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1.
J Psychosoc Oncol ; : 1-17, 2024 Jun 22.
Article in English | MEDLINE | ID: mdl-38907623

ABSTRACT

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.

2.
J Cancer Educ ; 39(3): 335-348, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38594385

ABSTRACT

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.


Subject(s)
Asian , Breast Neoplasms , COVID-19 , Cancer Survivors , Social Support , Humans , Female , Breast Neoplasms/ethnology , Breast Neoplasms/psychology , Breast Neoplasms/therapy , Cancer Survivors/psychology , Asian/psychology , Middle Aged , COVID-19/prevention & control , COVID-19/epidemiology , Needs Assessment , Adult , SARS-CoV-2 , Health Services Needs and Demand , Aged , Surveys and Questionnaires
3.
J Pediatr Nurs ; 71: e135-e141, 2023.
Article in English | MEDLINE | ID: mdl-37270386

ABSTRACT

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.


Subject(s)
Health Personnel , Intensive Care Units, Pediatric , Humans , Child , Reproducibility of Results , Cross-Sectional Studies , Factor Analysis, Statistical , Psychometrics , Communication , Surveys and Questionnaires
4.
Nurs Outlook ; 71(3): 101966, 2023.
Article in English | MEDLINE | ID: mdl-37054498

ABSTRACT

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.


Subject(s)
Education, Nursing, Baccalaureate , Students, Nursing , Suicide , Humans , Students, Nursing/psychology , Depression/epidemiology , Depression/psychology , Education, Nursing, Baccalaureate/methods , Cross-Sectional Studies , Morals
5.
Nurs Ethics ; : 9697330231212338, 2023 Nov 11.
Article in English | MEDLINE | ID: mdl-37950598

ABSTRACT

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.

6.
Nurs Ethics ; 30(5): 701-709, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37946390

ABSTRACT

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.


Subject(s)
Bioethics , Ethicists , Humans , Bioethics/education , Patient Care , Hospitals
7.
J Fam Nurs ; 29(1): 89-98, 2023 02.
Article in English | MEDLINE | ID: mdl-35611586

ABSTRACT

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.


Subject(s)
Caregivers , Neoplasms , Humans , Caregivers/psychology , Morals , Neoplasms/therapy , Parents , Quality of Life , Clinical Trials as Topic
8.
BMC Med Ethics ; 23(1): 22, 2022 03 09.
Article in English | MEDLINE | ID: mdl-35264169

ABSTRACT

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.


Subject(s)
HIV Infections , Medication Adherence , Adolescent , Adult , Child , HIV Infections/drug therapy , Hospitals , Humans , Qualitative Research , Referral and Consultation , Social Stigma , Tanzania , Young Adult
9.
Nurs Outlook ; 70(1): 36-46, 2022.
Article in English | MEDLINE | ID: mdl-34627615

ABSTRACT

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.


Subject(s)
Consensus , Expert Testimony , Global Health , Health Services Accessibility , Hospice and Palliative Care Nursing , Palliative Care/standards , Evidence-Based Nursing/trends , Health Policy , Health Services Accessibility/standards , Health Services Accessibility/trends , Humans , Societies, Nursing , Stakeholder Participation , Universal Health Care
10.
Nurs Outlook ; 69(6): 961-968, 2021.
Article in English | MEDLINE | ID: mdl-34711419

ABSTRACT

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.


Subject(s)
Consensus , Expert Testimony , Hospice and Palliative Care Nursing , Palliative Care , Universal Health Care , Education, Nursing , Global Health , Healthcare Disparities , Humans , Nurse Administrators , Societies, Nursing
11.
J Fam Nurs ; 27(2): 154-167, 2021 05.
Article in English | MEDLINE | ID: mdl-33523765

ABSTRACT

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.


Subject(s)
Decision Making , Parents , Child , Communication , Critical Illness , Humans , Intensive Care Units, Pediatric
12.
Pain Manag Nurs ; 21(3): 245-254, 2020 06.
Article in English | MEDLINE | ID: mdl-31648906

ABSTRACT

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.


Subject(s)
Analgesics/standards , Cancer Pain/drug therapy , Adult , Analgesics/adverse effects , Analgesics/pharmacology , Analysis of Variance , Cancer Pain/psychology , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , Neoplasms/complications , Pain Management/adverse effects , Pain Management/methods , Pain Management/standards , Pain Measurement/methods , Pennsylvania , Prospective Studies
13.
J Pediatr Nurs ; 52: 82-90, 2020.
Article in English | MEDLINE | ID: mdl-32005539

ABSTRACT

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.


Subject(s)
Attention Deficit Disorder with Hyperactivity , Attention Deficit Disorder with Hyperactivity/diagnosis , Attention Deficit Disorder with Hyperactivity/therapy , Caregivers , Child , Child, Preschool , Cross-Sectional Studies , Family , Humans , Qualitative Research
14.
Nurs Outlook ; 68(6): 838-844, 2020.
Article in English | MEDLINE | ID: mdl-33097227

ABSTRACT

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.


Subject(s)
COVID-19/nursing , Nurses/psychology , Nursing Care/ethics , Nursing Care/psychology , Nursing Staff, Hospital/ethics , Nursing Staff, Hospital/psychology , Quality of Health Care/ethics , Adult , Coronavirus , Ethics, Nursing , Female , Humans , Male , Middle Aged , Occupational Stress , Pandemics , United States
15.
Nurs Outlook ; 68(6): 720-726, 2020.
Article in English | MEDLINE | ID: mdl-32622646

ABSTRACT

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.


Subject(s)
Ethics, Nursing , Inventions/ethics , Inventions/trends , Nursing Research/ethics , Nursing Research/instrumentation , Nursing Research/trends , Forecasting , Humans , United States
16.
Nurs Outlook ; 68(1): 83-93, 2020.
Article in English | MEDLINE | ID: mdl-31443946

ABSTRACT

BACKGROUND: Pain is one of the most common symptoms identified along the cancer trajectory. Among patients with moderate to severe cancer pain, nonadherence to prescribed analgesics may complicate treatment plans and exacerbate pain severity. Nonadherent behaviors are likely due to a number of individual/family, provider, and system level factors and may lead to negative pain-related outcomes. PURPOSE: The purpose of this concept analysis is to clarify the concept of analgesic nonadherence for cancer pain and qualify its utility in the context of the opioid crisis. METHOD: Walker and Avant's (2019) method for concept analysis was used. We integrated empirical evidence, relevant literature, and sociopolitical considerations related to the opioid crisis to provide critical and timely analysis. Data were collected from a search of PubMed, CINAHL, PsycINFO, and Scopus. The search yielded 418 individual records. Empirical articles using quantitative and qualitative methodologies pertaining to analgesic nonadherence for cancer pain in adult outpatient settings, written in English, with an abstract, and published between 2010 and 2018 were considered. Other relevant literature sources were used if additional criteria were met. A total of 33 records were selected for detailed review. FINDINGS: Few studies link analgesic nonadherence to patient outcomes highlighting a significant literature gap. Given the available evidence, a definition for analgesic nonadherence is proposed for future use in research, education, practice, and policy settings. DISCUSSION: The paucity of empirical data combined with the implications of the opioid crisis and conflicting pain management guidelines create uncertainty about the utility of analgesic nonadherence. The concept of analgesic nonadherence warrants further normative and empirical research to clarify the role of opioids and the meaning of nonadherence in shaping pain-related outcomes within the current sociopolitical environment.


Subject(s)
Analgesics, Opioid/therapeutic use , Analgesics/therapeutic use , Cancer Pain/drug therapy , Medication Adherence , Neoplasms/drug therapy , Opioid Epidemic , Adult , Humans , Male , Neoplasms/complications , Pain Management/standards , Self Administration
17.
Nurs Ethics ; 27(3): 821-837, 2020 May.
Article in English | MEDLINE | ID: mdl-32138577

ABSTRACT

BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. OBJECTIVE: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. DESIGN AND METHODS: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness. ETHICAL CONSIDERATIONS: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences. FINDINGS: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. DISCUSSION: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. CONCLUSION: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.


Subject(s)
Critical Illness/psychology , Parents/psychology , Stress, Psychological/etiology , Child , Child Health/standards , Critical Illness/therapy , Female , Humans , Male , Pediatrics/methods , Pediatrics/standards , Stress, Psychological/psychology
18.
Nurs Ethics ; 27(1): 206-220, 2020 Feb.
Article in English | MEDLINE | ID: mdl-31014168

ABSTRACT

BACKGROUND: Collaboration between physicians and nurses is key to improving patient care. We know very little about collaboration and interdisciplinary practice in African healthcare settings. RESEARCH QUESTION/AIM: The purpose of this study was to explore the ethical challenges of interdisciplinary collaboration in clinical practice and education in Botswana Participants and research context: This qualitative descriptive study was conducted with 39 participants (20 physicians and 19 nurses) who participated in semi-structured interviews at public hospitals purposely selected to represent the three levels of hospitals in Botswana (referral, district, and primary). ETHICAL CONSIDERATIONS: Following Institutional Review Board Approval at the University of Pennsylvania and the Ministry of Health in Botswana, participants' written informed consent was obtained. FINDINGS: Respondents' ages ranged from 23 to 60 years, and their duration of work experience ranged from 0.5 to 32 years. Major qualitative themes that emerged from the data centered on the nature of the work environment, values regarding nurse-doctor collaboration, the nature of such collaboration, resources available for supporting collaboration and the smooth flow of work, and participants' views about how their work experiences could be improved. DISCUSSION: Participants expressed concerns that their work environment compromised their ability to provide high-quality and safe care to their patients. The physician staffing structure was described as consisting of a few specialists at the top, a vacuum in the middle that should be occupied by senior doctors, and junior doctors at the bottom-and not a sufficient number of nursing staff. CONCLUSION: Collaboration between physicians and nurses is critical to optimizing patients' health outcomes. This is true not only in the United States but also in developing countries, such as Botswana, where health care professionals reported that their ethical challenges arose from resource shortages, differing professional attitudes, and a stressful work environment.


Subject(s)
Cooperative Behavior , Ethics, Clinical , Physician-Nurse Relations , Adult , Attitude of Health Personnel , Botswana , Female , Humans , Male , Middle Aged , Qualitative Research
19.
Prev Med ; 126: 105762, 2019 09.
Article in English | MEDLINE | ID: mdl-31271816

ABSTRACT

Despite the successes of financial incentives in increasing uptake of evidence-based interventions, acceptability is polarized. Given widespread interest in the use of financial incentives, we update findings from Giles and colleagues' 2015 systematic review (n = 81). The objectives of this systematic review are to identify what is known about financial incentives directed to patients for health-related behavior change, assess how acceptability varies, and address which aspects and features of financial incentives are potentially acceptable and not acceptable, and why. PRISMA guidelines were used for searching peer-reviewed journals across 10 electronic databases. We included empirical and non-empirical papers published between 1/1/14 and 6/1/18. After removal of duplicates, abstract screening, and full-text reviews, 47 papers (n = 31 empirical, n = 16 scholarly) met inclusion criteria. We assessed empirical papers for risk of bias and conducted a content analysis of extracted data to synthesize key findings. Five themes related to acceptability emerged from the data: fairness, messaging, character, liberty, and tradeoffs. The wide range of stakeholders generally preferred rewards over penalties, vouchers over cash, smaller values over large, and certain rewards over lotteries. Deposits were viewed unfavorably. Findings were mixed on acceptability of targeting specific populations. Breastfeeding, medication adherence, smoking cessation, and vaccination presented as more complicated incentive targets than physical activity, weight loss, and self-management. As researchers, clinicians, and policymakers explore the use of financial incentives for challenging health behaviors, additional research is needed to understand how acceptability influences uptake and ultimately health outcomes.


Subject(s)
Health Behavior , Health Promotion/economics , Health Promotion/methods , Motivation , Cost-Benefit Analysis , Gift Giving/ethics , Humans
20.
Nurs Ethics ; 26(4): 1050-1061, 2019 Jun.
Article in English | MEDLINE | ID: mdl-29157120

ABSTRACT

BACKGROUND: Informed consent is fundamental to the autonomous decision-making of patients, yet much is still unknown about the process in the clinical setting. In an evolving healthcare landscape, nurses must be prepared to address patient understanding and participate in the informed consent process to better fulfill their well-established role as patient advocates. RESEARCH OBJECTIVE: This study examines hospital-based nurses' experiences and understandings of the informed consent process. RESEARCH DESIGN: This qualitative descriptive study utilized a semi-structured interview approach identifying thematic concerns, experiences, and knowledge of informed consent across a selected population of clinically practicing nurses. PARTICIPANTS AND RESEARCH CONTEXT: In all, 20 baccalaureate prepared registered nurses practicing in various clinical settings (i.e. critical care, oncology, medical/surgical) at a large northeastern academic medical center in the United States completed semi-structured interviews and a demographic survey. The mean age of participants was 36.6 years old, with a mean of 12.2 years of clinical experience. ETHICAL CONSIDERATIONS: Participation in this study involved minimal risk and no invasive measures. This study received Institutional Review Board approval from the University of Pennsylvania. All participants voluntarily consented. FINDINGS: The majority of participants (N = 19) believe patient safety is directly linked to patient comprehension of the informed consent process. However, when asked if nurses have a defined role in the informed consent process, nearly half did not agree (N = 9). Through this qualitative approach, three major nursing roles emerged: the nurse as a communicator, the nurse as an advocate, and the clerical role of the nurse. DISCUSSION AND CONCLUSION: This investigation contributes to the foundation of ethical research that will better prepare nurses for patient engagement, advance current understanding of informed consent, and allow for future development of solutions. Nurses are at the forefront of patient-provider interactions and they are often presented opportunities to learn about and engage in the informed consent process.


Subject(s)
Clinical Competence/standards , Informed Consent/standards , Nurses/standards , Adult , Female , Humans , Informed Consent/ethics , Male , Middle Aged , Nurses/psychology , Patient Advocacy/ethics , Pennsylvania , Qualitative Research , United States
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