Participants' perceptions support the coexistence of benefits and burdens of cancer clinical trial participation.

BACKGROUND: To advance oncology treatment for adults, comprehensive understanding of how and why people decide to enroll in, remain in, and withdraw from cancer clinical trials is needed. While quantitative findings provide insights into these benefits and burdens, they provide limited understanding of how adults with cancer appraise their situation and approach decisions to undertake a clinical trial. The goal of this mixed methods analysis was to conceptualize participants' assessment of benefits and burdens related to cancer clinical trial participation. MATERIALS AND METHODS: This sub-group analysis of 21 participants was part of a larger sequential, explanatory mixed methods study. We used Creamer's integrated approach to linking quantitative and qualitative data to assess convergence, with qualitative data explaining quantitative results. Participants were grouped into four categories based on quantitative benefit/burden scores and thematic analysis of their qualitative data was used to describe these categories. RESULTS: Across groups participants varied in descriptions of benefits and burdens of cancer clinical trial participation and reasons for participating. Those reporting high benefit/low burden described "seizing the opportunity to participate;" those reporting low benefit/low burden described "taking responsibility" through trial participation; those reporting low benefit/high burden described how they were "willing to endure," and those with high benefit/high burden emphasized "deciding to act." CONCLUSIONS: Participants' qualitative descriptions of benefits and burdens were more nuanced and dynamic than reflected in their quantitative ratings. Thus, current measures may be missing important concepts, such as logistic challenges of trial participation. Our results have implications for consenting procedures and decisional support guidance offered to patients and their caregivers.

Five Dimensions of Needs for Help: The Efficacy of a Technology-Based Intervention Among Asian American Breast Cancer Survivors.

Cancer survivors including Asian American breast cancer survivors have reported their high needs for help during their survivorship process. With the COVID-19 pandemic, the necessity of technology-based programs to address their needs for help without face-to-face interactions has been highlighted. The purpose of this randomized intervention study was to determine the efficacy of a technology-based program in reducing various types of needs for help among this specific population. This was a randomized clinical trial with repeated measures. A total of 199 participants were included in the data analysis. The recruitment settings included both online and offline communities/groups for Asian Americans. The needs for help were assessed using the Support Care Needs Survey-34 Short Form (SCNS) subscales measuring psychological, information, physical, support, and communication needs. Data analysis was conducted through an intent-to-treat approach. In the mixed effect models, psychological needs, information needs, physical needs, and communication needs decreased over time (P < .001). However, there were no significant group * time effects. Social support significantly mediated the effects of a technology-based intervention on psychological, information, and support needs at the pre-test and the post-1 month. This study supported significant decreases in the needs for help of Asian American breast cancer survivors by a technology-based intervention. Further studies are needed with other racial/ethnic groups of cancer survivors to confirm the efficacy of a technology-based intervention in reducing cancer survivors' needs for help during their survivorship process.

Nurses' moral distress and leadership communication in hospitals serving Black patients during COVID-19.

BACKGROUND: Poorer leadership communication during COVID-19 may have contributed to the moral distress of nurses in hospitals where Black patients predominantly access their care (BSH). PURPOSE: To compare nurse moral distress and leadership communication during the COVID-19 pandemic in hospitals that serve disproportionately many or few patients of Black race. METHODS: In a national hospital sample (n = 90), nurse survey data were collected (March 2021). Nurse moral distress was analyzed in linear regression models. The key covariates were BSH category (Medicare Black patient percentage) and leadership communication. DISCUSSION: Nurses in high-BSH had significantly greater moral distress and more difficulty accessing personal protective equipment than nurses in low-BSH. The percentage of nurses in high-BSHs with high moral distress was double that of nurses in low-BSHs. Poorer leadership communication in BSHs accounted for the nurses' greater moral distress. CONCLUSION: Policies should improve leadership communication, mitigate distress, and support nurses in under-resourced settings.

Development of the perceived miscommunication measure in the pediatric intensive care unit.

PURPOSE: Miscommunication between parents and healthcare providers in the Pediatric Intensive Care Unit (PICU) can affect family-provider relationships and outcomes. This paper reports on the development and psychometric testing of a measure for parent perceived miscommunication, defined as the failure to communicate clearly as perceived by relevant stakeholders in the PICU. DESIGN AND METHODS: Miscommunication items were identified through a review of the literature with interdisciplinary experts. In a cross-sectional quantitative survey, the scale was tested with 200 parents of children discharged from a PICU at a large Northeastern Level 1 Pediatric hospital. The psychometric properties of a 6-item miscommunication measure were assessed using exploratory factor analysis and internal consistency reliability. RESULTS: Exploratory factor analysis yielded one factor explaining 66.09% of the variance. Internal consistency reliability in the PICU sample was α = 0.89. As hypothesized, there was a significant correlation between parental stress, trust, and perceived miscommunication in the PICU (p < .001). Confirmatory factor analysis supported good fit indices in testing the measurement model (χ2/df = 2.57, Goodness of Fit Index (GFI) = 0.979, Confirmatory Fit Index (CFI) =0.993 and Standardized Mean Residual (SMR) = 0.0136). CONCLUSIONS: This new six-item miscommunication measure shows promising psychometric properties including content and construct validity, which can be further tested and refined in future studies of miscommunication and outcomes in PICU. PRACTICE IMPLICATIONS: Awareness of perceived miscommunication in the PICU can benefit stakeholders within the clinical environment by recognizing the importance of clear and effective communication and how language affects the parent-child-provider relationship.

Understanding the mediated relationship between moral distress, depression, and suicide risk in undergraduate nursing students.

BACKGROUND: Nursing students are at higher risk for depression, suicide, and other mental health concerns as compared to the general college student population. Moral distress and other ethical issues may be a significant source of psychological harm within nursing student experiences and warrants further attention. PURPOSE: The purpose of this study was to understand the mediating effect of depression on the relationship between moral distress and suicide risk among undergraduate nursing students. METHODS: This cross-sectional analysis was derived from a larger sequential mixed methods study. The first phase was an online survey completed by a national sample of N = 679 nursing students in the United States. FINDINGS: The relationship between moral distress and suicide risk was fully mediated by depression and statistically significant at the alpha = 0.05 level. CONCLUSION: All three psychological variables (depression, moral distress, suicide risk) impact nursing students and require innovative solutions within nursing and educational programs.

Ethical considerations in evaluating discharge readiness from the intensive care unit.

Evaluating readiness for discharge from the intensive care unit (ICU) is a critical aspect of patient care. Whereas evidence-based criteria for ICU admission have been established, practical criteria for discharge from the ICU are lacking. Often discharge guidelines simply state that a patient no longer meets ICU admission criteria. Such discharge criteria can be interpreted differently by different healthcare providers, leaving a clinical void where misunderstandings of patients' readiness can conflict with perceptions of what readiness means for patients, families, and healthcare providers. In considering ICU discharge readiness, the use and application of ethical principles may be helpful in mitigating such conflicts and achieving desired patient outcomes. Ethical principles propose different ways of understanding what readiness might mean and how clinicians might weigh these principles in their decision-making process. This article examines the concept of discharge readiness through the lens of the most widely cited ethical principles (autonomy [respect for persons], nonmaleficence/beneficence, and justice) and provides a discussion of their application in the critical care environment. Ongoing bioethics discourse and empirical research are needed to identify factors that help determine discharge readiness within critical care environments that will ultimately promote safe and effective ICU discharges for patients and their families.

The value of nurse bioethicists.

BACKGROUND: The field of nursing has long been concerned with ethical issues. The history of the nursing profession has a rich legacy of attention to social justice and to societal questions regarding issues of fairness, access, equity, and equality. Some nurses have found that their clinical experiences spur an interest in ethical patient care, and many are now nurse bioethicists, having pursued additional training in bioethics and related fields (e.g., psychology, sociology). PURPOSE: The authors describe how the clinical and research experiences of nurses give them a unique voice in the field of bioethics. RESULTS: Authors present reasons for the relative invisibility of nurse bioethicists, compared with physician, theologian, or philosopher bioethicists, as well as current efforts to increase the visibility of nurse bioethicists. They also describe four specific areas where nurse bioethicists have made and continue to make important contributions: as ethics consultants to colleagues in hospitals and other settings; as bioethics researchers or as advisers to researchers conducting trials with human subjects; as educators of trainees, patients and families, healthcare providers, and the public; and in helping to draft humane and ethical policies for the care of vulnerable patients and underserved populations. CONCLUSION: Nurse bioethicists are central to the future goals of healthcare bringing a unique perspective to the day-to-day ethical challenges of both clinical care and research, as well as to the education of health professionals and the public.

Caregiver Perspectives on the Benefits, Burdens, and Moral Distress of Participation in Cancer Clinical Trials.

Caregivers often face critical decisions, burdens, and perceived benefits related to a loved one participating in cancer clinical trial (CCTs). The purpose of this analysis was to better understand caregivers' perceptions on the benefits and burdens of participation in cancer clinical trials. Using a qualitative descriptive design, interviews with 20 caregivers of patient-participants from a larger parent study were conducted. Three major themes emerged. The benefits of research participation focused on enhancing the potential for saving a loved one's life, improving quality of life, and holding altruistic intentions. The burden of research participation emphasized a loved one's suffering as well as physical, emotional, logistical, and financial burden to caregivers. Caregiver moral distress highlighted distressing ethical encounters, such as making decisions on research participation and navigating suboptimal care. Understanding caregiver perceptions is an important step in designing future CCTs that minimize burdens and maximize patient and caregiver health and family-centered care.

Qualitative inquiry into adolescents' experience of ethical challenges during enrollment and adherence to antiretroviral therapy (ART) in Temeke Regional Referral Hospital, Tanzania.

BACKGROUND: Adolescents living with human immunodeficiency virus (HIV) experience challenges, including lack of involvement in their care as well nondisclosure of HIV status, which leads to poor adherence to antiretroviral therapy (ART). Parents have authority over their children, but during adolescence there is an increasing desire for independence. The aim of the study was to explore adolescents' experience of challenges identified by adolescents ages 10-19 years attending HIV care and treatment at Temeke Regional Referral Hospital in Tanzania. METHODS: An exploratory descriptive qualitative design was employed in the HIV Care and Treatment Centre (CTC) in the Out-Patient Department at the Temeke Regional Referral Hospital in Tanzania with adolescents living with HIV who were 10-19 years of age. A total of 22 adolescents participated in semi-structured face-to-face interviews after parental consent and adolescent assent were obtained. Participants were interviewed about their participation in decisions to be tested for HIV and enrolled in the CTC, concerns surrounding disclosure of their HIV status to the adolescent or to others, stigma and discrimination, and the effect of these challenges on their adherence to medication. All interviews were audio-taped, transcribed verbatim in Swahili, and back-translated to English. Data analysis included both inductive and deductive thematic analysis. RESULTS: Qualitative themes identified included lack of participation in decisions about HIV testing, challenges to enrollment in care and treatment; issues around disclosure of HIV status, such as delays in disclosure to the adolescent and disclosure to other persons and benefits and harms of such disclosures; and factors supporting and interfering with adherence to ART, such as parental support, organizational (clinic) support and problems, and self-stigmatization and shame. CONCLUSION: Lack of adolescents' involvement in their care decision making and delayed disclosure of HIV status to the adolescent were identified concerns, leading to poor adherence to ART among adolescents. Disclosure to others, especially teachers, helped adolescents at school to take their medication properly. Disclosure to others led to stigma and discrimination for some adolescents. More research is needed to better understand the role of disclosure and its benefits and challenges for HIV-positive adolescents in Tanzania.

The Effect of Digital Literacy on Participation in Social Media Clinical Trials in Cancer: Tailoring an Informed Consent Process.

Introduction: This study asked: (1) How does digital literacy influence one's decision to consent to a social media intervention study? (2) What is a brief way to assess individual digital literacy before an individual's decision to participate in a trial? and (3) How can a consent process be tailored around an individual's digital literacy level? Methods: We used an assessment tool to investigate digital literacy of those who chose to consent to a clinical trial and those who did not consent to the clinical trial but agreed to participate in a digital literacy study. Results A total of 161 hospice caregivers completed the digital literacy assessment. Older individuals and those who rated themselves as more proficient in the use of technology and social media were more likely to consent to the social media clinical trial. Conclusions: We found that asking participants to rate their technology skills and social media skills allows researchers to tailor a consent process. For those who are comfortable with technology and social media the traditional process is appropriate. For individuals that rate themselves with weaker technology and social media skills it is important that the consent process includes assurance they will receive adequate support in the use of the technology and the media. The next step is to test the assessment and tailoring of consent processes for a social media clinical trial. Clinical Trial # NCT02929108.

International consensus-based policy recommendations to advance universal palliative care access from the American Academy of Nursing Expert Panels.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. On behalf of the Academy, these evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. Through improved palliative nursing education, nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative care nurses worldwide, nurses can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations. Part II herein provides a summary of international responses and policy options that have sought to enhance universal palliative care and palliative nursing access to date. Additionally, we provide ten policy, education, research, and clinical practice recommendations based on the rationale and background information found in Part I. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter.

Clinician distress in seriously ill patient care: A dimensional analysis.

BACKGROUND: Caring for patients with serious illness may severely strain clinicians causing distress and probable poor patient outcomes. Unfortunately, clinician distress and its impact historically has received little attention. RESEARCH PURPOSE: The purpose of this article was to investigate the nature of clinician distress. RESEARCH DESIGN: Qualitative inductive dimensional analysis. PARTICIPANTS AND RESEARCH CONTEXT: After review of 577 articles from health sciences databases, a total of 33 articles were eligible for analysis. ETHICAL CONSIDERATIONS: This study did not require ethical review and the authors adhered to appropriate academic standards in their analysis. FINDINGS: A narrative of clinician distress in the hospital clinician in the United States emerged from the analysis. This included clinicians' perceptions and sense of should or the feeling that something is awry in the clinical situation. The explanatory matrix consequence of clinician distress occurred under conditions including: the recognition of conflict, the recognition of emotion, or the recognition of a mismatch; followed by a process of an inability to feel and act according to one's values due to a precipitating event. DISCUSSION: This study adds three unique contributions to the concept of clinician distress by (1) including the emotional aspects of caring for seriously ill patients, (2) providing a new framework for understanding clinician distress within the clinician's own perceptions, and (3) looking at action outside of a purely moral lens by dimensionalizing data, thereby pulling apart what has been socially constructed. CONCLUSION: For clinicians, learning to recognize one's perceptions and emotional reactions is the first step in mitigating distress. There is a critical need to understand the full scope of clinician distress and its impact on the quality of patient-centered care in serious illness.

Care Quality, Patient Safety, and Nurse Outcomes at Hospitals Serving Economically Disadvantaged Patients: A Case for Investment in Nursing.

We sought to evaluate if better work environments or staffing were associated with improvements in care quality, patient safety, and nurse outcomes across hospitals caring for different proportions of patients who are economically disadvantaged. Few actionable approaches for hospitals with quality and resource deficits exist. One solution may be to invest in the nurse work environment and staffing. This cross-sectional study utilized secondary data from 23,629 registered nurses in 503 hospitals from a four-state survey collected in 2005-2008. Each 10% increase in the proportion of patients who are economically disadvantaged was associated with 27% and 22% decreased odds of rating unit-level care quality as excellent and giving an "A" safety grade, respectively. Each 10% increase was also associated with 9%, 25%, and 11% increased odds of job dissatisfaction, intent to leave, and burnout, respectively. The work environment had the largest association with each outcome. Accounting for the nurse work environment lessened or eliminated the negative outcomes experienced at hospitals serving high proportions of patients who are economically disadvantaged. Leaders at hospitals serving high proportions of patients who are economically disadvantaged, as well as state and federal policymakers, should work to improve quality, safety, and nurse outcomes by strengthening nurse work environments. Improving work environments highlights the role of nursing in the health care system, and policies focused on work environments are needed to improve the experiences of patients and nurses, especially at hospitals that care for many patients who are economically disadvantaged.

American Academy of Nursing Expert Panel consensus statement on nursing's roles in ensuring universal palliative care access.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. Part I of this consensus paper herein provides the rationale and background to support the policy, education, research, and clinical practice recommendations put forward in Part II. On behalf of the Academy, the evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter. The authors recommend greater investments in palliative nursing education and nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative nurses worldwide. By enacting these recommendations, nurses working in all settings can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations.

Parental Decision-Making in the Pediatric Intensive Care Unit: An Integrative Review.

Parents are commonly responsible for making health care decisions for their seriously ill children in the pediatric intensive care unit (PICU); however, the factors influencing their decisions may vary. This integrative review examined the empirical literature between 2013 and 2018 to understand factors pertaining to parents' decision-making about serious illness care of their children in the PICU. Seventeen studies met the inclusion criteria with three key findings. First, parent-clinician communication in the PICU is critical; second, most parents want to be the final decision-maker for their critically ill child; and third, parents' emotions, support systems, and the child's clinical status impact decision-making. Parental perspectives are important to consider when discussing serious illness care decisions for critically ill children. Further inquiry is needed into how the parent-clinician encounter impacts the decision-making process and subsequent outcomes in this population.

Maternal Age Patterns of Preterm Birth: Exploring the Moderating Roles of Chronic Stress and Race/Ethnicity.

BACKGROUND: Despite the suggested contribution of cumulative chronic stress to the racial/ethnic disparities in preterm birth (PTB), it is unclear how chronic stress, maternal age, and race/ethnicity are linked underlying PTB. PURPOSE: We investigated the moderating effect of chronic stress on the maternal age-PTB association among non-Hispanic (N-H) White, N-H Black, Hispanic, and Asian women. METHODS: We analyzed the Washington State's Pregnancy Risk Assessment Monitoring System data linked with birth certificates. The sample included women aged 18 years or older who birthed the first, singleton baby without birth defects. Chronic stress was measured by race/ethnicity-specific chronic stress indices. A maternal age-chronic stress interaction was modeled to predict PTB by logistic regression stratified by race/ethnicity. In subanalysis, the moderating role of racism was investigated in the maternal age-chronic stress interaction among three minority groups combined. RESULTS: Women's maternal age trajectory of PTB varied by their race/ethnicity and chronic stress level. N-H White and N-H Black women showed a steeper maternal age-related increase in PTB (weathering) under higher chronic stress, indicating a chronic stress' cumulative effect with maternal age. Besides, the extent of weathering was amplified by racism on top of chronic stress, particularly among N-H Black women. CONCLUSIONS: These results show that both chronic stress and racism may develop accelerated PTB risk among minority women. Future research should use more objective and accurate chronic stress measures to ascertain the complex relationships among chronic stress, racial discrimination, and maternal age underlying the racial/ethnic differentials in PTB.

Patient Trade-Offs Related to Analgesic Use for Cancer Pain: A MaxDiff Analysis Study.

PURPOSE: Many patients with cancer pain deviate from prescribed analgesic regimens. Our aim was to elicit the trade-offs patients make based on their beliefs about analgesic use and rank utilities (importance scores) using maximum difference (MaxDiff) scaling. We also investigated if there were unique clusters of patients based on their analgesic beliefs. METHODS: This was a secondary analysis of a three-month, prospective observational study. Patients (N = 207) were self-identified African Americans and Whites, >18 years, diagnosed with multiple myeloma or solid tumor, and were prescribed at least one around-the-clock analgesic for cancer pain. MaxDiff analysis allowed us to identify patients utilities. Second, a cluster analysis assisted in ranking how analgesic beliefs differed by groups. Third, clusters were described by comparing key sociodemographic and clinical variables. RESULTS: Participants' beliefs were a significant factor in choices related to analgesic use (chi-square = 498.145, p < .0001). The belief, 'Pain meds keep you from knowing what is going on in your body', had the highest patient endorsement. Two distinct clusters of patients based on analgesic beliefs were identified; 'knowing body' was ranked as top priority for both clusters. The belief that cancer patients become addicted to analgesics was moderately important for both clusters. Severity of side effects was the only key variable significantly different between clusters (p = .043). CONCLUSIONS: Our findings support tailored pain management interventions that attend to individual beliefs about cancer pain and analgesic use. Future research should explore the relationship between analgesic utilities, actual analgesic taking behaviors, and how they impact patients' cancer pain outcomes.

Family Management in Childhood Attention Deficit Hyperactivity Disorder: A Qualitative Inquiry.

PURPOSE: The purpose of this study was to better understand how caregivers and families manage childhood Attention Deficit Hyperactivity Disorder (ADHD) in their everyday lives and explore family management factors most relevant to child outcomes, including the child's daily life, condition management effort, condition management ability, and view of condition impact. DESIGN AND METHODS: Cross-sectional data from caregivers (N = 50) of children with ADHD (ages 5-12 years) within a large northeastern city were collected, analyzed, and interpreted using directed content analysis and qualitative methods. This inquiry was part of a larger mixed method study which examined the impact of family management on childhood ADHD and how family management factors were related to children's level of impairment across a spectrum of child functioning. RESULTS: Thematic summaries based on qualitative descriptive methods highlighted four aspects of family management including: 1) how caregivers contextualized their child's condition in everyday family life, 2) the significant effort required by caregivers to manage their child's ADHD, 3) how caregivers perceived their ability to manage their child's condition, and 4) the impact of ADHD on their child and family's future. CONCLUSIONS: Family management is an important concept within pediatric literature and may be extended to further research and practice changes for children with ADHD and their caregivers. PRACTICE IMPLICATIONS: Pediatric nurses are at the forefront of working with children and families. Understanding caregiver perspectives in regard to family management is important for strengthening collaborative partnerships with families and improving the care of children with ADHD.

Nurses confronting the coronavirus: Challenges met and lessons learned to date.

Registered nurses are an essential workforce group across the globe. They use their expertise and skill sets every day in clinical practice to protect, promote, and advocate on behalf of patients and families under their care. In this article we discuss the physical, emotional, and moral stresses that nurses are experiencing in their day-to-day practice settings created by the novel coronavirus. We consider the demands placed on nurses by unexpected patient surges within hospital environments and inadequate personal protective equipment and other critical resources, challenging nurses' ability to meet their professional and ethical obligations. We also share our thoughts on supporting nurses and others now, and ideas for needed healing for both individuals and organizations as we move forward. Finally, we argue for the need for substantive reform of institutional processes and systems that can deliver quality care in the future when faced with another devastating humanitarian and public health crises.

The ethics of sensor technology use in clinical research.

Sensor-based technologies are used today in clinical practice, research, and for monitoring people's health in homes across the United States. Although the increasing growth and complexity of such technologies promises both direct and indirect benefits, significant ethical concerns are raised. We discuss several of these concerns, particularly those that arise in clinical research and outline ethical considerations that pertain to the concept of informed consent, participants' understanding of risks and benefits and the need for tailored and accessible information that will enable participants to fully understand research implications. Balancing the benefits with the potential risks of advanced information technology will require ethically astute researchers who can address the challenges that might arise while advancing knowledge with innovation that can improve the lives of patients and families.