Dena Schulman-Green

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.

Abstract

Background: 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. Purpose: We describe perspectives of NIH program/diversity officers and university research administrators offering recommendations for diversity supplement submission. Methods: 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. Findings: 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. Discussion: 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

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

Self-management of chronic disease and related symptoms provides a framework for understanding the contextual factors that influence self-management knowledge and skills that patients and families require to manage their condition on a day-to-day basis. The management of cancer pain is a significant issue for patients and families, and their experience can provide insight on cancer pain self-management support needs and preferences. A meta-synthesis of 20 qualitative research articles on self-management of cancer pain was conducted to gain a deeper understanding of the self-management support needs of patients with cancer pain. Noblit and Hare’s meta-ethnographic model was used. The meta-synthesis resulted in increased understanding of the needs and preferences for self-management support of cancer pain and the role of the health care practitioner. Practical implications are presented.

Abstract

Family caregivers play an integral role in supporting patient self-management, yet how they perform this role is unclear. We conducted a qualitative metasynthesis of family caregivers’ processes to support patient self-management of chronic, life-limiting illness and factors affecting their support. Methods included a systematic literature search, quality appraisal of articles, data abstraction, and data synthesis to produce novel themes. Thirty articles met inclusion criteria, representing 935 international family caregivers aged 18 to 89 years caring for patients with various health conditions. Three themes characterized family caregivers’ processes to support patient self-management: “Focusing on the Patient’s Illness Needs,” “Activating Resources to Support Oneself as the Family Caregiver,” and “Supporting a Patient Living with a Chronic, Life-Limiting Illness.” Factors affecting family caregivers’ support included Personal Characteristics, Health Status, Resources, Environmental Characteristics, and the Health Care System. The family caregiver role in supporting patient self-management is multidimensional, encompassing three processes of care and influenced by multiple factors.

Abstract

Introduction Incarceration is associated with decreased cancer screening rates and a higher risk for hospitalisation and death from cancer after release from prison. However, there is a paucity of data on the relationship between incarceration and cancer outcomes and quality of care. In the Incarceration and Cancer-Related Outcomes Study, we aim to develop a nuanced understanding of how incarceration affects cancer incidence, mortality and treatment, and moderates the relationship between socioeconomic status, structural racism and cancer disparities. Methods and analysis We will use a sequential explanatory mixed-methods study design. We will create the first comprehensive linkage of data from the Connecticut Department of Correction and the statewide Connecticut Tumour Registry. Using the linked dataset, we will examine differences in cancer incidence and stage at diagnosis between individuals currently incarcerated, formerly incarcerated and never incarcerated in Connecticut from 2005 to 2016. Among individuals with invasive cancer, we will assess relationships among incarceration, quality of cancer care and mortality, and will assess the degree to which incarceration status moderates relationships among race, socioeconomic status, quality of cancer care and cancer mortality. We will use multivariable logistic regression and Cox survival models with interaction terms as appropriate. These results will inform our conduct of in-depth interviews with individuals diagnosed with cancer during or shortly after incarceration regarding their experiences with cancer care in the correctional system and the immediate postrelease period. The results of this qualitative work will help contextualise the results of the data linkage. Ethics and dissemination The Yale University Institutional Review Board (#2000022899) and the Connecticut Department of Public Health Human Investigations Committee approved this study. We will disseminate study findings through peer-reviewed publications and academic and community presentations. Access to the deidentified quantitative and qualitative datasets will be made available on review of the request.