Dena Schulman-Green

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.

Abstract

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

Background: 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. Purpose: We conducted a sub-analysis of quantitative articles in the citation analysis to examine testing of relationships depicted in the SFMF. Methods: We analyzed study purposes, independent and dependent variables, study implications, and text that referred to the SFMF in 40 articles. Findings: 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. Discussion: Findings will contribute to revision of the SFMF.

Abstract

Objective: To investigate mental health needs and barriers to seeking mental health support in Medicaid-funded Assisted Living Facility (M-ALF). Design: A multimethod, qualitative-dominant descriptive design using questionnaires and semistructured interviews. Setting and Participants: 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. Methods: 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. Results: 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). Conclusion and Implications: 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.