The effectiveness of community-based palliative care programme components: a systematic review.

BACKGROUND: There is evidence that community-based palliative care programmes can improve patient outcomes and caregiver experiences cost-effectively. However, little is known about which specific components within these programmes contribute to improving the outcomes. AIM: To systematically review research that evaluates the effectiveness of community-based palliative care components. DESIGN: A systematic mixed studies review synthesising quantitative, qualitative and mixed-methods study findings using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PROSPERO: ID # CRD42022302305. DATA SOURCES: Four databases were searched in August 2021 (CINAHL, Web of Science, ProQuest Federated and PubMed including MEDLINE) and a close review of included article references. Inclusion criteria required articles to evaluate a single, specific component of a community-based palliative care programme either within an individual programme or across several programmes. RESULTS: Overall, a total of 1,674 articles were identified, with 57 meeting the inclusion criteria. Of the included studies, 21 were qualitative, 25 were quantitative and 11 had mixed methods. Outcome measures consistently examined included patient/caregiver satisfaction, hospital utilisation and home deaths. The components of standardised sessions (interdisciplinary meetings about patients), volunteer engagement and early intervention contributed to the success of community-based palliative care programmes. CONCLUSIONS: Certain components of community-based palliative care programmes are effective. Such components should be implemented and tested more in low- and middle-income countries and key and vulnerable populations such as lower-income and marginalised racial or ethnic groups. In addition, more research is needed on the cost-effectiveness of individual programme components.

Dynamic Patterns and Modeling of Early COVID-19 Transmission by Dynamic Mode Decomposition.

INTRODUCTION: Understanding the transmission patterns and dynamics of COVID-19 is critical to effective monitoring, intervention, and control for future pandemics. The aim of this study was to investigate the spatial and temporal characteristics of COVID-19 transmission during the early stage of the outbreak in the US, with the goal of informing future responses to similar outbreaks. METHODS: We used dynamic mode decomposition (DMD) and national data on COVID-19 cases (April 6, 2020-October 9, 2020) to model the spread of COVID-19 in the US as a dynamic system. DMD can decompose the complex evolution of disease cases into linear combinations of simple spatial patterns or structures (modes) with time-dependent mode amplitudes (coefficients). The modes reveal the hidden dynamic behaviors of the data. We identified geographic patterns of COVID-19 spread and quantified time-dependent changes in COVID-19 cases during the study period. RESULTS: The magnitude analysis from the dominant mode in DMD showed that California, Louisiana, Kansas, Georgia, and Texas had higher numbers of COVID-19 cases than other areas during the study period. States such as Arizona, Florida, Georgia, Massachusetts, New York, and Texas showed simultaneous increases in the number of COVID-19 cases, consistent with data from the Centers for Disease Control and Prevention. CONCLUSION: Results from DMD analysis indicate that certain areas in the US shared similar trends and similar spatiotemporal transmission patterns of COVID-19. These results provide valuable insights into the spread of COVID-19 and can inform policy makers and public health authorities in designing and implementing mitigation interventions.

Hearing Aid Loan Program for Hearing Loss at the End of Life.

This article describes a hearing aid loan program to provide free amplification devices for patients at the end of life to help them communicate more effectively at this critical time. It includes steps for establishing such a program, addressing challenges, and the role of the informal caregiver throughout the intervention. Healthcare professionals and social workers are encouraged to develop similar programs and use the information here as helpful suggestions to consider for their programs.

Parenting style in childhood and attitudes toward caregiving in adulthood: a qualitative study.

This study aims to explore how relationships with parents during childhood can influence an individual's attitude toward caregiving later in life. The qualitative data came from 47 respondents who care for adult loved ones, with a caregiver mean age of 46.7. The respondents reflected on their recent experience of providing care for their loved ones and how experiences with their caregivers growing up may have influenced their caregiving attitudes. Using a codebook thematic analysis, themes were generated linking childhood experiences to current attitudes toward caregiving. Themes included reciprocating good care, performing obligatory care, and stopping the generational transference of negative care. For most participants, providing quality care for adult loved ones happened regardless of whether the one's childhood experiences with caregivers were positive or negative. Knowledge about the impact of childhood experiences can help health professionals develop interventions to support family caregivers that consider childhood experiences with parents.

Effectiveness of Skill-Building Interventions for Informal Caregivers of Adults with Cancer: a Systematic Review.

Over 19 million people worldwide were diagnosed with cancer in 2020. Informal caregivers of adults with cancer play an important role in helping their loved ones with cancer yet often receive little support in developing the necessary skills for caregiving. A systematic review of skill-building interventions for informal caregivers of adults with cancer was conducted across three electronic databases for academic articles published through February 2022. PRISMA reporting guidelines were followed throughout this review, the Mixed Methods Appraisal Tool was used to assess study quality, and results were summarized in a narrative synthesis. The main components of skill-building interventions examined include caregiving preparedness, communication, and self-care. Nine of the 11 included articles showed that interventions effectively built skills for informal caregivers. The articles reviewed had a wide variety of intervention strategies, outcome measures, and study designs. Two of the 11 articles mentioned vulnerable and key groups, and no studies were performed in low- and middle-income countries. Findings generally support implementing skill-building interventions for informal caregivers of adults with cancer; however, further research is necessary to determine the most effective approaches for improving caregiver skills and reaching vulnerable and key populations.

The Perspective of Administrators of Intellectual Disability Organizations on the COVID-19 Pandemic.

OBJECTIVE: To learn about the challenges, policies, and needed resources to serve people with intellectual disability and protect staff during the COVID-19 pandemic. From the perspective of intellectual disability service providers. METHODS: We conducted in-depth qualitative interviews with 16 intellectual disability organization administrators throughout Illinois, USA from November 2020 through February 2021. We coded and analyzed the data using thematic analysis. RESULTS: Three major themes emerged: (1) COVID-19 caused considerable challenges to people with intellectual disability and staff and service providers, (2) intellectual disability organizations reinvented service provisions in response to COVID-19 challenges, and (3) the interrelatedness of intellectual disability organizations, public policies, and community entities became evident. CONCLUSIONS: Exhibiting responsiveness to needs and developing innovative solutions were strategies championed by intellectual disability organizations during the pandemic. Fostering collaboration with community entities may assist these organizations in navigating pandemic challenges and developing resilient infrastructure for future environmental threats.

Construction and case study of a novel lung cancer risk index.

PURPOSE: This study constructs a lung cancer risk index (LCRI) that incorporates many modifiable risk factors using an easily reproducible and adaptable method that relies on publicly available data. METHODS: We used meta-analysis followed by Analytic Hierarchy Process (AHP) to generate a lung cancer risk index (LCRI) that incorporates seven modifiable risk factors (active smoking, indoor air pollution, occupational exposure, alcohol consumption, secondhand smoke exposure, outdoor air pollution, and radon exposure) for lung cancer. Using county-level population data, we then performed a case study in which we tailored the LCRI for use in the state of Illinois (LCRIIL). RESULTS: For both the LCRI and the LCRIIL, active smoking had the highest weights (46.1% and 70%, respectively), whereas radon had the lowest weights (3.0% and 5.7%, respectively). The weights for alcohol consumption were 7.8% and 14.7% for the LCRI and the LCRIIL, respectively, and were 3.8% and 0.95% for outdoor air pollution. Three variables were only included in the LCRI: indoor air pollution (18.5%), occupational exposure (13.2%), and secondhand smoke exposure (7.6%). The Consistency Ratio (CR) was well below the 0.1 cut point. The LCRIIL was moderate though significantly correlated with age-adjusted lung cancer incidence (r = 0.449, P < 0.05) and mortality rates (r = 0.495, P < 0.05). CONCLUSION: This study presents an index that incorporates multiple modifiable risk factors for lung cancer into one composite score. Since the LCRI allows data comprising the composite score to vary based on the location of interest, this measurement tool can be used for any geographic location where population-based data for individual risk factors exist. Researchers, policymakers, and public health professionals may utilize this framework to determine areas that are most in need of lung cancer-related interventions and resources.

Creation and Evaluation of the Illinois Cancer Risk Index as a Predictor of Four Common Cancers.

INTRODUCTION: Nearly half of all cancer deaths in the US are attributed to 4 common cancers: lung, colorectal, breast, and prostate. Illinois residents experience higher rates of cancer death from all 4 cancers compared with the US overall. We developed the Illinois Cancer Risk Index (ICRI), which incorporates many predictors of these cancers into a single summary measure, to identify Illinois counties that would benefit most from public health intervention. METHODS: We identified 90 county-level predictors of 4 common cancers, used multicollinearity testing to reduce this number to 61, and applied factor analysis to extract and analyze 4 factors representing 25 variables. Next, we created the ICRI by regressing the 4 factors on our outcome of interest - an age-adjusted common cancers mortality rate (CCMR), incorporating the direction of the ß-coefficients from regression models to sum factor scores. Finally, we mapped and assessed the geographic distributions of both ICRI and CCMR by county across the state. RESULTS: The ICRI was positively associated with the CCMR (r = 0.59, P < .001) and explained 32.2% of the variance in the CCMR across Illinois. The ICRI showed distinct geospatial patterns across the state, with the highest risk counties located in the east-central, far northern, and southern regions. The CCMR showed similar geospatial patterns. CONCLUSION: Our study identifies counties in Illinois that may benefit most from interventions that target multiple cancer risk factors simultaneously. The ICRI may be adapted for use in other geographic locations where data are available.

Developing a Needs Assessment Process to Address Gaps in a Local System of Care.

Early diagnosis and access to behavioral health services can improve the health outcomes for young children suffering from mental illness. Often, children and their families' behavioral health needs are not met due to a broken local system of care. Developing a deep understanding of the situation by exploring all stakeholders' needs across a community in conjunction with a comprehensive review of the existing scientific literature prepared one rural midwestern county to build a better local system of care. This study's unique aspects include visual mapping using art in focus groups and close collaboration between a public mental health board, academic faculty, student researchers, local behavioral health organizations, and schools. Major themes found about the existing barriers were dysfunctional patterns in families, lack of resources, reliance on the school system, and lack of access to healthcare professionals. Other communities can use this approach as a model for a local needs assessment.

Hospice Response to COVID-19: Promoting Sustainable Inclusion Strategies for Racial and Ethnic Minorities.

There is a disproportionate burden of illness and death among racial/ethnic minorities related to COVID-19. The importance of reaching groups suffering the most with resources such as advance directive guidance, telehealth, and culturally sensitive education materials is vital to providing quality, inclusive care. A crisis presents an opportunity to unite and problem-solve to help avoid the dire consequences facing inaction. In this way, inclusive responses by hospices, social workers, other community partners during the COVID-19 pandemic can help reach and alleviate the pain of those groups most afflicted. We offer hospice inclusion strategies that align with general pandemic response trends that may lead to greater hospice inclusion beyond this public health emergency.

Health behaviors and related disparities of insured adults with a health care provider in the United States, 2015-2016.

Health care providers are in a unique position to address patients' health behaviors and social determinants of health, factors like income and social support that can significantly impact health. There is a need to better understand the risk behaviors of a population that providers may counsel (i.e., those who are insured and have a provider.) Using the 2015 and 2016 CDC's Behavioral Risk Factor Surveillance System, we examine the prevalence of health behaviors and the existence of disparities in health behaviors based on social determinants among American adults. Our sample included noninstitutionalized adults aged 18 to 64 years, in the U.S. (N > 300,000). We used multivariate logistic regression analysis to assess the independent effects of income, education, sex, race, and metropolitan status on nine key health behaviors. Among adults with insurance and a provider (n > 200,000): 1) rates of engaging in poor health behaviors ranged from 6.4% (heavy drinking) to 68.1% (being overweight or obese), 2) rural residence, lower income, and lower education were associated with decreased clinical preventive services, 3) lower income and lower education were associated with lifestyle-related risks, and 4) being black was associated with receiving more cancer screenings, no influenza vaccination, inadequate physical activity, and being overweight or obese. Insured adults, with a provider, are not meeting recommended guidelines for health behaviors. Significant disparities in health behaviors related to social factors exist among this group. Health care providers and organizations may find it helpful to consider these poor health behaviors and disparities when determining strategies to address SDOH.

Impact of Repeated Reimbursement Penalties on Hospital Total Quality Scores.

OBJECTIVES: The incidence of hospital-acquired conditions (HACs) is a serious public health issue with implications ranging from patient morbidity and mortality to negative financial impacts on patients and health care systems. Despite substantial efforts to address and reduce HACs, research into the effect of quality improvement programs is inconclusive. This study seeks to better understand the relationship between repeated reimbursement penalties and improvement in HAC quality scores. METHODS: A quantitative comparative analysis of U.S. health care data was conducted. Data on quality outcomes and hospital characteristics were sourced from the Hospital-Acquired Condition Reduction Program from fiscal years 2018 and 2019 and the Centers for Medicare & Medicaid Services Inpatient Prospective Payment System impact files, respectively. RESULTS: In total, 3123 U.S. hospitals were analyzed to compare differences between total HAC scores of hospitals with and without penalties in consecutive years. Hospitals with repeated penalties had significantly greater improvement in scores ( t497.262 = -13.00, P < 0.001), and the impact was greatest in small hospitals (<100 beds). Repeated penalties had a smaller impact on disproportionate share hospitals (Cohen d = 0.73). Among all hospitals, the effect of repeated penalties was large (Cohen d = 0.75). CONCLUSIONS: This study suggests that repeated penalties can improve quality scores in U.S. hospitals. However, the effect may be exaggerated for smaller hospitals and those that serve patient populations with a relatively higher socioeconomic status. The reason disproportionate share hospitals did not show as much improvement as nondisproportionate hospitals may be because hospitals serving vulnerable populations often have fewer resources.

Measuring decision aid effectiveness for end-of-life care: A systematic review.

Objective: To systematically review research analyzing the effectiveness of decision aids for end-of-life care, including how researchers specifically measure decision aid success. Methods: We conducted a systematic review synthesizing quantitative, qualitative, and mixed-methods study results using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Four databases were searched through February 18, 2023. Inclusion criteria required articles to evaluate end-of-life care decision aids. The review is registered under PROSPERO (#CRD42023408449). Results: A total of 715 articles were initially identified, with 43 meeting the inclusion criteria. Outcome measures identified included decisional conflict, less aggressive care desired, knowledge improvements, communication improvements, tool satisfaction, patient anxiety and well-being, and less aggressive care action completed. The majority of studies reported positive outcomes especially when the decision aid development included International Patient Decision Aid Standards. Conclusion: Research examining end of life care decision aid use consistently reports positive outcomes. Innovation: This review presents data that can guide the next generation of decision aids for end-of-life care, namely using the International Patient Decision Aid Standards in developing tools and showing which tools are effective for helping to prevent the unnecessary suffering that can result when patients' dying preferences are unknown.

Challenges and Coping Strategies in Transitioning From Caregiving to Widowhood: A Systematic Review.

Ninety-one percent of surviving spouses in the U.S. cared for their spouses before they died. This review explores the challenges of the transition from caregiving to widowhood and different coping strategies used by widowed spousal caregivers. A systematic review of literature on the transition from caregiving to widowhood was conducted using four major academic search engines. Overall, 280 articles were identified, with 22 meeting the inclusion criteria. Challenges for widowed caregivers included experiencing care burden, letting go of the caregiver role, grief, and triggers. Widowed caregivers' coping strategies included social support and services use, filling the time gap, finding spirituality, and engaging in unhealthy behaviors. Future research is needed to determine the efficacy of widowed caregivers' coping strategies. Concerted and collaborative action by health professionals, community organizations, and policymakers is needed to develop programs and other approaches to support widowed caregivers.

Financial train, health behaviors, and psychological well-being of family caregivers of older adults during the COVID-19 pandemic.

Objectives: This study aims to examine the change in financial strain, health behaviors, and psychological well-being of family caregivers of older adults during the COVID-19 pandemic and explore the differences in mental health outcomes by gender, race, and relationship status. Methods: Using the 2020 National Health and Aging Trends Study COVID-19 supplement, our sample included 2026 family caregivers of older adults. Structural equation modeling was conducted. Results: Caregivers with financial strain showed worse mental health than those with no financial strain. Female or adult children caregivers reported significantly less time walking, more financial strain, and a higher level of negative mental health outcomes compared to male or spouse caregivers; non-White caregivers reported greater positive mental health outcomes compared to White caregivers during the pandemic. Discussion: Health professionals should consider the financial and mental health impact of COVID-19 among family caregivers when designing and delivering caregiver support programs. Innovation: This study provides nationally representative estimates of several important health behaviors and health outcomes for caregivers of older adults during and after the COVID-19 pandemic, helping to fill the knowledge gap about the characteristics of caregivers whose health and well-being were most affected by the pandemic.

Hospice Capacity to Provide General Inpatient Care: Emergency Department Utilization and Live Discharge Among Cancer Patients.

General inpatient (GIP) hospice care is used only minimally for hospice patients, and more than a quarter of Medicare hospice facilities do not provide GIP care. To determine the impact of hospices' capacity to provide on emergency department use during hospice enrollment and live discharge from hospice, we used Surveillance, Epidemiology, and End Results-Medicare linked data and CMS Provider of Services data from 2007 to 2013 from ten states and two metropolitan regions. Grouping hospices into three GIP care provision categories: 1) no-GIP; 2) GIP-contract; and 3) GIP-IHF where hospices directly provide GIP care in their own inpatient hospice facility (IHF), we built a multilevel logistic model that accounted for unobserved hospice characteristics. Nearly 9% of the study sample received GIP care, of which 82% received such care in the last week of discharge. GIP-IHF hospices had lower live discharge rates than no-GIP hospices (AOR: .61; 95% CI: .47-.79; P < .001) and GIP-contract hospices (AOR: .84; 95% CI: .70-1.00; P < .05). Similarly, GIP-contract hospices were also associated with a decreased risk of live discharge, compared to no-GIP hospices (AOR: .76; CI: .62-.92; P < .05). There was no difference in emergency department use between no-GIP hospices and hospices with such capacity. Our results suggest that hospices capable of providing GIP care have lower live discharge rates than their counterparts. However, the fact that GIP care tends to be provided too close to death limits its effectiveness in preventing avoidable emergency department use.

Health Behaviors, Financial Difficulties, and Depressive Symptoms Among Older Adults Across Gender and Race During the COVID-19 Pandemic.

Background: COVID-19 deeply affected the health and well-being of older adults. This study examines health behavior change and the interrelationships between health behaviors, financial difficulties, and depressive symptoms among older adults across gender and race during the pandemic. Methods: Using Rounds 1, 5, and 10 of the National Health and Aging Trends Study (NHATS) linked with the NHATS COVID-19 dataset, our sample included Medicare beneficiaries aged 65 or older in the U.S. (N = 3,118). We modeled the interrelationships between health behaviors, financial difficulties, and depressive symptoms using a structural equation model. Results: Female participants reported less walking, more changes in eating habits, less sleeping, and less alcohol consumption during the pandemic than before the pandemic compared to male participants. Compared to White, Non-White participants showed higher proportions of experiencing financial difficulties, less walking, less vigorous activity, and changes in time spent eating and sleeping during than before the pandemic. Financial difficulties was positively associated with depressive symptoms and sedentary behavior. Active behavior was negatively associated with depressive symptoms, while sedentary behavior was positively associated with more depressive symptoms. Discussion: Health professionals should consider health behaviors and financial difficulties when intervening on depressive symptoms experienced by older adults since the pandemic.

An online intervention to improve the health and well-being of informal caregivers of individuals with Alzheimer's disease: A pilot study.

Objective: Describe an intervention to improve the health and well-being of informal caregivers of individuals with Alzheimer's disease (AD) and present pilot program findings. Methods: Participants (N = 31, mean age = 45.7) were randomly assigned to one of two conditions: an online synchronous didactic lesson and peer support session series or an asynchronous didactic only session series. Outcome variables included physical health, nutrition intake, and stress. One-way ANOVA was conducted to examine the effects of the intervention. The least significant difference (LSD) post hoc test was used to analyze the difference pattern between means. Results: Participants in both conditions reported healthier dietary behavior and lower level of stress from pre-intervention to the post-intervention. These effects were not maintained at one-month follow up. Conclusion: An online educational intervention may improve the health and well-being of informal caregivers of people with AD. Further research is necessary to determine which specific intervention components to include and what strategies may help participants maintain improved health behaviors. Innovation: This program focused on the health and well-being of informal caregivers of individuals with AD rather than on emphasizing how caregivers can perform their caregiving duties better. The intervention was provided in an underserved lower-income, rural area.

Experiences of caregivers and hospice leaders with telehealth for palliative care: a mixed methods study.

BACKGROUND: Telehealth was expanded worldwide during the COVID-19 pandemic to deliver essential care remotely to patients, including those receiving palliative care. Bipartisan groups of politicians in the United States call for continuing the expanded Medicare coverage of telehealth services beyond the pandemic period. The aim was to understand telehealth's benefits and risks to hospice and palliative care patients and their families. METHODS: We conducted a cross-sectional survey of 595 caregivers of seriously ill patients and interviewed 25 hospice leaders across the United States. We used multiple linear regression to analyze the survey data and qualitative methods to determine themes from the interview data. RESULTS: Our survey showed that a good internet connection, better access to video, and the patient being younger than 65 years old were associated with greater satisfaction with telehealth. The hospice leader interviews highlighted that telehealth can enhance or detract from quality care, depending on the function; confusion over telehealth policies and concern for abuse exists; and telehealth during the pandemic has spurred on technology-enabled innovation and improvements, especially for resource-constrained hospice and palliative care organizations. CONCLUSIONS: Telehealth used during the pandemic showed that it may work for certain hospice and palliative care services. As telehealth coverage expands, it is important to address its risks and shortcomings upfront. When designed and implemented with the patient and equity in mind, telehealth has the potential to improve access to hospice and palliative care for all.