Dena Schulman-Green

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

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

Background: In Israel, there is a need to improve quality of life and health outcomes among patients and families facing cancer. Increasing awareness of, literacy about, and availability of palliative care may further this goal. Aims:This study aimed to adapt a palliative care-focused cancer self- and family management intervention developed in the US for use in Israel. Methods: The Managing Cancer Care (MCC) psycho-educational intervention is comprised of Managing Cancer Care: A Personal Guide (MCC-PT©) for patients and Managing Cancer Care: A Caregiver's Guide (MCC-CG©) for family caregivers. Following translation into Hebrew, an expert panel of Israeli nurses edited the MCC tool for cultural relevance. The authors then conducted qualitative interviews with patients with breast cancer and their family caregivers to obtain feedback. Data were analysed using qualitative content analysis. Findings: Following recommendations from Israeli experts in oncology and/or palliative care (n=3), the authors revised intervention content specific to the US healthcare system and culture. Patients' (n=13) and family caregivers' (n=10) reported MCC as attractive (70%, 80%), topically relevant (80%, 70%), and culturally appropriate, but felt that palliative care resources should be more Israel-specific. Conclusion:The MCC tool is acceptable to potential users, warranting further pilot-testing.

Abstract

Objectives: 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. Design: Scoping review. Methods: 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. Results: 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. Conclusions and Implications: 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

Background: 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. Purpose: We describe perspectives and recommendations of mentee and mentor recipients of diversity supplements. Methods: 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. Discussion: 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. Conclusion: 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

OBJECTIVES: To characterize the needs and preferences for pain self-management support (SMS) among patients with cancer during the transition of cancer care from the hospital to the home setting. SAMPLE & SETTING: 38 participants with cancer pain at a research-intensive cancer center in New England. METHODS & VARIABLES: A descriptive, crosssectional survey study was conducted to investigate relationships among preferred and received support, extent and management of transitional change, and pain outcomes. Pain intensity and interference were measured using the Brief Pain Inventory-Short Form, transitional change was measured using the Measurement of Transitions in Cancer Scale, and SMS was measured using dichotomous questions. RESULTS: About half of participants reported concordance between preferred and received cancer pain SMS in the hospital and at home. The extent of transitional change in cancer care was found to be a significant predictor of average pain intensity in the hospital and pain interference at home. Satisfaction with cancer pain SMS was a significant predictor of pain intensity at home. IMPLICATIONS FOR NURSING: The extent of change during care transitions should be considered when fulfilling patient needs and preferences for cancer pain SMS to optimize outcomes.

Abstract

Background: The ability to rate delirium severity is key to providing optimal care for persons with Alzheimer's Disease and Related Dementias (ADRD). Such ratings would allow clinicians to assess response to treatment, recovery time and prognosis, nursing burden and staffing needs, and to provide nuanced, appropriate patient-centered care. Given the lack of existing tools, we defined content domains for a new delirium severity instrument for use in individuals with mild to moderate ADRD, the DEL-S-AD. Methods: We built upon our previous study in which we created a content domain framework to inform development of a general delirium severity instrument, the DEL-S. We engaged a new expert panel to discuss issues of measurement in delirium and dementia and to determine which content domains from the prior framework were useful in characterizing delirium severity in ADRD. We also asked panelists to identify new domains. Our panel included eight interdisciplinary members with expertise in delirium and dementia. Panelists participated in two rounds of review followed by two surveys over 2 months. Results: Panelists endorsed the same content domains as for general delirium severity, including Cognitive, Level of Consciousness, Inattention, Psychiatric-Behavioral, Emotional Dysregulation, Psychomotor Features, and Functional; however, they excluded six of the original subdomains which they considered unhelpful in the context of ADRD: cognitive impairment; anxiety; fear/sense of unease; depression; gait/walking; and incontinence. Debated measurement challenges included assessment at one point in time versus over time, accounting for differences in clinical settings, and accurate assessment of symptoms related to delirium versus dementia. Conclusions: By capturing a range of characteristics of delirium severity potentially present in patients with ADRD, a population that may already have attention, functional, and emotional changes at baseline, the DEL-S-AD provides a novel rating tool that will be useful for clinical and research purposes to improve patient care.