Dena Schulman-Green

Abstract

Context: The critical role of hospice and palliative care in response to the COVID-19 pandemic is well recognized, but there is limited evidence to guide healthcare leadership through future crises. Objectives: Our goal was to support future organizational resilience by exploring hospice and palliative team members’ perspectives on crisis leadership during the COVID-19 pandemic in New York City (NYC). Methods: This qualitative descriptive study used individual, semi-structured interviews of purposively sampled interdisciplinary team members. Enrollment sites were two large NYC metro hospice care organizations and one outpatient palliative care practice. We asked participants to complete a demographic form and a 45–60 minute interview. We used descriptive statistics and thematic analysis, respectively, for data analysis. We triangulated the data by presenting preliminary study findings to a group of clinicians (n=21) from one of the referring organizations. Results: Participants (n=30) were professionally diverse (e.g., nurses, physicians, social workers, chaplains, administrators), experienced (mean=17 years; 10 years in hospice), and highly educated (83% ≥ master's degree). About half (n=15) self-identified as white, non-Hispanic, and nearly half (n=13) self-identified as being from a racial/ethnic minoritized group. Two (n=2) did not wish to self-identify. We identified four themes that reflected challenges and adaptive responses to providing care during a crisis: Stay Open and Stay Safe; Act Flexibly; Lead Adaptively; and Create a Culture of Solidarity. Conclusion: While additional work is indicated, findings offer direction for a crisis management playbook to guide leadership in hospice, palliative care, and other healthcare settings in future crises.

Abstract

Introduction: Although prostate magnetic resonance imaging (MRI) is commonly used in the diagnosis, staging and active surveillance of prostate cancer, little is known about patient perspectives on MRI. Methods: We performed a qualitative study consisting of in-depth, semi-structured interviews of patients with low- and intermediate-risk prostate cancer managed with active surveillance. Interviews focused on experiences with and knowledge of prostate MRI and MRI-ultrasound fusion biopsy during active surveillance. We purposively sampled patients who received prostate MRI as part of their clinical care, conducted interviews until reaching thematic saturation and performed conventional content analysis to analyse data. Results: Twenty patients aged 51–79 years (mean = 68 years) participated in the study. At diagnosis, 17 (85%) had a Gleason grade group 1, and three (15%) had a grade group 2 tumour. Overall, participants viewed prostate MRI as a valuable tool that accurately localizes and monitors prostate cancer over time, and they considered prostate MRI central to active surveillance monitoring. We identified five thematic categories related to MRI use: (1) the experiential aspects of undergoing an MRI scan; (2) the experience of visualizing one's own prostate and prostate cancer; (3) adequacy of provider explanations of MRI results; (4) confidence in prostate MRI in decision-making; and (5) the role of prostate MRI in longitudinal follow-up, including an interest in using MRI to modify the timing of, or replace, prostate biopsy. Conclusion: Patients value prostate MRI as a tool that enhances their confidence in the initial diagnosis and monitoring of prostate cancer. This work can inform future studies to optimize patient experience, education and counselling during active surveillance for prostate cancer.

Abstract

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 modified and extended 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

Background: CommunityRx is an evidence-based social care intervention delivered to family and friend caregivers (“caregivers”) at the point of healthcare to address health-related social risks (HRSRs). Two CommunityRx randomized controlled trials (RCTs) are being fielded concurrently on Chicago’s South Side, a predominantly African American/Black community. CommunityRx-Hunger is a double-blind RCT enrolling caregivers of hospitalized children. CommunityRx-Dementia is a single-blind RCT enrolling caregivers of community-residing people with dementia. RCTs with caregivers face recruitment barriers, including caregiver burden and lack of systematic strategies to identify caregivers in clinical settings. COVID-19 pandemic-related visitor restrictions exacerbated these barriers and prompted the need for iteration of the protocols from in-person to remote operations. This study describes these protocols and methods used for successful iteration to overcome barriers. Methods and findings: CommunityRx uses individual-level data to generate personalized, local community resource referrals for basic, health and caregiving needs. In early 2020, two in-person RCT protocols were pre-tested. In March 2020, when pandemic conditions prohibited face-to-face clinical enrollment, both protocols were iterated to efficient, caregiver-centered remote operations. Iterations were enabled in part by the Automated Randomized Controlled Trial Information-Communication System (ARCTICS), a trial management system innovation engineered to integrate the data collection database (REDCap) with community resource referral (NowPow) and SMS texting (Mosio) platforms. Enabled by engaged Community Advisory Boards and ARCTICS, both RCTs quickly adapted to remote operations. To accommodate these adaptations, launch was delayed until November (CommunityRx-Hunger) and December (CommunityRx-Dementia) 2020. Despite the delay, 65% of all planned participants (CommunityRx-Hunger n = 417/640; CommunityRx-Dementia n = 222/344) were enrolled by December 2021, halfway through our projected enrollment timeline. Both trials enrolled 13% more participants in the first 12 months than originally projected for in-person enrollment. Discussion: Our asset-based, community-engaged approach combined with widely accessible institutional and commercial information technologies facilitated rapid migration of in-person trials to remote operations. Remote or hybrid RCT designs for social care interventions may be a viable, scalable alternative to in-person recruitment and intervention delivery protocols, particularly for caregivers and other groups that are under-represented in traditional health services research. Trial registration: ClinicalTrials.gov: CommunityRx-Hunger (NCT04171999, 11/21/2019); CommunityRx for Caregivers (NCT04146545, 10/31/2019).

Abstract

Background: State policy-making to address disparities in access to and quality of palliative care is increasing. Yet, there is no mechanism to systematically assess palliative care policies nationally. Methods: We describe the development of the Palliative Care Law and Policy GPS by the Center to Advance Palliative Care and the Yale Solomon Center for Health Law and Policy. The GPS is an online, searchable repository of national palliative care policies. We developed the GPS by conducting a systematic search of Lexis+, LegiScan, and state health departments for palliative care-related statutes and proposed legislation, categorizing policies into workforce, payment, quality/standards, clinical skill-building, public awareness, telehealth, and pediatric palliative care, and creating an interactive website. Conclusions and Implications: The GPS is a critical tool that can advance palliative care research, practice, and policy. Next steps include the expansion of data from 2010 onward as well as gathering state-level regulations and partially automating search and updating functions.

Abstract

OBJECTIVES: To explore the correlation between health–illness transition (HIT) experiences and distress among patients with pancreatic cancer. SAMPLE & SETTING: 55 patients with a diagnosis of pancreatic cancer receiving chemotherapy at a tertiary cancer center in New York. METHODS & VARIABLES: A prospective correlational study was performed to explore the frequency, extent, and management of HITs. HITs were evaluated using the Measurement of Transitions in Cancer Scale, and distress was measured with the National Comprehensive Cancer Network Distress Thermometer. RESULTS: All patients experienced at least one HIT. The extent of HITs decreased over time. Patients reported that they managed HITs moderately well. There was a significant correlation between unmanaged HITs and distress. As distress increased, the extent of the physical and emotional HITs increased and management worsened. IMPLICATIONS FOR NURSING: HITs are ubiquitous among patients diagnosed with pancreatic cancer. Associated distress inhibits management. Nurses are well suited to assess for potential HITs and to support self-management of HITs.

Abstract

Self- and family management (SFM) refers to patients’ and family caregivers’ activities to co-manage illness. Two barriers to SFM are low palliative care literacy and lack of goals of care communication, which potentially result in SFM activities that are unsupportive of patients’ goals. Managing Cancer Care: A Caregiver’s Guide (MCC-CG) aims to improve palliative care literacy and communication within a SFM training program. In this pilot randomized trial, we enrolled breast cancer family caregivers and collected data at 0, 1, and 3 months on palliative care literacy, SFM engagement, communication, transitions management, uncertainty, caregiver burden, and caregiver competence/personal gain. Participants (n = 35) had a mean age of 54 (range: 18–81) and were 66% white and 34% racial/ethnic minorities. Intervention participants improved their palliative care literacy and SFM engagement, reduced uncertainty and caregiver burden, increased competence/personal gain, and had more goals of care conversations over time. MCC-CG has preliminary efficacy, warranting further study.

Abstract

Background Breast cancer patients may not be well-informed about palliative care, hindering its integration into cancer self-management. Objective The aim of this study was to test Managing Cancer Care: A Personal Guide (MCC-PT), an intervention to improve palliative care literacy and cancer self-management. Methods This was a single-blind pilot randomized controlled trial to evaluate the feasibility/acceptability and intervention effects of MCC-PT on palliative care literacy, self-management behaviors/emotions, and moderation by demographic/clinical characteristics. We enrolled 71 stages I to IV breast cancer patients aged at least 21 years, with >6-month prognosis at an academic cancer center. Patients were randomized to MCC-PT (n = 32) versus symptom management education as attention-control (n = 39). At baseline, 1 month, and 3 months, participants completed the Knowledge of Care Options Test (primary outcome), Control Preferences Scale, Goals of Care Form, Medical Communication Competence Scale, Measurement of Transitions in Cancer Scale, Chronic Disease Self-efficacy Scale, Hospital Anxiety and Depression Scale, and the Mishel Uncertainty in Illness Scale. Results Mean participant age was 51.5 years (range, 28-74 years); 53.5% were racial/ethnic minority patients, and 40.8% had stage III/IV cancer. After adjusting for race/ethnicity, MCC-PT users improved their palliative care literacy with a large effect size (partial η2 = 0.13). Patients at late stage of disease showed increased self-management (partial η2 = 0.05) and reduced anxiety (partial η2 = 0.05) and depression (partial η2 = 0.07) with medium effect sizes. Conclusions Managing Cancer Care: A Personal Guide is feasible and appears most effective in late-stage cancer. Research is needed to elucidate relationships among cancer stage, race/ethnicity, and self-management outcomes. Implications for Practice Integration of palliative care into cancer care can assist in creation of appropriate self-management plans and improve emotional outcomes.

Abstract

Aim: Establish linkages between components of the Self- and Family Management Framework and outcomes of the Nursing Outcomes Classification to evaluate the comprehensiveness of outcomes addressing self- and family management in the Nursing Outcomes Classification. Design: Descriptive study. Methods: Experts conducted a six-step process to establish linkages: (1) preliminary mapping of all relevant nursing outcomes to the framework; (2) development of checklists for team members serving as ‘identifiers’ and ‘reviewers’; (3) mapping all relevant nursing outcomes to the framework; (4) final agreement on mapped outcomes; (5) establishment of inter-rater reliability; and (6) discussion of findings with authors of the Self- and Family Management Framework. Results: Three hundred and sixty-three nursing outcomes were identified as related to the management of chronic disease across all components of the framework: outcomes related to patient self-management (n = 336), family functioning (n = 16) and family caregivers (n = 11). Conclusion: The Nursing Outcomes Classification outcomes comprehensively address self-management, and, less so, family functioning, and caregivers. Implications: Established linkages can be used by nurses to track and support patient and family management outcomes across the care continuum. Patient or public contribution: Linking standardized nursing outcomes to the Self- and Family Management Framework can assist in goal setting and measurement of nursing care during chronic disease management. This work can help describe to funders, policy makers and others invested in health care reform the specific contributions of nurses to self- and family management of chronic disease. Impact: This paper demonstrates the linkages between components of the Self- and Family Management Framework and Nursing Outcomes Classification outcomes. The results of this study offer the opportunity to quantify the impact of nursing care and enhance nursing practice for patients with chronic conditions as well as contribute to developing Nursing Outcomes Classification outcomes that consider self-management processes.

Abstract

Background: 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. Purpose: In this article, we reintroduce the Self- and Family Management Framework as the Middle Range Theory of Self- and Family Management of Chronic Illness. Methods: 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. Discussion and Conclusion: 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.