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1.
PLoS One ; 19(6): e0302363, 2024.
Article in English | MEDLINE | ID: mdl-38875238

ABSTRACT

With increasing violence, political, and economic instability in Latin America, there is a record number of migrants crossing the U.S. southern border. Latin American migrants are often exposed to traumatic events before leaving their home country and during migration. While prior studies document that sex may play a role in types of traumatic exposure, few studies compare differences in traumatic exposure by sex and place of occurrence of recently arrived immigrants. Addressing this gap, we recruited 120 adults who had recently crossed the U.S.-Mexico border. Participants completed questionnaires to characterize trauma exposures in their home country and during their migration journey. Results found that men reported higher levels of exposure to combat situations, while women were more likely to experience sexual assault. Both combat exposure and sexual traumas occurred more often in home countries than during migration. More than half of the full sample reported being threatened with a firearm. These data confirm gender differences in type of trauma and that exposures in the country of origin may provide the impetus to migrate.


Subject(s)
Emigrants and Immigrants , Humans , Male , Female , Adult , Emigrants and Immigrants/statistics & numerical data , Latin America/ethnology , Latin America/epidemiology , Surveys and Questionnaires , Sex Factors , Young Adult , Middle Aged , Sex Offenses/statistics & numerical data , Mexico/epidemiology , Mexico/ethnology , United States/epidemiology , Adolescent
2.
BMJ Open ; 14(5): e080137, 2024 May 20.
Article in English | MEDLINE | ID: mdl-38772594

ABSTRACT

OBJECTIVE: Research cannot advance without the voluntary participation of human participants. SUMMARY OF ARGUMENTS: Full participation of research participants is often restrained by the traditional research framework, which relegates them to a predefined participant role and allows them only quasi-scripted opportunities to contribute to research processes and outcomes. Terms commonly used to refer to research participants do not reflect their significant role or send a clear message about their value. The authors propose a shift from 'patient participant' to 'participant partner.' Recognition of the true partnership between the participant and the research team, from the consent process to the trial's end, will encourage and enable fuller participation. CONCLUSION: Changing the rhetoric of research in the labelling of research participants will require dialogue. 'Respect for persons' demands it, and the research process will be better for it.


Subject(s)
Biomedical Research , Research Subjects , Humans , Research Subjects/psychology , Patient Participation , Informed Consent
3.
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
4.
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.

5.
AJOB Empir Bioeth ; : 1-13, 2023 Nov 03.
Article in English | MEDLINE | ID: mdl-37921867

ABSTRACT

IMPORTANCE: Informed consent is essential to ethical, rigorous research and is important to recruitment and retention in cancer trials. OBJECTIVE: To examine cancer clinical trial (CCT) participants' perceptions of informed consent processes and variations in perceptions by cancer type. DESIGN AND SETTING AND PARTICIPANTS: Cross-sectional survey from mixed-methods study at National Cancer Institute-designated Northeast comprehensive cancer center. Open-ended and forced-choice items addressed: (1) enrollment and informed consent experiences and (2) decision-making processes, including risk-benefit assessment. Eligibility: CCT participant with gastro-intestinal or genitourinary, hematologic-lymphatic malignancies, lung cancer, and breast or gynecological cancer (N = 334). MAIN OUTCOME MEASURES: Percentages satisfied with consent process and information provided; and assessing participation's perceptions of risks/benefits. Multivariable logistic or ordinal regression examined differences by cancer type. RESULTS: Most patient-participants felt well informed by the consent process (more than 90% overall and by cancer type) and. most (87.4%) reported that the consent form provided all the information they wanted, although nearly half (44.8%) reported that they read the form somewhat carefully or less. More than half (57.9%) said that talking to research staff (i.e., the consent process) had a greater impact on participation decisions than reading the consent form (2.1%). A third (31.1%) were very sure of joining in research studies before the informed consent process (almost half of lung cancer patients did-47.1%). Most patients personally assessed the risks and benefits before consenting. However, trust in physicians played an important role in the decision to enroll in CCT. CONCLUSIONS AND RELEVANCE: Cancer patients rely less on written features of the informed consent process than on information obtained from the research staff and their own physicians. Research should focus on information and communication strategies that support informed consent from referring physicians, researchers, and others to improve patient risk-benefit assessment and decision-making.

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.
Nat Commun ; 14(1): 6475, 2023 10 14.
Article in English | MEDLINE | ID: mdl-37838727

ABSTRACT

A culturally tailored virtual program could meet the survivorship needs of Asian American women breast cancer survivors (AABC). This study aims to determine the efficacy of a culturally tailored virtual information and coaching/support program (TICAA) in improving AABC's survivorship experience. A randomized clinical trial (NCT02803593) was conducted from January 2017 to June 2020 among 199 AABC. The intervention group utilized TICAA and the American Cancer Society [ACS] website while the control group used only ACS website for 12 weeks. The outcomes were measured using the SCNS-34SF (needs; primary), the MSAS-SF (symptoms; secondary), and the FACT-B (quality of life; secondary). The data were analyzed using an intent-to-treat approach. The intervention group showed significant reductions in their needs from the baseline (T0) to post 4 weeks (T1) and to post 12 weeks (T2). Although the changes were not statistically significant, the intervention group had decreased symptoms from T0 to T2 while the control group had an increase in their symptoms. The intervention group had a significant increase in their quality of life from T0 to T2. A culturally tailored virtual program could therefore improve quality of life in AABC patients. Trial Registration: To Enhance Breast Cancer Survivorship of Asian Americans (TICAA), NCT02803593, https://clinicaltrials.gov/ct2/show/NCT02803593?titles=TICAA&draw=2&rank=1.


Subject(s)
Breast Neoplasms , Cancer Survivors , Quality of Life , Female , Humans , Asian , Breast Neoplasms/complications , Breast Neoplasms/ethnology , Breast Neoplasms/therapy , Survivors , Telemedicine , Culturally Competent Care , Mentoring , Social Support
8.
Hosp Pediatr ; 13(9): e246-e250, 2023 09 01.
Article in English | MEDLINE | ID: mdl-37641886

ABSTRACT

OBJECTIVES: In 2019, the American Academy of Pediatrics (AAP) outlined 8 operational recommendations for pediatric institutional ethics committees (IECs). The study purpose was to quantify the extent to which pediatric IECs adhere to the AAP IEC Policy Statement recommendations. METHODS: A convenience sample of ethics points of contact from Children's Hospital Association membership were invited to complete an electronic survey on their ethics programs and practices in spring 2022. Nineteen survey questions were preidentified as reflecting measures specific to best practice standards previously published by the AAP. This subset of questions was analyzed using frequencies and categorized to assess for adherence to the AAP IEC policy recommendations. RESULTS: A total of 117 out of 181 surveys were completed (65%). Stark IEC practice gaps include: lack of diversity of membership, training needs to maintain members' competencies, quality improvement within the organization, and scope of ethics service. Over one-quarter of IECs do not have a systematic way of informing hospital staff about ethics consultancy services and how to place an ethics consult. Nineteen percent of responding IEC services do not inform patients or families about the existence of ethics consult services. One-third of responding children's hospitals do not provide resources for the IECs to engage in ethics education at the facility. CONCLUSIONS: IECs in children's hospitals are not consistently abiding by operational recommendations. Next steps should include assessment of recommendation barriers and enablers with a goal of enhancing strong practices across IECs in children's hospitals.


Subject(s)
Ethics Committees , Hospitals, Pediatric , Humans , Child , Educational Status , Personnel, Hospital , Policy
9.
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
10.
Nurs Open ; 10(7): 4766-4772, 2023 07.
Article in English | MEDLINE | ID: mdl-37020325

ABSTRACT

AIM: To explore healthcare team members' perceptions of their ethical obligations toward HIV-positive adolescents and their enrolment in and adherence to antiretroviral therapy among adolescents attending a Care and Treatment Center (CTC) in Temeke Regional Referral Hospital in Tanzania. DESIGN: This is a descriptive exploratory qualitative study. METHODS: A total of 16 healthcare team members were purposively selected from the hospital CTC to participate in in-depth qualitative interviews. With the aid of NVivo software, qualitative thematic analysis was used to analyze the information. RESULTS: Five themes on ethical obligations emerged: (1) informing adolescents of their status before enrolment to the HIV CTC, (2) securing adolescents' confidential information, (3) disclosing adolescents' HIV status, (4) informing others about the adolescent's HIV status; and (5) offering reproductive health education for adolescents living with HIV. CONCLUSION: The healthcare team faces many ethical challenges in the care and support of adolescents who enroll in an HIV CTC in Tanzania. Differing ethical obligations must be balanced with the needs of adolescents and their parents in discerning what is in the best interest of the adolescent and advocating for life-saving treatment.


Subject(s)
HIV Infections , Humans , Adolescent , HIV Infections/drug therapy , Parents , Educational Status , HIV , Tanzania
11.
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
13.
Am J Hosp Palliat Care ; 40(11): 1261-1270, 2023 Nov.
Article in English | MEDLINE | ID: mdl-36604312

ABSTRACT

Background: Psilocybin-assisted therapies (PAT) are reemerging as a treatment for complex distress often prompting mystical experiences, enhanced meaning, and spiritual wellbeing. We sought to investigate how measures of spirituality are employed in experimental studies of PAT conducted with seriously ill adults. Methods: We included experimental studies of psilocybin conducted with seriously ill adults, which employed measures that contained spirituality and mysticism concepts within their domains or subdomains. Included studies were peer-reviewed and published in English language (up to December 2021). Results: Seven articles met our inclusion criteria. A total of 12 unique instruments were identified. The most frequently used instruments were the Mystical Experience Questionnaire (MEQ30), the Functional Assessment of Chronic Illness Therapy-Spirituality (FACIT-Sp-12), and the Demoralization Scale (DS-I/II) (used in four studies each), followed by the Persisting Effects Questionnaire (PEQ) (used in three studies). Overall, studies did not consistently define and contextualize spirituality domains and subdomains studied. Conclusions: Despite well-recognized significance of spirituality in PAT, there was considerable heterogeneity in number and types of spirituality measures employed across studies. There also seemed a lack of attention to defining and operationalizing spirituality and its domains and subdomains. This is notable as spirituality and overlapping concepts (eg mystical experiences) contributes substantially to this body of research and patients' therapeutic outcomes. Towards developing more rigorous science of spirituality in PAT research, there is a critical need to evaluate and refine measures of spirituality to enhance their utility and replicability, limit participant burden, and better contextualize spirituality-related findings and outcomes.


Subject(s)
Hallucinogens , Psilocybin , Adult , Humans , Psilocybin/therapeutic use , Hallucinogens/therapeutic use , Spirituality , Mysticism , Surveys and Questionnaires
14.
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
15.
AJOB Empir Bioeth ; 14(1): 1-14, 2023.
Article in English | MEDLINE | ID: mdl-35994631

ABSTRACT

BACKGROUND: The COVID-19 pandemic continues to disrupt every society as SARs-CoV-2 variants surge among the populations. Health care providers are exhausted, becoming ill themselves, and in some instances have died. Indeed, hospitals are struggling to find staff to care for critically ill patients most in need. Previous work has reported on the unending work-related conditions that hospital staff are laboring under and their subsequent mental and physical health strains. Health care providers need support, but it is not clear where that support is to come from. While much research has reported on the COVID-19-related fears of nurses and physicians, fewer studies have focused on supportive features of the hospital work environment and how it may provide relief to front-line health care providers. PURPOSE: This purpose of this study was to explore an often-overlooked resource within hospital systems across the United States-clinical ethicists-and examine their many roles during COVID-19 and the types of ethical issues they addressed with nurses, physicians, administrators, and others. METHODS: This was a primary analysis of semi-structured, qualitative interviews with 23 clinical ethicists across the United States. The interviews were conducted from November 2020-April 2021 and were audiotaped, transcribed verbatim, and de-identified; both inductive and deductive analyses were used to identify qualitative themes. RESULTS: Five major themes were identified: ethical issues that were increasingly more complex, moral distress that was "endemic," shifting ethical paradigms from the focus on the individual to the population, fostering a supportive environment, and organizational ethics: variation in the value, roles, and policy input of clinical ethicists. CONCLUSIONS: Our findings report on the integral and expanded role of clinical ethicists at an unprecedented time in our nation, and how they stepped forward to support front-line clinicians in hospitals across the country.


Subject(s)
COVID-19 , Ethicists , Humans , United States , Pandemics , SARS-CoV-2
16.
JAMA Netw Open ; 5(11): e2244412, 2022 11 01.
Article in English | MEDLINE | ID: mdl-36449287

ABSTRACT

Importance: Attrition in cancer clinical trials (CCTs) can lead to systematic bias, underpowered analyses, and a loss of scientific knowledge to improve treatments. Little attention has focused on retention, especially the role of perceived benefits and burdens, after participants have experienced the trial. Objectives: To examine the association between patients' perceived benefits and burdens of research participation and CCT retention. Design, Setting, and Participants: This survey study was conducted at a National Cancer Institute-designated comprehensive cancer center in the Northeast region of the US. The sample included adult patients with a cancer diagnosis participating in cancer therapeutic trials. Data were collected from September 2015 to June 2019. Analysis of study data was ongoing since November 2019 through October 2022. Exposures: Self-reported validated survey instrument with a list of 22 benefits and 23 burdens of research participation that can be rated by patients with a 5-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Main Outcomes and Measures: A primary outcome was actual withdrawal from the CCT, and a composite outcome was composite withdrawal that included both actual withdrawal and thoughts of withdrawing. Bivariate and multivariable logistic regressions were used. Results: Among the 334 participants in the sample, the mean (SD) age was 61.9 (11.5) years and 174 women (52.1%) were included. Top-cited benefits included both aspirational and action-oriented goals, including helping others (94.2%), contributing to society (90.3%), being treated respectfully (86.2%), and hoping for a cure (86.0%). Worry over receiving a placebo (61.3%), rearranging one's life (41.9%), and experiencing bothersome adverse effects (41.6%) were notable burdens. An increased burden score was associated with a higher probability of actual withdrawal (adjusted odds ratio [OR], 1.86; 95% CI, 1.1-3.17; P = .02) or composite withdrawal (adjusted OR, 3.44; 95% CI, 2.09-5.67; P < .001). An increased benefit score was associated with lower composite withdrawal (adjusted OR, 0.40; 95% CI, 0.24-0.66; P < .001). For participants who reported the benefits as being equal to or greater than the burdens, 13.4% withdrew. For those who perceived the benefits as being less than the burdens, 33.3% withdrew (adjusted OR, 3.38; 95% CI, 1.13-10.14; P = .03). The risk of withdrawal was even higher for the composite outcome (adjusted OR, 7.70; 95% CI, 2.76-21.48; P < .001). Conclusions and Relevance: This survey study found that patients perceived important benefits from CCT participation, and this perception was associated with trial retention, even among those who also perceived substantial burdens. A broader dialogue among stakeholders can inform an ethical and patient-centric focus on benefits throughout the course of a CCT to increase retention.


Subject(s)
Drug-Related Side Effects and Adverse Reactions , Neoplasms , United States , Adult , Humans , Female , Middle Aged , National Cancer Institute (U.S.) , Neoplasms/therapy , Antisocial Personality Disorder , Hope
17.
Eur J Oncol Nurs ; 61: 102224, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36375304

ABSTRACT

BACKGROUND: Patients with hematologic malignancies experience anxiety and depressive symptoms from diagnosis through survivorship. The aim of this systematic review is to determine if coping skill interventions can reduce anxiety and depressive symptoms for persons with hematologic cancer. METHODS: Databases including PubMed, Embase, CINAHL, APA PyschInfo, Scopus, and Cochrane were searched in June of 2021 for coping skill interventional studies with adult patients with hematologic cancer and outcomes of anxiety and depressive symptoms. Search terms, definitions, and inclusion/exclusion criteria were guided by the Transactional Model of Stress and Coping, and quality appraisal utilized the Johns Hopkins Evidence Based Practice Appraisal tool. The study was registered in PROSPERO under "CRD42021262967." RESULTS: Eleven studies met inclusion criteria with ten studies evaluating anxiety symptoms and nine studies evaluating depressive symptoms. Of ten studies with 449 participants evaluating anxiety, five studies showed significant reduction (p < 0.05), three found small to moderate effect size reductions not reaching statistical significance (p > 0.05), and only two showed no reduction in anxiety symptoms. Of nine studies with 429 participants evaluating depressive symptoms, three had significant reductions (p < 0.05), three reported small to moderate effect size reductions not reaching statistical significance (p > 0.05), and three found no effect on depressive symptoms. Coping interventions that were problem-focused as opposed to emotion-focused were most effective for both anxiety and depressive symptoms. CONCLUSION: This systematic review finds evidence that problem-focused coping interventions reduce anxiety symptoms among patients with hematologic malignancies, with mixed evidence for reduction of depressive symptoms. Nurses and other clinicians caring for patients with hematologic cancers may employ coping skill interventions as a potential way to mitigate anxiety and depressive symptoms. PROSPERO REGISTRATION ID: CRD42021262967.


Subject(s)
Depression , Hematologic Neoplasms , Adult , Humans , Depression/etiology , Depression/prevention & control , Anxiety/etiology , Anxiety/prevention & control , Anxiety Disorders , Adaptation, Psychological , Hematologic Neoplasms/complications
18.
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
19.
J Spec Pediatr Nurs ; 27(2): e12365, 2022 04.
Article in English | MEDLINE | ID: mdl-34962094

ABSTRACT

PURPOSE: Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder affecting over 9% of children in the United States. Family caregivers are often responsible for the management of their child's ADHD. Contextual influences, such as healthcare providers, systems, and resources, are factors contributing to the ease or difficulty of family management. The purpose of this article is to qualitatively describe the major contextual influences that impact family management for ethnically diverse children with ADHD. DESIGN AND METHODS: This analysis is part of a mixed methods study using a concurrent nested design (QUAL + quant) to understand the phenomenon of family management from a contextual and socioecological perspective. In this analysis, cross-sectional data from caregivers of children with ADHD (N = 50) within a large northeastern city in the United States were collected, analyzed, and interpreted in the qualitative descriptive tradition. Semistructured interviews were conducted with participants to understand the contextual influences within family management. Conventional content analysis resulted in the emergence of barrier and facilitator domains and subdomains. RESULTS: Caregivers were predominantly female (98%) and between 24 and 61 years with a mean age of 37.54 (SD = 1.18). Caregivers identified their children as Black or African American (56%), White (26%), Multi-Racial (16%), Hispanic or Latinx (8%), and Asian (2%). Contextual influences within family management emerged as barrier or facilitator domains. Barrier domains included: (1) family, (2) healthcare systems, (3) educational systems, (4) stigma, and (5) financial, insurance, and policy issues. Facilitator domains included: (1) family and community, (2) healthcare providers, and (3) educational providers. Subdomains within each domain are expanded in the article. PRACTICE IMPLICATIONS: Specialists in pediatric nursing should consider contextual influences within family management for ethnically diverse children with ADHD. As healthcare providers, it is important to recognize system-level barriers or facilitators for caregivers and their children and find creative ways to overcome obstacles and leverage strengths within families, communities, and care systems. Another important area for pediatric specialists to consider is understanding how stigma impacts children with ADHD. Policy-level engagement and advocacy should maximize the political will of nurses, families, and educators to create change within communities.


Subject(s)
Attention Deficit Disorder with Hyperactivity , Adult , Black or African American , Attention Deficit Disorder with Hyperactivity/therapy , Caregivers , Child , Cross-Sectional Studies , Educational Status , Female , Humans , United States
20.
Am J Hosp Palliat Care ; 39(6): 619-632, 2022 Jun.
Article in English | MEDLINE | ID: mdl-34318700

ABSTRACT

BACKGROUND: Palliative care consultation to discuss goals-of-care ("PCC") may mitigate end-of-life care disparities. OBJECTIVE: To compare hospitalization and cost outcomes by race and ethnicity among PCC patients; identify predictors of hospice discharge and post-discharge hospitalization utilization and costs. METHODS: This secondary analysis of a retrospective cohort study assessed hospice discharge, do-not-resuscitate status, 30-day readmissions, days hospitalized, ICU care, any hospitalization cost, and total costs for hospitalization with PCC and hospitalization(s) post-discharge among 1,306 Black/African American, Latinx, White, and Other race PCC patients at a United States academic hospital. RESULTS: In adjusted analyses, hospice enrollment was less likely with Medicaid (AOR = 0.59, P = 0.02). Thirty-day readmission was less likely among age 75+ (AOR = 0.43, P = 0.02); more likely with Medicaid (AOR = 2.02, P = 0.004), 30-day prior admission (AOR = 2.42, P < 0.0001), and Black/African American race (AOR = 1.57, P = 0.02). Future days hospitalized was greater with Medicaid (Coefficient = 4.49, P = 0.001), 30-day prior admission (Coefficient = 2.08, P = 0.02), and Black/African American race (Coefficient = 2.16, P = 0.01). Any future hospitalization cost was less likely among patients ages 65-74 and 75+ (AOR = 0.54, P = 0.02; AOR = 0.53, P = 0.02); more likely with Medicaid (AOR = 1.67, P = 0.01), 30-day prior admission (AOR = 1.81, P = 0.0001), and Black/African American race (AOR = 1.40, P = 0.02). Total future hospitalization costs were lower for females (Coefficient = -3616.64, P = 0.03); greater with Medicaid (Coefficient = 7388.43, P = 0.01), 30-day prior admission (Coefficient = 3868.07, P = 0.04), and Black/African American race (Coefficient = 3856.90, P = 0.04). Do-not-resuscitate documentation (48%) differed by race. CONCLUSIONS: Among PCC patients, Black/African American race and social determinants of health were risk factors for future hospitalization utilization and costs. Medicaid use predicted hospice discharge. Social support interventions are needed to reduce future hospitalization disparities.


Subject(s)
Hospice Care , Hospices , Aftercare , Aged , Female , Hospitalization , Humans , Palliative Care , Patient Discharge , Referral and Consultation , Retrospective Studies , United States
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