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BACKGROUND: Limited guidance exists for analyzing participant engagement in provider-guided digital health interventions (DHIs). System usage is commonly assessed, with acknowledged limitations in measuring socio-affective and cognitive aspects of engagement. Nurse WRITE, an 8-week web-based nurse-guided DHI for managing symptoms among women with recurrent ovarian cancer, offers an opportunity to develop a framework for assessing multidimensional engagement. OBJECTIVE: This study aims to develop a conceptual and analytic framework to measure socio-affective, cognitive, and behavioral engagement with provider-guided DHIs. We then illustrate the framework's ability to describe and categorize engagement using Nurse WRITE as an example. METHODS: A sample of 68 participants from Nurse WRITE who posted on the message boards were included. We adapted a prior framework for conceptualizing and operationalizing engagement across 3 dimensions and finalized a set of 6 distinct measures. Using patients' posts, we created 2 socio-affective engagement measures-total count of socio-affective engagement classes (eg, sharing personal experience) and total word count-and 2 cognitive engagement measures-total count of cognitive engagement classes (eg, asking information-seeking questions) and average question completion percentage. Additionally, we devised behavioral engagement measures using website data-the total count of symptom care plans and plan reviews. k-Means clustering categorized the participants into distinct groups based on levels of engagement across 3 dimensions. Descriptive statistics and narratives were used to describe engagement in 3 dimensions. RESULTS: On average, participants displayed socio-affective engagement 34.7 times, writing 14,851 words. They showed cognitive engagement 19.4 times, with an average of 78.3% completion of nurses' inquiries. Participants also submitted an average of 1.6 symptom care plans and 0.7 plan reviews. Participants were clustered into high (n=13), moderate (n=17), and low engagers (n=38) based on the 6 measures. High engagers wrote a median of 36,956 (IQR 26,199-46,265) words. They demonstrated socio-affective engagement approximately 81 times and cognitive engagement around 46 times, approximately 6 times that of the low engagers and twice that of the moderate engagers. High engagers had a median of 91.7% (IQR 82.2%-93.7%) completion of the nurses' queries, whereas moderate engagers had 86.4% (IQR 80%-96.4%), and low engagers had 68.3% (IQR 60.1%-79.6%). High engagers completed a median of 3 symptom care plans and 2 reviews, while moderate engagers completed 2 plans and 1 review. Low engagers completed a median of 1 plan with no reviews. CONCLUSIONS: This study developed and reported an engagement framework to guide behavioral intervention scientists in understanding and analyzing participants' engagement with provider-guided DHIs. Significant variations in engagement levels across 3 dimensions highlight the importance of measuring engagement with provider-guided DHIs in socio-affective, cognitive, and behavioral dimensions. Future studies should validate the framework with other DHIs, explore the influence of patient and provider factors on engagement, and investigate how engagement influences intervention efficacy.
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A community engaged research (CER) approach was used to provide an exposure assessment of poly- and perfluorinated (PFAS) compounds in North Carolina residential drinking water. Working in concert with community partners, who acted as liaisons to local residents, samples were collected by North Carolina residents from three different locations along the Cape Fear River basin: upper, middle, and lower areas of the river. Residents collected either drinking water samples from their homes or recreational water samples from near their residence that were then submitted by the community partners for PFAS analysis. All samples were processed using weak anion exchange (WAX) solid phase extraction and analyzed using a non-targeted suspect screening approach as well as a quantitative approach that included a panel of 45 PFAS analytes, several of which are specific to chemical industries near the collection site locations. The non-targeted approach, which utilized a suspect screening list (obtained from EPA CompTox database) identified several PFAS compounds at a level two confidence rating (Schymanski scale); compounds identified included a fluorinated insecticide, a fluorinated herbicide, a PFAS used in polymer chemistry, and another that is used in battery production. Notably, at several locations, PFOA (39.8 ng/L) and PFOS (205.3 ng/L) were at levels that exceeded the mandatory EPA maximum contaminant level (MCL) of 4 ng/L. Additionally, several sites had detectable levels of PFAS that are unique to a local chemical manufacturer. These findings were communicated back to the community partners who then disseminated this information to the local residents to help empower and aid in making decisions for reducing their PFAS exposure.
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INTRODUCTION: Older cancer survivors are at increased risk for impaired physical functioning, but current assessments of function are difficult to implement in busy oncology clinics. Mobile devices measuring continuous activity and mobility in daily life may be useful for estimating physical functioning. The goal of this pilot study was to examine the associations between consumer wearable device (a wrist-worn activity tracker) and smartphone sensor data and commonly used clinical measures of physical function in cancer survivors aged 65 and older. MATERIALS AND METHODS: Older adults within five years of completing primary treatment for any cancer completed standardized questionnaires and performance-based tests to measure physical functioning. Continuous passive data from smartphones and consumer wearable devices were collected for four weeks and linked to patient-reported and performance-based physical functioning as well as patient-reported falls or near falls at the end of the four-week monitoring period. To examine associations between sensor variables and physical functioning, we conducted bivariate Pearson correlations as well as multivariable linear regression analyses. To examine associations between sensor variables and falls, we conducted exploratory receiver operating characteristic curve and multivariable logistic regression analyses. RESULTS: We enrolled 40 participants (mean age 73 years old, range 65-83; 98% White; 50% female). In bivariate analyses, consumer wearable device features reflecting greater amount and speed and lower fragmentation of walking in daily life were significantly related to better patient-reported function (r= 0.43-0.65) and performance-based physical function (r = 0.56-0.72), while smartphone features reflecting more geographic mobility were related to better performance-based physical function (r = 0.40-0.42) but not patient-reported function. After adjusting for age and comorbidities, only consumer wearable device features remained associated with performance-based physical functioning. In exploratory analyses, peak gait cadence was associated with fall risk even after covariate adjustment. DISCUSSION: This study provides preliminary evidence that real-world data from consumer devices may be useful for estimating functional performance among older cancer survivors and potentially for remotely and longitudinally monitoring functioning in older patients during and after cancer treatment.
Subject(s)
Cancer Survivors , Neoplasms , Wearable Electronic Devices , Humans , Female , Aged , Aged, 80 and over , Male , Pilot Projects , Gait , Patient Reported Outcome Measures , Neoplasms/therapyABSTRACT
BACKGROUND: Pain and mood disturbances, such as anxiety and depression, are common symptoms in gynecologic cancer. Their associations and the role of personality traits in pain adaptation during chemotherapy remain unclear. This ancillary data analysis aimed to investigate these relationships. AIM: To (1) depict the temporal trend of daily pain severity; (2) evaluate dynamic associations between mood and pain; and (3) explore personality traits (neuroticism and conscientiousness) as moderators of the mood-pain relationship during chemotherapy for gynecologic cancer. METHOD: Symptom severity was assessed daily throughout chemotherapy, while personality, clinical, and demographic characteristics were assessed at baseline. Twenty-seven women with gynecologic cancer who completed daily symptom assessments for at least four cycles were included in the analyses. RESULTS: Pain severity decreased slightly during chemotherapy. Multilevel modeling supported significant associations between pain and anxiety (b = 0.24, standard error [SE] = 0.06, p = .001) and depression (b = 0.30, SE = 0.08, p = .002). Time-varying effect modeling showed significant associations between anxiety and pain that initially increased and then decreased; and significant associations between depression and pain steadily decreased over the first four cycles of chemotherapy. Neuroticism moderated the association between anxiety and pain (b = 0.15, SE = 0.06, p < .05), with anxiety more strongly associated with pain in those with higher neuroticism. CONCLUSIONS: This study highlights the dynamic nature of pain and its associations with anxiety and depression in individuals with gynecologic cancer undergoing chemotherapy. The findings have implications for understanding pain and developing tailored psychosocial symptom management interventions to prevent pain during chemotherapy.
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Neoplasms , Pain , Humans , Female , Affect , Anxiety/psychology , Personality , Depression/etiology , Depression/psychologyABSTRACT
Family and friend caregivers play critical roles in ensuring that persons with serious illness receive high-quality care, and their responsibilities often increase as patients transition from receiving solely curative-focused care to primarily palliative-focused care. Integrating family caregivers into the health care team and supporting them in their role has significant benefits for family caregivers, patients, health care systems, communities, and society. Palliative care clinicians across all disciplines are uniquely suited to provide necessary training and support to family caregivers as they navigate the demands of their role. Here, we contend that providing comprehensive palliative care includes addressing the needs of family caregivers and provide ten tips and practical guidance to assist palliative care clinicians to support family caregivers. Engaging family caregivers as partners in care will ultimately allow palliative care clinicians to deliver the highest quality patient care and ensure the best possible outcomes for families facing serious illnesses.
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Caregivers , Palliative Care , Humans , Caregivers/psychology , Male , Female , Middle Aged , Adult , AgedABSTRACT
ABSTRACT: Clear reporting of cancer rehabilitation interventions is critical for interpreting and translating research into clinical practice. This study sought to examine the completeness of intervention reporting of cancer rehabilitation interventions addressing disability and to identify which elements are most frequently missing. This was a secondary analysis of randomized controlled trials included in two systematic reviews examining effectiveness of cancer rehabilitation interventions that address cancer-related disability, including functional outcomes. Eligible trials were reviewed for intervention reporting rigor using the Criteria for Reporting the Development and Evaluation of Complex Interventions in Healthcare 2 checklist. Intervention descriptions for cancer rehabilitation interventions were generally incomplete. Approximately 85% ( n = 157) of trials described ≤50% of Criteria for Reporting the Development and Evaluation of Complex Interventions in Healthcare 2 checklist items. Commonly underreported items included description of the intervention's underlying theoretical basis, fidelity, description of process evaluation or external conditions influencing intervention delivery, and costs or required resources for intervention delivery. The findings reveal that cancer rehabilitation intervention descriptions lacked necessary detail in this body of literature. Poor descriptions limit the translation of research to clinical practice. To ensure higher-quality study design and reporting, future intervention research should incorporate an intervention reporting checklist to ensure more complete descriptions for research and practice.
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OBJECTIVES: Mid-life family caregivers (CGs) are at risk for participation restriction, which can worsen quality of care for care recipients (CR) and increase CG burden and poor health. We aimed to identify factors associated with participation restriction in mid-life CGs. METHODS: This was a cross-sectional study of CGs aged 40-64 years (n = 1100) from the 2015 cohort of the National Study of Caregiving (NSOC)/National Health and Aging Trends Study (NHATS). Multivariate logistic regression was used to evaluate personal and caregiving attributes associated with restricted participation. RESULTS: Individual items from the negative and Positive aspects of caregiving (PAC) scales were associated with participation restriction. Mid-life caregivers with "frequent changes to caregiving routine" and "no time for self" were more likely to report restricted participation and those feeling "closer to the CR" were less likely to report restricted participation. DISCUSSION: Interventions to optimize caregiving routines and improve dyadic relationships could decrease participation restriction in mid-life CGs.
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Aging , Caregivers , Humans , Cross-Sectional Studies , EmotionsABSTRACT
PURPOSE: To characterize delivery features and explore effectiveness of telehealth-based cancer rehabilitation interventions that address disability in adult cancer survivors. METHODS: A systematic review of electronic databases (CINAHL Plus, Cochrane Library: Database of Systematic Reviews, Embase, National Health Service's Health Technology Assessment, PubMed, Scopus, Web of Science) was conducted in December 2019 and updated in April 2021. RESULTS: Searches identified 3,499 unique studies. Sixty-eight studies met inclusion criteria. There were 81 unique interventions across included studies. Interventions were primarily delivered post-treatment and lasted an average of 16.5 weeks (SD = 13.1). They were most frequently delivered using telephone calls (59%), administered delivered by nursing professionals (35%), and delivered in a one-on-one format (88%). Risk of bias of included studies was primarily moderate to high. Included studies captured 55 measures of disability. Only 54% of reported outcomes had data that allowed calculation of effect sizes ranging -3.58 to 15.66. CONCLUSIONS: The analyses suggest small effects of telehealth-based cancer interventions on disability, though the heterogeneity seen in the measurement of disability makes it hard to draw firm conclusions. Further research using more diverse samples, common measures of disability, and pragmatic study designs is needed to advance telehealth in cancer rehabilitation. IMPLICATIONS FOR CANCER SURVIVORS: Telehealth-based cancer rehabilitation interventions have the potential to increase access to care designed to reduce disability across the cancer care continuum.
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Cancer Survivors , Neoplasms , Telemedicine , Adult , Humans , Delivery of Health Care , State MedicineABSTRACT
PURPOSE: The impact of the social determinants of health (SDOH) on hospitalized cancer patients and hospital length of stay is unknown. At our institution, a hospital-wide SDOH survey that examined patient-specific barriers to various domains of SDOH and facilitated hospital discharge was integrated into the electronic medical record. This study reports the effect of the SDOH survey on length of stay for oncology patients and the outpatient referrals generated to facilitate the discharge. METHODS: We examined length of stay index data on inpatient oncology patients and 2 comparator services (bone marrow transplant, internal medicine). We evaluated the length of stay using a 2-sample t test, and the rate of referrals per discharge using a 2-sample Poisson test. RESULTS: Compared to the baseline length of stay, after the launch of the SDOH survey, there was a significant (8.9%) decrease in the average length of stay for oncology patients (8.14 to 7.41 days, P = 0.004), the LOS decrease for the bone marrow transplant and subset was a nonsignificant trend only (P > 0.1). Average referrals per discharge increased from baseline 1.063 per discharge to 1.159 after implementation (P = 0.004), and the mean values increased by 9%. CONCLUSIONS: The SDOH survey tool assisted in a timely examination of patient-specific barriers to discharge, leveraged care coordination, and facilitated a safe hospital discharge. Such efforts increase the efficiency of health care service delivery in response to public health threats, such as the COVID-19 pandemic.
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COVID-19 , Neoplasms , Humans , Length of Stay , COVID-19/epidemiology , Social Determinants of Health , Pandemics , Neoplasms/epidemiology , Neoplasms/therapy , HospitalsABSTRACT
As of 2022, close to 90 million persons in the United States, 243 million persons in Europe and 585 million worldwide have been infected with the novel SARS-CoV-2 (COVID-19) virus and survived. Estimates vary but suggest that up to 50% may experience long-term sequelae, termed 'Long-COVID'. While Long-COVID is a new condition, the phenomenon of disabling long-term effects following an illness requiring ongoing surveillance and management is not. In this commentary, we discuss how Long-COVID parallels the experiences of long-term cancer survivors, highlight shared challenges and offer opportunities to improve research and clinical care for both growing populations of patients as well as other long-term chronic, disabling conditions.
Subject(s)
COVID-19 , Cancer Survivors , Neoplasms , United States , Humans , SARS-CoV-2 , Neoplasms/therapy , Neoplasms/epidemiology , EuropeABSTRACT
INTRODUCTION: Oncology guidelines recommend participation in cancer rehabilitation or exercise services (CR/ES) to optimize survivorship. Yet, connecting the right survivor, with the right CR/ES, at the right time remains a challenge. The Exercise in Cancer Evaluation and Decision Support (EXCEEDS) algorithm was developed to enhance CR/ES clinical decision-making and facilitate access to CR/ES. We used Delphi methodology to evaluate usability, acceptability, and determine pragmatic implementation priorities. METHODS: Participants completed three online questionnaires including (1) simulated case vignettes, (2) 4-item acceptability questionnaire (0-5 pts), and (3) series of items to rank algorithm implementation priorities (potential users, platforms, strategies). To evaluate usability, we used Chi-squared test to compare frequency of accurate pre-exercise medical clearance and CR/ES triage recommendations for case vignettes when using EXCEEDS vs. without. We calculated mean acceptability and inter-rater agreement overall and in 4 domains. We used the Eisenhower Prioritization Method to evaluate implementation priorities. RESULTS: Participants (N = 133) mostly represented the fields of rehabilitation (69%), oncology (25%), or exercise science (17%). When using EXCEEDS (vs. without), their recommendations were more likely to be guideline concordant for medical clearance (83.4% vs. 66.5%, X2 = 26.61, p < .0001) and CR/ES triage (60.9% vs. 51.1%, X2 = 73.79, p < .0001). Mean acceptability was M = 3.90 ± 0.47; inter-rater agreement was high for 3 of 4 domains. Implementation priorities include 1 potential user group, 2 platform types, and 9 implementation strategies. CONCLUSION: This study demonstrates the EXCEEDS algorithm can be a pragmatic and acceptable clinical decision support tool for CR/ES recommendations. Future research is needed to evaluate algorithm usability and acceptability in real-world clinical pathways.
Subject(s)
Exercise Therapy , Neoplasms , Algorithms , Delphi Technique , Humans , Neoplasms/therapy , Surveys and QuestionnairesABSTRACT
BACKGROUND: Women receiving chemotherapy for gynecologic cancer (GC) experience severe symptoms with associated functional changes. Understanding day-to-day symptom and function variation within and across chemotherapy treatment cycles could inform improved symptom management, but such studies are rare and may be infeasible in clinical care. OBJECTIVE: The aim of this study was to evaluate feasibility and acceptability of daily symptom monitoring combined with objective and self-reported functional assessments every 21 days during active chemotherapy for GC. METHODS: Thirty women enrolled in a prospective observational study during first-line chemotherapy completed a daily symptom and falls diary during their entire chemotherapy treatment period. Patient-reported outcomes and objective symptom and function testing were assessed before each chemotherapy appointment. Study outcomes included accrual and attrition rates, completion of study assessments, and qualitative perceptions of study participation. RESULTS: Participants were 92% White, 60% had high school or higher education, 68% were married/partnered, and 62% had stage III or IV cancer at diagnosis. The study had an 83% accrual rate, 6.6% early withdrawal rate, and 17% total attrition rate. Missing assessments for prechemotherapy patient-reported outcomes and objective assessments ranged from 27% to 35% and 35% to 47% respectively, with a general decrease across cycles. Daily diary completion rate was 83% overall. Participants rated study participation positively. CONCLUSIONS: Intensive daily symptom and function monitoring was feasible and acceptable to GC patients and may provide a sense of symptom controllability. IMPLICATIONS FOR PRACTICE: Daily symptom and function monitoring in research studies may provide patients with information to support symptom discussions with the clinical team. Future work should develop proactive symptom management interventions using personalized symptom trajectories.
Subject(s)
Genital Neoplasms, Female , Female , Genital Neoplasms, Female/drug therapy , Humans , Palliative Care , Patient Reported Outcome Measures , Self ReportSubject(s)
Cancer Survivors , Neoplasms , Humans , Neoplasms/complications , Neoplasms/therapy , SurvivorshipABSTRACT
BACKGROUND: Online health communities (OHCs) can be a source for clinicians to learn the needs of cancer patients and caregivers. Ovarian cancer (OvCa) patients and caregivers deal with a wide range of unmet needs, many of which are expressed in OHCs. An automated need classification model could help clinicians more easily understand and prioritize information available in the OHCs. OBJECTIVE: The aim of this study was to use initial OHC postings to develop an automated model for the classification of OvCa patient and caregiver needs. METHODS: We collected data from the OvCa OHC and analyzed the initial postings of patients and caregivers (n = 853). Two annotators coded each posting with 12 types of needs. Then, we applied the machine learning approach with bag-of-words features to build a model to classify needs. F1 score, an indicator of model accuracy, was used to evaluate the model. RESULTS: The most reported needs were information, social, psychological/emotional, and physical. Thirty-nine percent of postings described information and social needs in the same posting. Our model reported a high level of accuracy for classifying those top needs. Psychological terms were important for classifying psychological/emotional and social needs. Medical terms were important for physical and information needs. CONCLUSIONS: We demonstrate the potential of using OHCs to supplement traditional needs assessment. Further research would incorporate additional information (eg, trajectory, stage) for more sophisticated models. IMPLICATIONS FOR PRACTICE: This study shows the potential of automated classification to leverage OHCs for needs assessment. Our approach can be applied to different types of cancer and enhanced by using domain-specific information.
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Ovarian Neoplasms , Social Media , Caregivers/psychology , Female , Humans , Language , Needs Assessment , Social SupportABSTRACT
PURPOSE: The Oncology Nursing Society (ONS) formed a team to develop a necessary expansion of the 2019-2022 ONS Research Agenda, with a focus on racism and cancer care disparities. METHODS: A multimethod consensus-building approach was used to develop and refine the research priorities. A panel of oncology nurse scientists and equity scholars with expertise in health disparities conducted a rapid review of the literature, consulted with experts and oncology nurses, and reviewed priorities from funding agencies. RESULTS: Critical gaps in the literature were identified and used to develop priority areas for oncology nursing research, practice, and workforce development. SYNTHESIS: This is the first article in a two-part series that discusses structural racism and health inequities within oncology nursing. In this article, three priority areas for oncology nursing research are presented; in the second article, strategies to improve cancer disparities and equity and diversity in the oncology workforce are described. IMPLICATIONS FOR RESEARCH: Research priorities are presented to inform future research that will provide methods and tools to increase health equity and reduce structural racism in oncology nursing practice, research, education, policy, and advocacy.
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Nursing Research , Racism , Humans , Medical Oncology , Oncology Nursing , Societies, NursingABSTRACT
PURPOSE: The Oncology Nursing Society (ONS) tasked a rapid response research team (RRRT) to develop priorities to increase diversity, equity, and inclusivity in oncology clinical care and workforce development. METHODS: An RRRT of experts in health disparities conducted a rapid review of the literature, consulted with oncology nurse leaders and disparities researchers, and reviewed priorities from funding agencies. RESULTS: Significant gaps in the current oncology disparities literature were identified and used to inform priority areas for future research practice and workforce development in oncology nursing. SYNTHESIS: This is the second article in a two-part series that presents findings on structural racism and health inequities in oncology nursing. In the first article, three priority areas for oncology nursing research were presented. In this article, strategies to improve diversity, equity, and inclusivity in clinical practice and the oncology workforce are described. IMPLICATIONS FOR RESEARCH: Recommendations are presented to inform research, clinical, administrative, and academic oncology nursing settings on increasing diversity, equity, and inclusivity and deconstructing structural racism.
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Nursing Research , Oncology Nursing , Health Services Accessibility , Humans , Societies, Nursing , WorkforceABSTRACT
PURPOSE: Participation in exercise or rehabilitation services is recommended to optimize health, functioning, and well-being across the cancer continuum of care. However, limited knowledge of individual needs and complex decision-making are barriers to connect the right survivor to the right exercise/rehabilitation service at the right time. In this article, we define the levels of exercise/rehabilitation services, provide a conceptual model to improve understanding of individual needs, and describe the development of the Exercise in Cancer Evaluation and Decision Support (EXCEEDS) algorithm. METHODS: From literature review, we synthesized defining characteristics of exercise/rehabilitation services and individual characteristics associated with safety and efficacy for each service. We developed a visual model to conceptualize the need for each level of specialized care, then organized individual characteristics into a risk-stratified algorithm. Iterative review with a multidisciplinary expert panel was conducted until consensus was reached on algorithm content and format. RESULTS: We identified eight defining features of the four levels of exercise/rehabilitation services and provide a conceptual model of to guide individualized navigation for each service across the continuum of care. The EXCEEDS algorithm includes a risk-stratified series of eleven dichotomous questions, organized in two sections and ten domains. CONCLUSIONS: The EXCEEDS algorithm is an evidence-based decision support tool that provides a common language to describe exercise/rehabilitation services, a practical model to understand individualized needs, and step-by-step decision support guidance. The EXCEEDS algorithm is designed to be used at point of care or point of need by multidisciplinary users, including survivors. Thus, implementation may improve care coordination for cancer exercise/rehabilitation services.
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Neoplasms , Algorithms , Exercise Therapy , Humans , Neoplasms/therapy , SurvivorsABSTRACT
From a legal perspective, before a physician engages in a serious medical intervention they must obtain informed consent. In this paper, we argue that there are serious deficits in our processes of obtaining informed consent; it is often seen as just a bureaucratic hurdle, and people agree to interventions without being in an appropriate epistemic state. We explore some possible reasons for this, including ignorance, trust in physicians' authority, and the minimal time physicians spend with patients. We trace many of these issues to one central cause, which is that in the United States obtaining informed consent is the purview of physicians. We argue that a simple shift in how we obtain informed consent can help to ameliorate these issues. Specifically, we argue that obtaining informed consent should be the responsibility of nurses rather than physicians. While there are several reasons for this, the central ideas are that (1) since nurses are the ones who know the patient, they will be in better position to tell when patients are genuinely informed, and (2) patients will be more comfortable asking questions and admitting ignorance to nurses rather than physicians. While we focus on US law, our conclusions are more broadly applicable.
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Nurses , Physicians , Humans , Informed Consent , Physician-Patient Relations , United StatesABSTRACT
PURPOSE: Caregivers of people with cancer represent a large, overburdened, and under-recognized part of the cancer care workforce. Research efforts to address the unmet needs of these caregivers are expanding with studies focused on caregivers' skill sets, physical and psychological health, and integration into healthcare delivery. As this field of research continues to expand, integrating caregivers' input is vital to studies to ensure that research aligns with their experiences. METHODS: This is a focus group study of 15 cancer caregivers conducted during a cancer caregiving workshop at the University of Pittsburgh in February 2020. During the workshop, caregivers reviewed, critiqued, and proposed priorities to support caregivers of adults with cancer. We used a multistage consensus building approach to identify priority areas of research and clinical practice to address caregivers' experiences and needs. We used descriptive content analysis to summarize caregivers' priorities. RESULTS: Caregiver-identified priorities included (1) training and information about cancer and treatment, (2) caregiver integration into the patient's healthcare delivery, (3) assistance with navigating the healthcare system, (4) focus on caregiver health and well-being, and (5) policy reform to address caregiver needs. We identified ways in which these priorities can inform cancer caregiving research and practice. CONCLUSION: These recommendations should be considered by researchers, clinicians, cancer center leadership, and policymakers interested in creating caregiver-focused research protocols, interventions, and support systems.
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Caregivers/psychology , Delivery of Health Care/methods , Neoplasms/therapy , Stakeholder Participation/psychology , Aged , Female , Humans , Male , Neoplasms/psychologyABSTRACT
ABSTRACT: Managing pain can be challenging, especially in patients with serious illnesses and a history of substance use disorders. This article discusses the challenges of addressing pain in these patients and offers perspectives regarding their clinical management.