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The Hospital Elder Life Program (HELP) is a multicomponent delirium prevention program targeting delirium risk factors of cognitive impairment, vision and hearing impairment, malnutrition and dehydration, immobility, sleep deprivation, and medications. We created a m odified and e xtended version of the program, HELP-ME, deployable under COVID-19 conditions, for example, patient isolation and restricted staff and volunteer roles. We explored perceptions of interdisciplinary clinicians who implemented HELP-ME to inform its development and testing. This was a qualitative descriptive study of HELP-ME among older adults on medical and surgical services during the COVID-19 pandemic. Participants included HELP-ME staff at 4 pilot sites across the United States who implemented HELP-ME.We held five 1-hour video focus groups (5-16 participants/group) to review specific intervention protocols and the overall program. We asked participants open-endedly about positive and challenging aspects of protocol implementation. Groups were recorded and transcribed. We used directed content analysis to analyze data. Participants identified general, technology-related, and protocol-specific positive and challenging aspects of the program. Overarching themes included the need for enhanced customization and standardization of protocols, need for increased volunteer staffing, digital access to family members, patient technological literacy and comfort, variation in the feasibility of remote delivery among intervention protocols, and preference for a hybrid program model. Participants offered related recommendations. Participants felt that HELP-ME was successfully implemented, with some modifications needed to address limitations of remote implementation. A hybrid model combining remote and in-person aspects was recommended as the preferred option. [ABSTRACT FROM AUTHOR]

The NIH Diversity Administrative Supplement is a funding mechanism that provides support for diverse early-stage researchers. There is limited guidance on how to apply for these awards. We describe perspectives of NIH program/diversity officers and university research administrators offering recommendations for diversity supplement submission. This article is the product of a working group exploring diversity in research. Nursing faculty from an R2 Historically Black College and University and an R1 research intensive university conducted stakeholder interviews with NIH program/diversity officers and university research administrators. We used content analysis to categorize respondents' recommendations. Recommendations centered on harmonizing the applicant with the program announcement, communication with program/diversity officers, mentor/mentee relationship, scientific plan, and systematic institutional approaches to the diversity supplement. Successful strategies in submitting diversity supplements will facilitate inclusion of diverse researchers in NIH-sponsored programs. Systematic approaches are needed to support development of diverse voices to enhance the scientific community. [ABSTRACT FROM AUTHOR]

• The diversity supplement is similar to a career development award and should be approached as such with regard to strong mentorship and well-thought-out training • Diversity supplements are an important start to the careers of underrepresented researchers; thus, mentees should consider developing the application around their research interests and goals • There is a need for a multipronged approach (institutions, NIH, mentors, and mentees) to enhance awareness of diversity supplements The National Institutes of Health supports professional development of diverse researchers through diversity supplements. Limited awareness and understanding of the application process have hindered utilization of this funding mechanism. We describe perspectives and recommendations of mentee and mentor recipients of diversity supplements. Our working group, comprised of faculty from an Historically Black College and University and an R1 research university, conducted stakeholder interviews with three mentees and four mentors from various institutions. We used content analysis to derive categories of experiences and recommendations. Interviewees reported on advantages of diversity supplements, ensuring institutional support, identifying a good mentee-mentor match, developing grantsmanship specific to diversity supplements, and increasing numbers of these applications. We identify opportunities for stakeholders to increase awareness of diversity supplements. Our data support greater understanding of this mechanism, establishing strong mentoring relationships, and submitting robust applications. Findings can enhance diversity among the scientific community. [ABSTRACT FROM AUTHOR]

Background : Cancer pain prevalence remains high, and variance in self-efficacy for managing pain may explain why some patients experience greater pain severity. Aim: This study explored perceptions of self-efficacy in relation to cancer pain severity and treatment related characteristics. Method: A descriptive cross-sectional survey was administered to 50 cancer outpatients. Data analysis involved descriptive and correlational statistical analyses. Results: Self-efficacy to manage pain was significantly associated with time since diagnosis and ability to deal with frustration, and inversely associated with pain severity level. A large proportion of patients reported low satisfaction self-managing their pain. Most patients reported independently self-managing their cancer pain; however, satisfaction with pain management was low for a large proportion of patients. Time since cancer diagnosis and ability to deal with frustration due to cancer pain were positively associated with cancer pain self-efficacy, whereas pain self-efficacy had a significant inverse correlation with cancer pain severity. Conclusions: Enhancing self-efficacy to self-manage under-treated cancer pain is important with implications for improving pain outcomes and quality of life. Further investigation on unmet needs and preferences for cancer pain self-management support is warranted. [ABSTRACT FROM AUTHOR]

• The Self- and Family Management Framework has been broadly used. • There is emerging use of clinician data and e-health interventions. • Family caregiver dynamics and cultural issues are areas for development. • Reimbursement policy should accommodate various types of family caregiver support. • Findings will inform a third version of the Framework. The Self- and Family Management Framework (SFMF) was created in 2006 and revised in 2015 to guide research on self- and family management of chronic conditions. There has been no review of use of the SFMF. We reviewed articles citing the SFMF to identify the frequency and nature of use. We conducted a citation analysis, searching Web of Science, Scopus, and Google Scholar databases and extracted key data from identified articles. Of 126 articles, 84(66%) cited the 2006 SFMF, 37(29%) cited the 2015 SFMF, and 6(5%) cited both. The SFMF was used most to inform study design. Users noted strengths (e.g., considers family context) and limitations (e.g., non-specification of patient- family caregiver synergies) of the framework. The SFMF has been used broadly to guide research on self- and family management of chronic conditions. Findings will inform development of a third version of the SFMF. [ABSTRACT FROM AUTHOR]

1. Participants will self-report the ability to conduct a pre-intervention evaluation through a mixed methods approach in order to understand nuanced intervention implementation. 2. Participants will self-report the ability to employ a patient-focussed evaluation to diverse populations for telehealth acceptance to deliver palliative care. Residents of Medicaid-funded assisted living facilities (M-ALF) have palliative care needs with poor access to care. Telehealth offers a means of delivering palliative care, but its acceptability to M-ALF residents is unexplored. To explore acceptance of telehealth to provide palliative care to M-ALF residents We applied a convergent mixed-methods design using semi-structured interviews and the Telehealth Acceptance Questionnaire (TAQ, score range: 18–90, < 70=lower acceptance) to explore acceptance of telehealth and its use in discussing symptoms and other serious illness needs. We purposively sampled residents from an M-ALF in Bronx, NY who were age 65+, English-speaking, with no history of cognitive impairment, a monthly income of one symptom. We used conventional content analysis to derive themes from interview data, calculated descriptive statistics for sample characteristics and TAQ results, and integrated thematic content and the TAQ scores to draw metainferences. Sample (n=12) characteristics were 76% Black, average age of 74.2, 47% immigrant, 29% unhoused, 33% drug/alcohol use, 53% anxiety/depression, and an average 5.5 symptoms. Qualitative data reflected a range of telehealth acceptability. Negative themes included discomfort with and lack of access to technology, preference for face-to-face communication, and displeasure with forced use of telehealth. Positive themes were enhanced services, sense of connection, convenience, and supports independence. Neutral themes were indifference and video-based communication as normalized. The mean TAQ score was 64.2 (range 34-86, SD=17.4). Metainferences revealed convergence of interview and TAQ data, and that telehealth is generally acceptable. While M-ALF residents had distinct positive, neutral, and negative views about using telehealth to receive palliative care, overall, it was acceptable to supplement face-to-face care. Telehealth can provide much-needed access to palliative care among M-ALF residents. Facilitators of use include increasing access to technology, addressing the learning curve, and providers creating connection with residents. [ABSTRACT FROM AUTHOR]

Objective To describe the integration of family caregivers into palliative oncology care using the Self- and Family Management Framework. Data Sources Peer-reviewed journal articles. Conclusion The role of family caregivers in palliative oncology includes focusing on illness needs, activating resources, and living with cancer. Several factors may serve as facilitators of or barriers to these activities. A growing number of interventions support family caregivers’ involvement in palliative oncology care. Implications for Nursing Practice Nurses should identify who the family caregiver is, confirm ability and willingness, discuss patients’ and family caregivers’ goals for cancer care, activate resources, and promote ongoing communication to support changing needs. [ABSTRACT FROM AUTHOR]

Context: Although recommendations are for goals of care (GoC) conversations to happen early and often, their timing and content over the disease course remain unclear.Objectives: To describe perceptions of the timing and content of GoC conversations among oncologists and patients with advanced cancer.Methods: Semi-structured interviews with oncologists and patients at four hospitals in New York and Connecticut. We analyzed data using interpretive description.Results: Oncologists (n = 21) were 67% male, averaged 46 years old (range 34-68 years), and had a mean 20 years (range 8-42 years) in practice. Advanced cancer patients (n = 39) were 59% female with a mean age of 58 years (range 26-88 years). Oncologists and patients viewed GoC conversations along an initial, intermediate, and final continuum. Oncologists reported having initial GoC conversations to build rapport, provide disease information, and clarify and consider treatment intent and options. Intermediate conversations focused on changes in treatment and side effects. Final conversations occurred when patients were hospice-eligible and covered the shift to comfort care, a treatment summary, and advance directives. Timing and content were influenced by cancer type, disease status, and emotional state. Patients supported beginning GoC conversations early, but had different preferences for content of initial conversations. Some wanted complete information; others found this overwhelming. Patients felt intermediate GoC conversations should occur at decision points with time for processing. Content of intermediate and final conversations was dependent on patients' prognosis, questions, and treatment decisions.Conclusion: Although GoC conversations should follow individual patient preferences, our findings offer structure for their timing and content. [ABSTRACT FROM AUTHOR]

• The Self- and Family Management Framework (SFMF) has been utilized internationally. • Following review, the SFMF meets established criteria for a middle range theory. • A new model of self- and family management of chronic illness is proposed. • Research is needed on SFM across race/ethnicity, chronic conditions, and countries. • Modern family structures require an inclusive definition of family to inform policy. The Self- and Family Management Framework was created in 2006 to help structure self- and family management science. Based on a series of reviews and syntheses of emerging research and critical evaluation, we developed the Framework into a robust nursing theory. In this article, we reintroduce the Self- and Family Management Framework as the Middle Range Theory of Self- and Family Management of Chronic Illness. We review steps in the development and updating of the Framework, share rationale for advancement to a middle range theory, explicate components of the newly designed model, and propose future directions. It is our hope that this middle range theory will guide researchers and clinicians more comprehensively in supporting patients and families managing chronic illness, which will in turn inform continued theory development. [ABSTRACT FROM AUTHOR]

• The Self- and Family Management Framework has structured quantitative studies. • Quantitative studies have focused more on patients than family caregivers. • Independent and dependent variables have represented all Framework components. • Racial and/or ethnic minority representation has been limited among study participants. • Policymakers should consider patients and family independently and as co-managers. The Self- and Family Management Framework (SFMF) identifies factors and outcomes of patient and family management of chronic illness. In a previous citation analysis, we reported the frequency and nature of use of the SFMF. We conducted a sub-analysis of quantitative articles in the citation analysis to examine testing of relationships depicted in the SFMF. We analyzed study purposes, independent and dependent variables, study implications, and text that referred to the SFMF in 40 articles. The SFMF has been used largely to explore factors affecting SFM behaviors, focusing on patient versus family self-management. Independent variables included all categories of facilitators/barriers specified in the SFMF. Dependent variables included all SFMF components (Facilitators/Barriers, Processes, Proximal and Distal Outcomes). Racial/ethnic diversity was limited among study participants. Study implications pertained mostly to psychosocial outcomes. Most studies referred to the SFMF generally. Findings will contribute to revision of the SFMF. [ABSTRACT FROM AUTHOR]

Background Despite evidence that palliative care increases quality and length of life, many patients and families remain uninformed about its nature and benefits. The purpose of this study is to test a psycho-educational intervention, Managing Cancer Care : A Personal Guide ( MCC ), intended to improve breast cancer patients' knowledge of palliative care and to facilitate its timely integration into cancer self-management. Methods Aims are to: 1) evaluate the effects of MCC on patients' knowledge of palliative care; 2) examine preliminary effects of MCC on patients' behaviors (role in self-management, engagement in goals of care conversations, medical communication, management of transitions, health care utilization), and feelings (self-efficacy, anxiety, depression, uncertainty); and 3) evaluate protocol feasibility and acceptability. An exploratory aim is to investigate how demographic and clinical factors may moderate intervention effects, with emphasis on differences in use and outcomes among minority participants. We plan to enroll 60 patients and their family caregivers with 50% minority participation. The intervention group receives MCC; the attention-control group receives a Symptom Management Toolkit. We collect data at baseline, one, and three months. Discussion This study will inform a large scale trial of MCC. It is challenging for patients with breast cancer, their family caregivers, and providers to make choices that include palliation alone or in combination with potentially curative treatment. MCC may help address this challenge by giving patients the information, skills, and confidence to better self-manage breast cancer. Results may help to establish palliative care as a mainstay of self-management interventions targeting serious illness. Trial registration ClinicalTrials.gov Identifier NCT02148575 (date registered: 5.21.14; date first patient enrolled: 7.15.14) [ABSTRACT FROM AUTHOR]

Objectives To evaluate physician-perceived strengths and limitations of the Thrombolysis in Myocardial Infarction (TIMI) risk scores for use in older adults with acute myocardial infarction (AMI). Background The TIMI risk scores are risk stratification models developed to estimate mortality risk for patients hospitalized for AMI. However, these models were developed and validated in cohorts underrepresenting older adults (≥75 years). Methods Qualitative study using semi-structured telephone interviews and the constant comparative method for analysis. Results Twenty-two physicians completed interviews ranging 10–30 min (mean = 18 min). Median sample age was 37 years, with a median of 11.5 years of clinical experience. TIMI strengths included familiarity, ease of use, and validation. Limitations included a lack of risk factors relevant to older adults and model scope and influence. Conclusions Physicians report that the TIMI models, while widely used in clinical practice, have limitations when applied to older adults. New risk models are needed to guide AMI treatment in this population. [ABSTRACT FROM AUTHOR]

Background: Research on self- and family management of chronic conditions has advanced over the past 6 years, but the use of simple frameworks has hampered the understanding of the complexities involved. Purpose: We sought to update our previously published model with new empirical, synthetic, and theoretical work. Methods: We used synthesis of previous studies to update the framework. Discussion: We propose a revised framework that clarifies facilitators and barriers, processes, proximal outcomes, and distal outcomes of self- and family management and their relationships. Conclusions: We offer the revised framework as a model that can be used in studies aimed at advancing self- and family management science. The use of the framework to guide studies would allow for the design of studies that can address more clearly how self-management interventions work and under what conditions. [ABSTRACT FROM AUTHOR]

Abstract: Context: Self-management involves behaviors that individuals perform to handle health conditions. Self-management may be particularly challenging during transitions—shifts from one life phase or status to another, for example, from cure- to noncure-oriented care—because they can be disruptive and stressful. Little is known about individuals'' experiences with self-management, especially during transitions. Objectives: Our purpose was to describe experiences of self-management in the context of transitions among women with advanced breast cancer. Methods: We interviewed a purposive sample of 15 women with metastatic breast cancer about their self-management preferences, practices, and experiences, including how they managed transitions. Interviews were recorded and transcribed. The qualitative method of interpretive description was used to code and analyze the data. Results: Participants'' mean age was 52 years (range 37–91 years); most were White (80%), married (80%), and college educated (60%). Self-management practices related to womens'' health and to communication with loved ones and providers. Participants expressed a range of preferences for participation in self-management. Self-management included developing skills, becoming empowered, and creating supportive networks. Barriers to self-management included symptom distress, difficulty obtaining information, and lack of knowledge about the cancer trajectory. Women identified transitions as shifts in physical, emotional, and social well-being, as when their cancer progressed and there was a need to change therapy. Transitions often prompted changes in how actively women self-managed and were experienced as positive, negative, and neutral. Conclusion: Self-management preferences can vary. Providers should explore and revisit patients'' preferences and ability to self-manage over time, particularly during transitions. [Copyright &y& Elsevier]

Abstract: Objective: Older adults are less likely than other age groups to participate in clinical decision-making. To enhance participation, we sought to understand how older adults consider and discuss their life and health goals during the clinical encounter. Methods: We conducted six focus groups: four with community-dwelling older persons (n =42), one with geriatricians and internists (n =6), and one with rehabilitation nurses (n =5). Participants were asked to discuss: patients’ life and health goals; communication about goals, and perception of agreement about health goals. Group interactions were tape-recorded, transcribed, and analyzed using content analysis. Results: All participants were willing to discuss goals, but varied in the degree to which they did so. Reasons for non-discussion included that goal setting was not a priority given limited time, visits focused on symptoms, mutual perception of disinterest, and the presumption that all patients’ goals were the same. Conclusion: Interventions to enhance goal setting need to address key barriers to promoting goals discussions. Participants recognized the benefits of goal setting, however, training and instruments are needed to integrate goal setting into medicine. Practice implications: Setting goals initially and reviewing them periodically may be a comprehensive, time-efficient way of integrating patients’ goals into their care plans. [Copyright &y& Elsevier]

Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing. [ABSTRACT FROM AUTHOR]

To investigate mental health needs and barriers to seeking mental health support in Medicaid-funded Assisted Living Facility (M-ALF). A multimethod, qualitative-dominant descriptive design using questionnaires and semistructured interviews. The study occurred at a M-ALF in the Bronx, New York. A researcher in residence recruited 13 residents (11 Black or African American, 2 Asian) using purposive sampling. Demographic data and mental health indicators (depression, anxiety, stress, hopelessness) were measured with questionnaires (Center for Epidemiological Studies Depression Scale, Edmonton Symptom Assessment System, Perceived Stress Scale, Beck Hopelessness Survey) and analyzed with descriptive statistics. Interviews were conducted between June and November 2021, transcribed, and analyzed using conventional content analysis. Thirteen residents (mean age: 73.4 years, mean length of stay: 3.5 years; range: 1.0-7.5) completed data collection. Quantitatively indicators of unmet mental health were common. Qualitatively, residents reported barriers to mental health access to address depression, anxiety, and substance use. This was accompanied by concerns surrounding loss of autonomy, mistrust for M-ALF organizational support, isolation and uncertainty about how to receive mental health support. Perspectives were shaped by past experiences with institutional living, serious illness, and being unhoused. Themes and subthemes were (1) mental health need (unmet mental health need, depression, and anxiety and seeking support through non–mental health resources) and (2) barriers to mental health support (dissatisfaction with M-ALF care, perceived threats to autonomy, desire for autonomy that leads to diminished care seeking). Residents of M-ALF have mental health needs for which care is stymied by loss of autonomy, lack of resources, and the M-ALF environment. Residents use unconventional resources to address needs that may be neither efficient nor effective. Novel mental health interventions and processes are needed to improve mental health access and should prioritize residents' desire for autonomy and the unique circumstances of living in M-ALF. [ABSTRACT FROM AUTHOR]

Context: Consequent to increasing COVID-19 infection rates, the Palliative Care (PC) service at a large New England hospital shifted from in-person to telehealth-delivered PC (TPC).Objectives: We compared the quality of TPC to in-person PC during the early COVID-19 pandemic.Methods: We conducted an electronic health record review of PC consultations of patients hospitalized during three periods: pre-COVID January, 2020-February, 2020 (in-person); peak-COVID March, 2020-June, 2020 (majority TPC); and post-peak September, 2020-October, 2020 (majority in-person). We examined the relationship between these periods and PC delivery characteristics and quality measures using descriptive and bivariate statistics.Results: Of 377 patients, 50 were pre-COVID (TPC=0%), 271 peak-COVID (TPC=79.3%), and 56 post-peak (TPC<2%) (representation of PC consult: pre- and post-peak=samples; peak-COVID=all consults). Mean age was 69.3 years (standard deviation=15.5), with 54.9% male, 68.7% White, and 22.8% Black. Age and sex did not differ by period. PC consultations were more likely for goals of care (pre=30.0% vs. peak=53.9% vs. post=57.1%; P = 0.005) or hospice (4.0% vs. 14.4% vs. 5.4%, P = 0.031) during peak-COVID compared to pre-COVID. Rates of assessment of physical (98.0% vs. 63.5% vs. 94.6%, P < 0.001) and psychological symptoms (90.0% vs. 33.1% vs. 67.9%, P < 0.001) were lower during peak relative to pre-COVID and post-peak periods. There were no differences in assessment of patients' social needs, family burden, or goals of care across periods.Conclusion: The PC service provided high-quality inpatient PC using TPC despite significant strain during the early COVID-19 pandemic. Developing and testing strategies to promote comprehensive symptom control using TPC remains a priority to adjust to potential unmet PC needs. [ABSTRACT FROM AUTHOR]

1. Participants will self-report the ability to recognize the role of social determinants of health on the provision of home hospice care 2. Participants will self-report the ability to identify barriers related to social determinants of health on the provision of equitable home hospice care and potential mechanisms to mitigate them. This work investigates the role of Social Determinants of Health on the delivery of home hospice in NYC during COVID-19. Perspectives of interdisciplinary team members describe the challenges faced during the resourced challenged hospice pandemic experience. Participants detail how racial/ethnic minorities "bore the brunt" of the pandemic and provide insight to providing better care in the future. Social determinants of health (SDOH) impact the delivery of high-quality home hospice care. During the COVID-19 pandemic, home hospice interdisciplinary (IDT) members in New York City faced unprecedented care delivery challenges. To investigate the perspectives of home hospice IDT members on the impact of SDOH on the delivery of hospice care during the COVID-19 pandemic in New York City. In an NINR-funded study, we interviewed 30 IDT members (nurses, managers, administrators, physicians, medical directors, social workers, and clergy) from three organizations that provided end-of-life care in-person and through telehealth to older adults and their caregivers in NYC. Participants were provided with a definition of SDOH and then were asked 1)During the pandemic, did you provide care to individuals who experienced these conditions? 2) If so, did the conditions create a difficulty in providing the high-quality care that you aim to provide to all of your patients? Rapid qualitative content analysis was used to categorize findings and identify important adaptations that were required to provide hospice care during the pandemic. Findings reveal how organizations, providers, patients, and families were affected by the challenge of delivering home hospice care under differing social conditions in New York City during the COVID-19 surge. Participants detail how racial/ethnic minorities "bore the brunt" of the pandemic and provide insight to providing better care in the future. Two salient themes emerged: 1) Social determinants affect the delivery of equitable hospice care and 2) Social determinants create barriers to hospice. Subthemes with illustrative quotations delineate the concepts of differential hospice access, differential care, addressed and unaddressed challenges, and potential solutions for the future. These findings provide an opportunity to recognize the challenge of delivering equitable care to individuals with differing SDOH and the potential to integrate system level changes to address them. Diversity, Equity, Inclusion, Belonging, Justice / Ethical / Legal Aspects of Care [ABSTRACT FROM AUTHOR]

We provided an overview of the literature on decision aid interventions for family caregivers of older adults with advanced dementia regarding decision making about tube feeding. We synthesized (1) the use of theory during the development, implementation, and evaluation of decision aids; (2) the development, content, and delivery of decision aid interventions; (3) caregivers' experience with decision aid interventions; and (4) the effect of decision aid interventions on caregivers' quality of decision-making about feeding options. Scoping review. We conducted a scoping review of peer-reviewed studies published January 1, 2000–June 30, 2022, in MEDLINE, EMBASE, The Cochrane Library, CINAHL, and Web of Science databases. The process was guided by Arksey and O'Malley's methodological framework, which includes identifying the research question, choosing related studies, charting the data, and summarizing results. Empirical articles concerning the decision aid interventions about feeding options were selected. Six publications reporting 4 unique decision aid interventions were included. All the interventions targeted caregivers of older adults with advanced dementia. Three decision aids were culturally adapted from existing decision aids. The Ottawa Decision Support Framework and the International Patient Decision Aid Standards Framework were used in these 6 publications. Interventions aimed to improve decision making regarding tube feeding for caregivers through static delivery methods. Caregivers rated these decision aids as helpful and acceptable. Decisional conflict and knowledge of feeding options were the most common outcomes evaluated. Reduction in decisional conflict and increase in knowledge were consistently found among dementia caregivers, but no intervention effects were found on preferences for the use of tube feeding. Decision aid interventions effectively improve decision-making regarding tube feeding among the target population. Cultural adaptation of an existing decision aid intervention is the main strategy. However, the lack of guidance of a cultural adaptation framework in this process may lead to difficulties explaining caregivers' behavioral changes. Moreover, merely providing information is not enough to change caregivers' preferences or behavior of use of tube feeding. A systematic approach to cultural adaptation and interactive intervention is needed in future studies. [ABSTRACT FROM AUTHOR]

1. Upon successful completion, participants will be able to describe the current state of the science related to interventions and predictors that lead to hospice transitions for persons living with dementia. 2. Upon successful completion, participants will be able to understand gaps in the evidence related to hospice transitions and recommendations for future research. This review was conducted to examine interventions and predictors of hospice transition across settings for people living with dementia. While interventions focused on hospice decision-making are available, they are limited in number, scope, sample size, and racial and ethnic diversity. Hospice transitions occur late in illness trajectories for people with dementia and the evidence base is severely limited. When aligned with goals of care, persons living with dementia (PLWD) benefit from transition to hospice care at the end of life. However, interventions and predictors that facilitate high-quality, goal-concordant transition to hospice are understudied. This state-of-the-science review appraised evidence related to implemented interventions and predictors that lead to hospice transition for PLWD across healthcare settings and identified gaps to inform future research. Five databases were systematically searched (e.g., PubMed, CINAHL, Web of Science, Google Scholar, Cochrane Database for Systematic Reviews) for articles between 2000 and 2023. Search terms included MeSH terms and keywords focused on dementia, hospice care, transitions, care management, and/or coordination. After critical appraisal, 15 articles met inclusion criteria: 6 retrospective cohort studies; 3 secondary data analyses; 2 randomized control trials; 2 qualitative descriptive studies; 1 feasibility study; and 1 survey. Most were cross-sectional in design and centered around nursing home and hospital-based care in the US and Europe. The average age of PLWD and caregivers was 85.3 and 57.7, respectively. PLWD had multiple chronic conditions including cancer, diabetes, heart disease, and stroke. Interventions inclusive of hospice decision-making were delivered through video-assisted advance care planning and checklist-based care management and triggered palliative care for those with late-stage dementia. Predictors included increasing severity of illness including multisystem organ failure, transition to intensive care, do not resuscitate and life-sustaining treatment orders, insurance status, race and ethnicity, and caregiver burden. Overall, despite moderate to high-quality evidence, the studies were limited in scope and sample and lacked racial and ethnic diversity. This review highlights current evidence exploring interventions and predictors of hospice transitions. Prospective, multisite randomized trials and population-based analyses including larger and diverse samples, are needed for improved end-of-life care transitions for PLWD and their caregivers. Shared Decision Making / Advance Care Planning; Disease specific management [ABSTRACT FROM AUTHOR]

The Measuring What Matters (MWM) initiative identified 10 indicators of high-quality palliative and hospice care. Members of the AAHPM Research Committee, through a special series of articles, examined applications of the MWM quality indicators in research and practice settings. Many themes were present in these articles, including the important role of electronic health records in quality measurement, challenges and strategies for implementing and tracking measures over time, and the importance of identifying new measures. This article is the final commentary of the series and includes recommendations for next steps in quality measurement. [ABSTRACT FROM AUTHOR]

1. Describe the use of telehealth-delivered palliative care at one of the largest hospitals in New England during peak COVID-19 infection rates 2. Compare differences in care quality provided by in-person and telehealth-delivered palliative care In March 2020, in response to rapidly increasing COVID-19 infection rates, the palliative care (PC) service at one of the largest hospitals in New England quickly shifted from in-person to telehealth-delivered PC (TPC). We compared the quality of TPC relative to in-person PC during peak COVID-19 rates in the setting of high clinical demands for PC, requiring rapid implementation of TPC. We reviewed electronic health records of TPC and in-person consultation modalities of patients hospitalized between 3/2020 and 6/2020. We assessed established quality measures, including time from admission to inpatient PC consultation, interdisciplinary care, documented assessment at initial consultation of patient and family understanding of serious illness, and discussion of goals of care. Descriptive and bivariate statistics were used to describe differences by modality. Among 272 patients, mean age was 69.3 years (standard deviation = 18.3); 53% were male, 65% white, and 24% Black; 33% had primary cancer diagnoses; and 39% had COVID-19. Eighty percent of patients received TPC, and 20% received in-person PC. Median time from admission to PC consultation was 4.5 days (interquartile range 2-11). There were no differences between modalities by race, sex, or time from admission to PC consultation. Patients who received TPC were less likely to have cancer (25% vs 69%; p < 0.01). Patients who received TPC were slightly less likely to encounter more than 1 interdisciplinary PC team member (56% vs 61%) or to have a documented assessment of patient and family understanding of serious illness (60% vs 73%) or discussion of goals of care (71% vs 82%), though not statistically significant (p > 0.05). Although PC quality measures varied by modality, the PC service demonstrated the ability to provide high-quality TPC, even under significant strain during the early COVID-19 pandemic. Future work will evaluate opportunities to increase the quality of TPC beyond the initial pandemic surge and for sustained provision of TPC. [ABSTRACT FROM AUTHOR]

Context: As endorsed by the palliative care "Measuring What Matters" initiative, capturing patients' direct assessment of their care is essential for ongoing quality reporting and improvement. Fostering an environment where seriously ill patients feel heard and understood is of crucial importance to modern health care.Objectives: To describe the development and performance of a self-report field measure for seriously ill patients to report how well they feel heard and understood in the hospital environment.Methods: As part of a larger ongoing cohort study of inpatient palliative care, we developed and administered the following point-of-care item: "Over the past two days, how much have you felt heard and understood by the doctors, nurses and hospital staff?" (completely, quite a bit, moderately, slightly, not at all). Participants completed the measure before and the day after palliative care consultation. For the postconsultation version, we changed the time frame from "past two days" to "today."Results: One hundred sixty patients with advanced cancer completed the preconsultation assessment, and 87% of them completed the postconsultation version. Responses encompassed full use of the ordinal scale, did not exhibit ceiling or floor effects, and showed improvement from preassessment to postassessment. The item was quick to administer and easy for patients to complete.Conclusion: The "Heard & Understood" item is a promising self-report quality measure for the inpatient palliative care setting. [ABSTRACT FROM AUTHOR]

1. Explain the main trends in current state policymaking regarding palliative care 2. Identify the main opportunities for future reform in state policymaking regarding palliative care In the United States, state policies to advance palliative care (PC) access and quality have increased. The Palliative Care GPS Tracker, a collaboration between Yale Law School and the Center to Advance Palliative Care, was created to track and evaluate state legislative policy trends, inform PC policy research, encourage policy innovation to ameliorate disparities in access, and help reform PC quality and education. We examined states' PC legislation and analyzed trends to inform PC policymaking. We compiled counts of legislation in each state and the District of Columbia from 2019 to 2021, grouping pieces of legislation by year into seven categories: workforce, payment, quality and standards, clinical skill building, public awareness, telemedicine, and pediatric palliative care. We calculated descriptive statistics and performed bivariate regression to identify potential associations. 2019 was the most active year for PC legislation, with 170 pieces of legislation considered by legislatures across states. From 2019 to 2021, the most legislation nationally pertained to quality and standards (34%), followed by payment policies (21%). Pediatric PC policy was least common (3%). Telemedicine PC policies increased significantly, from 4% of all legislation in 2019 to 19% in 2021 (p < 0.001). States with the most pieces of PC legislation introduced were Hawaii (n = 13) in 2019, New Jersey (n = 12) in 2020, and Georgia (n = 5) in 2021. No PC legislation developments were introduced in 4 states in 2019, 14 states in 2020, and in 24 states in 2021. Data provide an overview of which states are adopting PC policies over time and how. Telemedicine policies have seen the most growth, probably in response to the COVID-19 pandemic. Continued development of the Tracker to include all years of PC legislation will enable more in-depth monitoring of PC policies. Better understanding trends in policymaking can improve effective advocacy and expand access to PC throughout the country. [ABSTRACT FROM AUTHOR]

1. Describe the most common health-illness transitions experienced by patients with pancreatic cancer 2. Describe the relationship between management of health-illness transitions and psychological distress Health-illness transitions (HITs) include care transitions (changes in cancer status, treatment, or goals of care) and personal transitions (physical, emotional, social, or spiritual changes). Management of HITs is an important self-management skill because unmanaged HITs can increase distress. HITs experienced during pancreatic cancer have not been previously described, and patients with pancreatic cancer may have an abbreviated opportunity to learn self-management of HITs. To elucidate how patients with pancreatic cancer experience and manage HITs and whether HITs are associated with distress. We enrolled patients with pancreatic cancer undergoing chemotherapy at Memorial Sloan Kettering Cancer Center. We assessed extent and management of HITs via the Measurement of Transitions in Cancer Scale and evaluated psychological distress via the Distress Thermometer (DT). Open-ended questions explored transitions not captured by the existing scale and the influence of COVID-19 on experience and management of HITs. Descriptive statistics were used to summarize demographic and clinical characteristics, HIT variables, and distress scores. We calculated Spearman's correlations between distress and unmanaged transitions and used thematic analysis for examination of qualitative data. Among 55 participants (median age = 70; 98% pancreatic adenocarcinoma; median time since diagnosis = 4 months), all experienced at least 1 HIT and managed transitions moderately well. Physical (95%) and emotional (93%) transitions were most common. Unmanaged transitions and distress were correlated; severely distressed participants (7-10 on the DT) reported more HITs and worse management. Participants suggested new transition types: financial and caregiver. COVID-19 increased distress and complicated transition management. Participants reported that HITs made self-management more difficult and identified facilitators and barriers. Patients with pancreatic cancer experience multiple HITs, which, when unmanaged, are associated with distress. Findings about HITs can inform interventions targeting self-management skill building to alleviate distress and improve quality of life among patients with pancreatic cancer. Because HITs may vary for patients with different cancers, cancer-specific examination and intervention development will be needed. [ABSTRACT FROM AUTHOR]