Unraveling the multiple chronic conditions patterns among people with Alzheimer's disease and related dementia: A machine learning approach to incorporate synergistic interactions.

INTRODUCTION: Most people with Alzheimer's disease and related dementia (ADRD) also suffer from two or more chronic conditions, known as multiple chronic conditions (MCC). While many studies have investigated the MCC patterns, few studies have considered the synergistic interactions with other factors (called the syndemic factors) specifically for people with ADRD. METHODS: We included 40,290 visits and identified 18 MCC from the National Alzheimer's Coordinating Center. Then, we utilized a multi-label XGBoost model to predict developing MCC based on existing MCC patterns and individualized syndemic factors. RESULTS: Our model achieved an overall arithmetic mean of 0.710 AUROC (SD = 0.100) in predicting 18 developing MCC. While existing MCC patterns have enough predictive power, syndemic factors related to dementia, social behaviors, mental and physical health can improve model performance further. DISCUSSION: Our study demonstrated that the MCC patterns among people with ADRD can be learned using a machine-learning approach with syndemic framework adjustments. HIGHLIGHTS: Machine learning models can learn the MCC patterns for people with ADRD. The learned MCC patterns should be adjusted and individualized by syndemic factors. The model can predict which disease is developing based on existing MCC patterns. As a result, this model enables early specific MCC identification and prevention.

The efficacy of web or mobile-based interventions to alleviate emotional symptoms in people with advanced cancer: a systematic review and meta-analysis.

PURPOSE: This review aims to critically evaluate the efficacy of web or mobile-based (WMB) interventions impacting emotional symptoms in patients with advanced cancer. METHOD: Articles published from 1991 to 2019 were identified using PubMed, PsycINFO, CINAHL, and Scopus. Only interventions involving adults with advanced cancer using a WMB intervention to manage emotional symptoms were included. Risk of bias was assessed using ROBINS-I and ROB2 tools. Studies that reported mean symptom scores were pooled using a random-effects model, and standardized mean difference (SMD) and 95% CIs were calculated. RESULTS: Twenty-three of the 1177 screened studies met the inclusion criteria, and a total sample of 2558 patients were included. The sample was 57% female, and 33% had advanced cancer with mean age of 57.15 years. Thirteen studies evaluated anxiety, nineteen evaluated depression, and eleven evaluated distress. Intervention components included general information, tracking, communication, multimedia choice, interactive online activities, tailoring/feedback, symptom management support content, and self-monitoring. Overall pooled results showed that WMB interventions' effects on decreasing anxiety (SMD - 0.20, - 0.45 to 0.05, I2 = 72%), depression (SMD - 0.10, - 0.30 to 0.11, I2 = 73%), and distress (SMD - 0.20, - 0.47 to 0.06, I2 = 60%) were not significant for randomized controlled trials (RCTs). In contrast, WMB interventions significantly decreased symptoms of anxiety (p = .002) in a sub-group analysis of non-RCTs. CONCLUSION: This meta-analysis demonstrated that WMB interventions were not efficacious in alleviating emotional symptoms in adults with advanced cancer. Considering the diversity of interventions, the efficacy of WMB interventions and its impacts on emotional symptoms should be further explored.

Web and mobile-based symptom management interventions for physical symptoms of people with advanced cancer: A systematic review and meta-analysis.

BACKGROUND: Symptom management is a critical aspect of comprehensive palliative care for people with advanced cancer. Web and mobile-based applications are promising e-Health modalities that can facilitate timely access to symptom management interventions for this population. AIM: To evaluate the efficacy of web and mobile-based symptom management interventions in alleviating physical symptom burden in people with advanced cancer. DESIGN: A systematic review and meta-analysis was conducted. PROSPERO ID = CRD42020155295. DATA SOURCES: We searched databases including PubMed, PsycINFO, and CINAHL from 1991 until 2019. Inclusion criteria were: adults with advanced cancer, web or mobile-based interventions targeting symptom management, and report of physical symptom data. Risk of bias was assessed using the ROBINS-I and RoB2. Using RevMan, standardized mean difference (SMD) and 95% confidence intervals were calculated. Heterogeneity was assessed using the I2 statistic. An assessment of interventions was conducted by evaluating the delivery mode, duration, and evaluation of application feature and theoretical elements. RESULTS: A total of 19 studies are included in the systematic review and 18 in the meta-analysis. Majority of the studies were deemed to have high risk of bias. Most of the interventions used a web-application for delivering their education (n = 17). While the interventions varied regarding duration and content, they were mainly guided by a symptom management theory. Web and mobile-based interventions significantly improved the overall physical symptom burden (SMD = -0.18; 95% CI = -0.28 to -0.09; I2 = 0%; p = 0.0002). CONCLUSIONS: Web and mobile-based intervention are efficacious in decreasing the overall physical symptom burden in people with advanced cancer.

Psychological Impacts and Ways of Coping Reported by Spousal Caregivers of Hematopoietic Cell Transplant Recipients: A Qualitative Analysis.

Allogeneic hematopoietic cell transplantation (HCT) is a demanding treatment with well-established medical and psychosocial sequelae. Impacts on significant others are tremendous. Using an unfiltered qualitative approach, we asked spouses (n = 15) of HCT recipients to talk about their thoughts and feelings regarding the transplantation and their role as caregiver. Recordings were transcribed and independently coded to identify recurrent patterns. Caregivers mentioned both negative and positive psychological impacts of HCT, but the number of negative impacts was greater: 164 versus 34 instances. The most frequently mentioned negative psychological impacts were anxiety/worry (30 instances), fear (20 instances), feeling overloaded/overwhelmed (19 instances), and uncertainty (17 instances). Other emergent categories were roles/responsibilities (49 instances) such as parenting, work, and treatment-related tasks, and coping strategies (55 instances). The latter included both adaptive and maladaptive strategies (75% and 25%, respectively). Despite the preponderance of negatively toned thoughts and feelings, signs of adjustment emerged, with mentions of positive psychological states, such as optimism and gratitude, and adaptive coping strategies, such as active coping, use of emotional support, and self-care. Interventions intended to facilitate adaptation to the HCT experience should involve strategies to help caregivers manage symptoms of distress and promote adaptive coping.

Health care innovations across practice and academia: A theoretical framework.

BACKGROUND: An innovation scholarly interest group used the Jobs to Be Done Theory from the business literature to provide insight into the solution-focused progress that nurses are trying to make in challenging situations. PURPOSE: This article presents a theoretical framework for understanding the progress nurses are trying to make through health care innovations across both practice and academic environments. METHOD: This was a qualitative descriptive study using directed content analysis. We used the Jobs to Be Done Theory to guide the development of the semistructured questionnaire and the interpretation of findings. FINDINGS: A theoretical framework of nursing innovations was derived to summarize and visually display the pathways and linkages of challenges, innovations, and impact domains of nursing innovations. Situations and opportunities arise within the context of interconnectedness and can lead to health care innovations in care delivery, patient care interventions, role transitions, research and translational methods, communication and collaboration, technology and data, teaching methods, and processes to improve care. DISCUSSION: This theoretical framework offers insight into the dynamic interactions of academic-practice partnerships for innovation. Workplace situations are interconnected and can result in needed innovations designed to impact care delivery.

Exploring the Challenges that Family Caregivers Faced When Caring for Hospice Patients with Heart Failure.

Although patients with heart disease comprise the second largest diagnostic group in hospice care, the challenges faced by family caregivers of hospice patients with heart failure are poorly understood and often go unaddressed. This study explored the challenges and needs of family caregivers of adults with advanced heart failure receiving hospice care in the home. The baseline quantitative and qualitative data from 28 family caregivers' participation in a large-scale hospice clinical trial of a problem-solving therapy intervention were analyzed. The quantitative data showed that family caregivers were mildly anxious and had worse financial and physical quality of life than their social and emotional quality of life. The qualitative data showed that caregiver challenges were related to patient care and symptom management, inadequate social support, communication issues, and financial concerns. The results provide insight to hospice social workers and researchers to develop practical tools that can be used in routine care to evaluate family caregivers' needs comprehensively.

The Enhancing Connections-Telephone study: a pilot feasibility test of a cancer parenting program.

PURPOSE: The purposes of the study were to (1) test the short-term impact of a telephone-delivered cancer parenting education program, the Enhancing Connections-Telephone (EC-T) Program, on maternal anxiety, depressed mood, parenting competencies, and child behavioral-emotional adjustment and (2) compare those outcomes with outcomes achieved from an in-person delivery of the same program (EC). METHODS: Thirty-two mothers comprised the sample for the within-group design and 77 mothers for the between-group design. Mothers were eligible if they had one or more dependent children and were recently diagnosed with stages 0-III breast cancer. Mothers in both groups received five intervention sessions at 2-week intervals from a patient educator using a fully scripted intervention manual. RESULTS: Outcomes from the within-group analysis revealed significant improvements on maternal anxiety, parenting competencies, and the child's behavioral-emotional functioning. Outcomes from the between-group analysis showed the EC-T did as well or better than EC in positively affecting maternal anxiety, depressed mood, parenting competencies, and the child's behavioral-emotional adjustment. Furthermore, the EC-T had a significantly greater impact than the EC on maternal confidence in helping their family and themselves manage the cancer's impact and in staying calm during emotionally charged conversations about the breast cancer with their child. CONCLUSIONS: Regardless of the channel of delivery, the Enhancing Connections Program has the potential to positively affect parenting competencies and behavioral-emotional adjustment in mothers and dependent children in the first year of stages 0-III maternal breast cancer. Its positive impact from telephone delivery holds promise for sustainability.

Pilot testing a digital pet avatar for older adults.

Social isolation in older adults is a major public health concern. An embodied conversational agent (ECA) has the potential to enhance older adults' social interaction. However, little is known about older adults' experience with an ECA. In this paper, we conducted a pilot study to examine the perceived acceptance and utility of a tablet-based conversational agent in the form of an avatar (termed "digital pet") for older adults. We performed secondary analysis of data collected from a study that employed the use of a digital pet in ten older adults' homes for three months. Most of the participants enjoyed the companionship, entertainment, reminders, and instant assistance from the digital pet. However, participants identified limited conversational ability and technical issues as system challenges. Privacy, dependence, and cost were major concerns. Future applications should maximize the agent's conversational ability and the system's overall usability. Our results can inform future designs of conversational agents for older adults, which need to include older adults as system co-designers to maximize usability and acceptance.

Supporting the Health and Well-Being of Caregivers of Persons with Pain Strategies to address stress and improve self-care.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses. Cite this article as: Tonkikh, O., et al. Supporting the Health and Well-Being of Caregivers of Persons with Pain. Am J Nurs 2023; 123 (6): 55-61.

Supporting the Health and Well-Being of Caregivers of Persons with Pain.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Digital health interventions to support family caregivers: An updated systematic review.

Objective: Chronic diseases are the leading causes of death and disability in the U.S., and disease management largely falls onto patients' family caregivers. The long-term burden and stress of caregiving negatively impact caregivers' well-being and ability to provide care. Digital health interventions have the potential to support caregivers. This article aims to provide an updated review of interventions using digital health tools to support family caregivers and the scope of the Human-Centered Design (HCD) approaches. Methods: We conducted a systematic search on July 2019 and January 2021 in PubMed, CINAHL, Embase, Cochrane Library, PsycINFO, ERIC, and ACM Digital Library, limiting to 2014-2021 to identify family caregiver interventions assisted by modern technologies. The Mixed Methods Appraisal Tool and the Grading of Recommendations Assessment, Development and Evaluation were used to evaluate the articles. Data were abstracted and evaluated using Rayyan and Research Electronic Data Capture. Results: We identified and reviewed 40 studies from 34 journals, 10 fields, and 19 countries. Findings included patients' conditions and relationships with family caregivers, how the technology is used to deliver the intervention, HCD methods, theoretical frameworks, components of the interventions, and family caregiver health outcomes. Conclusion: This updated and expanded review revealed that digitally enhanced health interventions were robust at providing high-quality assistance and support to caregivers by improving caregiver psychological health, self-efficacy, caregiving skills, quality of life, social support, and problem-coping abilities. Health professionals need to include informal caregivers as an essential component when providing care to patients. Future research should include more marginalized caregivers from diverse backgrounds, improve the accessibility and usability of the technology tools, and tailor the intervention to be more culturally and linguistically sensitive.

Family Caregivers' Challenges in Cancer Pain Management for Patients Receiving Palliative Care.

CONTEXT: Family caregivers (FCs) of cancer patients play a crucial role in managing their care partner's pain, but little research has examined FCs' specific challenges regarding the provision of pain management (PM) to cancer patients receiving palliative care. OBJECTIVES: To determine the demographic and clinical characteristics of FCs who encounter challenges in PM and to elucidate the specific challenges that FCs face when managing pain for their care partner with cancer. METHODS: We conducted a secondary analysis of 40 interview transcripts of FCs who were caring for persons with cancer. Interviews were audio-recorded, transcribed verbatim, and analyzed using deductive thematic analysis. RESULTS: The three major identified challenges to PM for FCs of persons with cancer were: (1) communication and teamwork issues, (2) caregiver-related issues, and (3) patient-related issues. Communication and teamwork issues encompassed caregivers' receipt of inadequate information regarding PM, and inappropriate and ineffective communication from the healthcare team. Caregiver issues pertained to caregivers' fear and beliefs, concurrent responsibilities, and lack of pain-related knowledge and skills. Patient issues related to their own fear and beliefs, psychological and physiological well-being, adherence to medications, and reluctance to report pain. CONCLUSION: Findings of this study have implications for future research and practice related to cancer PM in palliative care. Results suggest the need for FC training in PM as well as clear clinical practice guidelines and resources to help providers prepare, educate, and communicate with FCs regarding PM.

Using artificial intelligence to improve pain assessment and pain management: a scoping review.

CONTEXT: Over 20% of US adults report they experience pain on most days or every day. Uncontrolled pain has led to increased healthcare utilization, hospitalization, emergency visits, and financial burden. Recognizing, assessing, understanding, and treating pain using artificial intelligence (AI) approaches may improve patient outcomes and healthcare resource utilization. A comprehensive synthesis of the current use and outcomes of AI-based interventions focused on pain assessment and management will guide the development of future research. OBJECTIVES: This review aims to investigate the state of the research on AI-based interventions designed to improve pain assessment and management for adult patients. We also ascertain the actual outcomes of Al-based interventions for adult patients. METHODS: The electronic databases searched include Web of Science, CINAHL, PsycINFO, Cochrane CENTRAL, Scopus, IEEE Xplore, and ACM Digital Library. The search initially identified 6946 studies. After screening, 30 studies met the inclusion criteria. The Critical Appraisals Skills Programme was used to assess study quality. RESULTS: This review provides evidence that machine learning, data mining, and natural language processing were used to improve efficient pain recognition and pain assessment, analyze self-reported pain data, predict pain, and help clinicians and patients to manage chronic pain more effectively. CONCLUSIONS: Findings from this review suggest that using AI-based interventions has a positive effect on pain recognition, pain prediction, and pain self-management; however, most reports are only pilot studies. More pilot studies with physiological pain measures are required before these approaches are ready for large clinical trial.

Rural age-friendly ecosystems for older adults: An international scoping review with recommendations to support age-friendly communities.

Background and Aims: The population of older adults in rural areas is rising, and they experience higher rates of poverty and chronic illness, have poorer health behaviors, and experience different challenges than those in urban areas. This scoping review seeks to (1) map the state of the science of age-friendly systems in rural areas regarding structural characteristics, processes for delivering age-friendly practices, and outcomes of age-friendly systems, (2) analyze strengths, weakness, opportunities, and threats of age-friendly system implementation, and (3) make person, practice, and policy-level recommendations to support active aging and development of age-friendly communities. Methods: An international scoping review was conducted of articles that used age-friendly framing, had a sample age of 45 years of age or older, self-identified as rural, and reported empiric data. Searches were conducted in PubMed, CINAHL, AgeLine, PsychINFO, EMBASE, Scopus, and Academic Search Elite on October 26, 2021, and rerun March 10, 2023. Data were charted across three analytic layers: socioecological model, Donabedian's framework, and SWOT analysis. Results: Results reveal limited data on outcomes relevant to organizations, such as return on investment or healthcare utilization. While the SWOT analysis revealed many strengths of age-friendly systems, including their impact on persons' outcomes, it also revealed several weaknesses, threats, and gaps. Namely, age-friendly systems have weaknesses due to reliance on trained volunteers and staff, communication, and teamwork. System-level threats include community and health system barriers, and challenges in poor/developing areas. Conclusions: While age-friendly systems in this review were heterogeneous, there is an opportunity to focus on unifying elements including the World Health Organization age-friendly cities framework or 4Ms framework for age-friendly care. Despite the many benefits of age-friendly systems, we must acknowledge limitations of the evidence base, pursue opportunities to examine organizational metrics to support implementation and sustainability of age-friendly systems, and leverage improvements in age-friendliness at a community level.

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.

Family Caregiver Challenges in Pain Management for Patients with Advanced Illnesses: A Systematic Review.

Although pain management is integral to the caregiving role, there is a paucity of evidence synthesizing specific challenges family caregivers (FCs) face when managing pain for their care partners. This review comprehensively identified and summarized such challenges in the setting of advanced illnesses. Electronic databases (PubMed, CINAHL, PsycINFO, Scopus, and Health and Psychosocial Instruments) were searched using index and keyword methods for all articles published before April 2021. Fifty-five studies were included in this review. Most articles were published within the last 10 years (54%) in community settings, with home hospice care comprising the majority (50%). Most studies included patients with an advanced cancer diagnosis (84%), and 16% of the studies included patients with a noncancer diagnosis. Four major categories of challenges were identified: (1) caregiver-related issues (e.g., fears, beliefs, function), (2) caregivers' limited knowledge and skills in pain management (e.g., verbal and nonverbal pain assessment skills, pharmacological knowledge, documentation, safe management of medication), (3) communication challenges with health care providers, and (4) patient-related issues (e.g., inability to report pain). Many of these challenges have not been fully addressed in prior literature. Thus, this review provides a framework for needed future research to develop interventions that target FCs' specific challenges in providing pain management. The results also highlight a significant lack of research surrounding challenges faced by caregivers of care partners having a noncancer, dementia, or multimorbidity diagnosis.

Interventions to Support Family Caregivers in Pain Management: A Systematic Review.

CONTEXT: Family caregivers encounter many challenges when managing pain for their loved ones. There is a lack of clear recommendations on how to prepare caregivers in pain management. OBJECTIVES: To evaluate existing interventions that support family caregivers in providing pain management to patients with all disease types. METHODS: Four electronic databases were systematically searched (PubMed, Cumulative Index for Nursing Allied Health Literature, PsycINFO, and Scopus) using index and keyword methods for articles published before December 2019. The Mixed Methods Appraisal Tool was used to assess the quality. RESULTS: The search identified 6851 studies, and 25 studies met the inclusion criteria. Only two studies exclusively focused on noncancer populations (8%). Three types of interventions were identified in this review: educational interventions, cognitive-behavioral interventions, and technology-based interventions. Both educational and cognitive-behavioral interventions improved family caregiver and patient outcomes, but the content and intensity of these interventions in these studies varied widely, and there was a limited number of randomized clinical trials (68%). Hence, it is unclear what strategies are most effective to prepare family caregivers in pain management. Technology-based interventions were feasible to support family caregivers in providing pain management. CONCLUSION: Providing adequate pain management training can improve patient and family caregiver outcomes. However, the most effective interventions for family caregivers are still unclear. More rigorous and replicable clinical trials are needed to examine the effects of educational interventions, cognitive-behavioral interventions, and technology-based interventions. Also, more studies are needed in patients with a noncancer diagnosis or multimorbidity.

Adapting the Resilience Framework for Family Caregivers of Hospice Patients With Dementia.

Family caregivers face ongoing, formidable stress and burden. Caregivers need sustainable support to maintain resilience. We aim to identify challenges, possible solutions that are resources for resilience, and expected consequences from the perspective of 39 family caregivers of hospice patients with dementia. The resilience framework was used to guide the coding and synthesis of the qualitative data. Identified challenges included difficulties in communication, providing care and decision-making, lack of knowledge, emotional challenges, concern about care facility selection, death with dignity, and lack of public awareness. Resilience resources for caregiving challenges were identified at the individual, community, and societal levels. Anticipated benefits of using these resources included the ability to provide better care and have a better quality of life for both patients and caregivers. The findings of this study can guide the design and implementation of supportive interventions designed for family caregivers of hospice patients with dementia to bolster available resilience resources.

A Systematic Review of Health Dialog Systems.

BACKGROUND: Health dialog systems have seen increased adoption by patients, hospitals, and universities due to the confluence of advancements in machine learning and the ubiquity of high-performance hardware that supports real-time speech recognition, high-fidelity text-to-speech, and semantic understanding of natural language. OBJECTIVES: This review seeks to enumerate opportunities to apply dialog systems toward the improvement of health outcomes while identifying both gaps in the current literature that may impede their implementation and recommendations that may improve their success in medical practice. METHODS: A search over PubMed and the ACM Digital Library was conducted on September 12, 2017 to collect all articles related to dialog systems within the domain of health care. These results were screened for eligibility with the main criteria being a peer-reviewed study of a system that includes both a natural language interface and either end-user testing or practical implementation. RESULTS: Forty-six studies met the inclusion criteria including 24 quasi-experimental studies, 16 randomized control trials, 2 case-control studies, 2 prospective cohort studies, 1 system description, and 1 human-computer conversation analysis. These studies evaluated dialog systems in five application domains: medical education (n = 20), clinical processes (n = 14), mental health (n = 5), personal health agents (n = 5), and patient education (n = 2). CONCLUSION: We found that dialog systems have been widely applied to health care; however, most studies are not reproducible making direct comparison between systems and independent confirmation of findings difficult. Widespread adoption will also require the adoption of standard evaluation and reporting methods for health dialog systems to demonstrate clinical significance.