functionalities were suggested, such as adding a notes/journal and a social feature. We were able to easily incorporate recommendations and feedback into the high-fidelity prototypes and continue testing and refinement. After we came to a stable prototype through testing, we gave the interactive prototype to our developers to program a base functioning model. CONCLUSION: The proposed design recommendations provide valuable insight to inform initial conversion of an interactive intervention to customize patient support, which include a smartphone app and a direct drug metabolite test reengineered for home use. Iteratively developing low- and high-fidelity prototypes with content and design experts to guide initial programming of a functional beta app paves the way to better explore further refinement needs and recommendations with endusers rather than using hypothetical scenarios.

Loneliness as a mediator of the impact of social isolation on cognitive functioning of Chinese older adults.

BACKGROUND AND OBJECTIVE: older adults have increased risk of social isolation, loneliness and cognitive functioning impairment, but the relationships among these factors are not conclusive. We investigated the potential mediation mechanism of loneliness on the association between social isolation and cognitive functioning among Chinese older adults within their cultural context. DESIGN: secondary analysis of the baseline wave (2011-12) of the harmonised China Health and Retirement Longitudinal Study. SETTING AND SUBJECTS: community-dwelling older adults in China (N = 7,410 participants aged 60-101 years). METHODS: we applied a multiple indicator multiple cause approach to determine whether the construct of social isolation is well defined by four indicators (social activity engagement, weekly adult children contact, caregiving for grandchildren and living alone) and used structural equation modelling to examine the direct and indirect effects among variables of interest. RESULTS: the results demonstrated that social activity engagement, weekly adult children contact and caregiving for grandchildren were significantly related to social isolation (ß = -0.26 to -0.28) (Living alone was fixed to 1 for model identification.) The indirect effect of social isolation on cognitive functioning through loneliness was significant (ß = -0.15), indicating loneliness was an important mediator. However, the direct effect of social isolation on cognitive functioning also remained significant (ß = -0.83), suggesting a partial mediation effect. CONCLUSIONS: our study highlights the mediation role of loneliness in the relationship between social isolation and cognitive functioning among Chinese older adults. The findings support the beneficial effects of maintaining social relations and coping with feelings of loneliness on older adults' cognitive functioning.

Falls and Cognitive Training 2 (FaCT2) study protocol: a randomised controlled trial exploring cognitive training to reduce risk of falls in at-risk older adults.

BACKGROUND: The primary cause of traumatic injury in older adults is fall. Recent reports suggest that cognitive function contributes significantly to fall risk. Therefore, by targeting cognitive function for intervention, we could potentially reduce the incidence of fall and injury. PRIMARY OBJECTIVE: To explore the effectiveness of a 16-week cognitive training (CT) intervention to reduce risk and incidence of fall in community-dwelling older adults at risk for fall. OUTCOMES: Primary outcome is number of falls over a 16-week period (ascertained by fall calendar method). Secondary outcomes include: change fall risk as indicated by improvement in 10 m walk and 90 s balance tests. DESIGN/METHODS: The design is a two-group randomised controlled trial. Eligible participants are older adults (aged 65-85) residing in the community who are at risk for fall based on physical performance testing. Following completion of 1-week run-in phase, participants are randomly allocated (1:2) to either a group that is assigned to attention control or to the group that receives CT intervention for a total of 16 weeks. Participants are followed for an additional 4 weeks after intervention. Mann-Whitney U test and Student's t-test will be used to examine between-group differences using intention-to-treat analyses. DISCUSSION: Limited evidence supports the potential of CT to improve cognition and gait, but no published study has evaluated whether such an intervention would reduce incidence of fall. The present trial is designed to provide initial answers to this question. CT may also improve functioning important in other activities (eg, driving), reducing overall risk of injury in elders. TRIAL REGISTRATION NUMBER: NCT03190460.

Factors influencing engagement in an online support group for family caregivers of individuals with advanced cancer.

Objective: To explore factors that influenced engagement in an online support group (OSG) for family caregivers of hospice patients with cancer.Design: Secondary qualitative data analysis.Sample: 58 family caregivers of hospice patients with advanced cancer.Methods: Template analysis of individual family caregiver interviews.Findings: Emotional isolation and caregiving downtime positively influenced engagement, while reluctance to share personal information, a short timeframe of participation in the OSG, and caregiving commitments were negatively influential. While the group facilitation and secure privacy settings of the OSG were viewed positively, reactions to the OSG platform and group tone were mixed. Information on pain and the dying process was found to be particularly engaging.Practice implications: Providers offering OSGs for family caregivers should maximize factors that promote meaningful member engagement, responding to changes in activity and tone over time.