scholarly journals Ethical challenges of the healthcare transition to adult Antiretroviral therapy (ART) clinics for HIV infected adolescents and young people in Uganda

2020 ◽  
Author(s):  
Scovia Nalugo Mbalinda ◽  
Sabrina Bakeera-Kitaka ◽  
Derrick Lusota Amooti ◽  
Eleanor Namusoke Magongo ◽  
Philippa Musoke ◽  
...  
Keyword(s):  
Data Analysis ◽  
Patient Autonomy ◽  
Ethical Issues ◽  
Clinical Care ◽  
Hiv Care ◽  
Ethical Challenges ◽  
Successful Transition ◽  
Healthcare Transition ◽  
Increased Risk ◽  
Retention In Hiv Care

Abstract Introduction Many HIV infected adolescents require transfer of care from paediatric/ adolescent clinics to adult ART clinics. Transition is beset with factors that hinder or facilitate the process, thereby raising ethical challenges of the transition process. Decisions made regarding therapy, such as when and how to transition to adult HIV care, should consider ethical benefits and risks. Understanding and addressing ethical challenges in the healthcare transition could ensure a successful transition. The purpose of this study was to analyse the ethical challenges of transitioning HIV care for adolescents into adult HIV clinics. Method We conducted 18 focus group discussions among 191 adolescents attending 9 different health facilities in Uganda. We explored facilitators and barriers regarding adolescent transitioning to adult HIV clinics. Thematic data analysis was used to analyze the data. The Silences Framework guided the data analysis and interpretation. The principles of Bioethics and the four-boxes ethics framework for clinical care (Patient autonomy, Medical indications, Context of care and Quality of life) were used to analyze the ethical issues surrounding the transition to adult HIV care. Results The key emerging ethical issues were: reduced patient autonomy; increased risk of harm from stigma and loss of both privacy and confidentiality; unfriendly adult clinics induce disengagement and disruption of the care continuum; patient preference to transition as a cohort; and contextual factors are critical to successful transition. Conclusion The priority outcomes of the healthcare transition for adolescents should address ethical challenges of the healthcare transition to ensure retention in HIV care, facilitate long-term self-care, provide ongoing holistic healthcare and support in order to promote health and wellbeing, and build trust in the healthcare system. Identifying what facilitates successful transitions, and the gaps that interventions can target, may ensure HIV-infected youth remain healthy across the healthcare transition.

scholarly journals Ethical challenges of the healthcare transition to adult Antiretroviral therapy (ART) clinics for HIV infected adolescents and young people in Uganda

2021 ◽  
Author(s):  
Scovia Nalugo Mbalinda ◽  
Sabrina Bakeera-Kitaka ◽  
Derrick Lusota Amooti ◽  
Eleanor Namusoke Magongo ◽  
Philippa Musoke ◽  
...  
Keyword(s):  
Data Analysis ◽  
Young People ◽  
Patient Autonomy ◽  
Ethical Issues ◽  
Hiv Care ◽  
Ethical Challenges ◽  
Successful Transition ◽  
Healthcare Transition ◽  
Increased Risk ◽  
Retention In Hiv Care

Abstract Background Many adolescents and young people with HIV require the transfer of care from paediatric/ adolescent clinics to adult ART clinics. Transition is beset with factors that hinder or facilitate the process, thereby raising the transition process’s ethical challenges. Decisions made regarding therapy, such as when and how to transition to adult HIV care, should consider ethical benefits and risks. Understanding and addressing ethical challenges in the healthcare transition could ensure a successful transition. The purpose of this study was to analyse the ethical challenges of transitioning HIV care for adolescents into adult HIV clinics. Method We conducted 18 focus group discussions among 191 adolescents attending nine different health facilities in Uganda. We explored facilitators and barriers regarding adolescents transitioning to adult HIV clinics. Thematic data analysis was used to analyze the data. The Silences Framework guided data analysis and interpretation. The principles of Bioethics and the four-boxes ethics framework for clinical care (Patient autonomy, Medical indications, Context of Care and Quality of life) were used to analyze the ethical issues surrounding the transition to adult HIV care. Results The key emerging ethical issues were: reduced patient autonomy; increased risk of harm from stigma and loss of privacy and confidentiality; unfriendly adult clinics induce disengagement and disruption of the care continuum; patient preference to transition as a cohort and contextual factors are critical to a successful transition. Conclusion The priority outcomes of the healthcare transition for adolescents should address ethical challenges of the healthcare transition to ensure retention in HIV care, facilitate long-term self-care, provide ongoing holistic healthcare and support to promote health and wellbeing and build trust in the healthcare system. Identifying what facilitates successful transitions and the gaps that interventions can target may ensure adolescents and young people with HIV infectionremain healthy across the healthcare transition.

scholarly journals Ethical challenges of the healthcare transition to adult antiretroviral therapy (ART) clinics for adolescents and young people with HIV in Uganda

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Scovia Nalugo Mbalinda ◽  
Sabrina Bakeera-Kitaka ◽  
Derrick Lusota Amooti ◽  
Eleanor Namusoke Magongo ◽  
Philippa Musoke ◽  
...  
Keyword(s):  
Young People ◽  
Patient Autonomy ◽  
Ethical Issues ◽  
Transition Process ◽  
Hiv Care ◽  
Ethical Challenges ◽  
Successful Transition ◽  
Healthcare Transition ◽  
Increased Risk ◽  
Retention In Hiv Care

Abstract Background Whereas many adolescents and young people with HIV require the transfer of care from paediatric/adolescent clinics to adult ART clinics, this transition is beset with a multitude of factors that have the potential to hinder or facilitate the process, thereby raising ethical challenges of the transition process. Decisions made regarding therapy, such as when and how to transition to adult HIV care, should consider ethical benefits and risks. Understanding and addressing ethical challenges in the healthcare transition could ensure a smooth and successful transition. The purpose of this study was to analyze the ethical challenges of transitioning HIV care for adolescents into adult HIV clinics. Methods Data presented were derived from 191 adolescents attending nine different health facilities in Uganda, who constituted 18 focus group discussions. In the discussions, facilitators and barriers regarding adolescents transitioning to adult HIV clinics were explored. Guided by the Silences Framework for data interpretation, thematic data analysis was used to analyze the data. The principles of bioethics and the four-boxes ethics framework for clinical care (patient autonomy, medical indications, the context of care, and quality of life) were used to analyze the ethical issues surrounding the transition from adolescent to adult HIV care. Results The key emerging ethical issues were: reduced patient autonomy; increased risk of harm from stigma and loss of privacy and confidentiality; unfriendly adult clinics induce disengagement and disruption of the care continuum; patient preference to transition as a cohort, and contextual factors are critical to a successful transition. Conclusion The priority outcomes of the healthcare transition for adolescents should address ethical challenges of the healthcare transition such as loss of autonomy, stigma, loss of privacy, and discontinuity of care to ensure retention in HIV care, facilitate long-term self-care, offer ongoing all-inclusive healthcare, promote adolescent health and wellbeing and foster trust in the healthcare system. Identifying and addressing the ethical issues related to what hinders or facilitates successful transitions with targeted interventions for the transition process may ensure adolescents and young people with HIV infection remain healthy across the healthcare transition.

Test genetici e consenso informato

2012 ◽  
pp. 68-95
Author(s):  
Marco Seri ◽  
Claudio Graziano ◽  
Daniela Turchetti ◽  
Juri Monducci
Keyword(s):  
Dna Sequencing ◽  
Human Genetics ◽  
Ethical Issues ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Genome Project ◽  
Ethical Challenges ◽  
Sequencing Technologies ◽  
The Human Genome Project

The pace of discovery in the field of human genetics has increased exponentially in the last 30 years. We have witnessed the completion of the Human Genome Project, the identification of hundreds of disease-causing genes, and the dawn of genomic medicine (clinical care based on genomic information). Reduction of DNA sequencing costs, thanks to the so-called "next generation sequencing" technologies, is driving a shift towards the era of "personal genomes", but scientific as well as ethical challenges ahead are countless. We provide an overview on the classification of genetic tests, on informed consent procedures in the context of genetic counseling, and on specific ethical issues raised by the implementation of new DNA sequencing technologies.

scholarly journals Real-world ethics in palliative care: A systematic review of the ethical challenges reported by specialist palliative care practitioners in their clinical practice

2020 ◽  
pp. 026921632097427
Author(s):  
Guy Schofield ◽  
Mariana Dittborn ◽  
Richard Huxtable ◽  
Emer Brangan ◽  
Lucy Ellen Selman
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Clinical Practice ◽  
Ethical Issues ◽  
Clinical Care ◽  
Ethical Principles ◽  
Original Research ◽  
Specialist Palliative Care ◽  
Ethical Challenges ◽  
Ethical Practice

Background: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff. Aim: To synthesise the evidence regarding the ethical challenges which specialist palliative care practitioners encounter during clinical practice. Design: Systematic review with narrative synthesis (PROSPERO registration CRD42018105365). Quality was dual-assessed using the Mixed-Methods Appraisal Tool. Tabulation, textural description, concept mapping and thematic synthesis were used to develop and present the narrative. Data sources: Seven databases (MEDLINE, Philosopher’s Index, EMBASE, PsycINFO, LILACS, Web of Science and CINAHL) were searched from inception to December 2019 without language limits. Eligible papers reported original research using inductive methods to describe practitioner-reported ethical challenges. Results: A total of 8074 records were screened. Thirteen studies from nine countries were included. Challenges were organised into six themes: application of ethical principles; delivering clinical care; working with families; engaging with institutional structures and values; navigating societal values and expectations; philosophy of palliative care. Challenges related to specific scenarios/contexts rather than the application of general ethical principles, and occurred at all levels (bedside, institution, society, policy). Conclusion: Palliative care practitioners encounter a broad range of contextual ethical challenges, many of which are not represented in palliative care ethics training resources, for example, navigating institutional policies, resource allocation and inter-professional conflict. Findings have implications for supporting ethical practice and training practitioners. The lack of low- and middle- income country data needs addressing.

scholarly journals Ethical issues in the use of SMS messaging in HIV care and treatment in low- and middle-income countries: case examples from Mozambique

2017 ◽  
Vol 25 (4) ◽  
pp. 423-427 ◽  
Author(s):  
Ezequiel B Ossemane ◽  
Troy D Moon ◽  
Martin C Were ◽  
Elizabeth Heitman
Keyword(s):  
Large Scale ◽  
Ethical Issues ◽  
Scale Up ◽  
Hiv Care ◽  
Ethical Framework ◽  
Middle Income ◽  
Middle Income Countries ◽  
Retention In Hiv Care ◽  
Care And Treatment ◽  
Low And Middle Income

Abstract The introduction of mobile communication technologies in health care in low- and middle-income countries offers an opportunity for increased efficiencies in provision of care, improved utilization of scarce resources, reductions in workload, and increased reach of services to a larger target population. Short message service (SMS) technologies offer promise, with several large-scale SMS-based implementations already under way. Still largely lacking in the research literature are evaluations of specific ethical issues that arise when SMS programs are implemented and studied in resource-limited settings. In this paper, we examine the ethical issues raised by the deployment of SMS messaging to support patient retention in HIV care and treatment and in the research conducted to evaluate that deployment. We use case studies that are based in Mozambique and ground our discussion in the ethical framework for international research proposed by Emanuel et al., highlighting ethical considerations needed to guide the design and implementation of future SMS-based interventions. Such guidance is increasingly needed in countries such as Mozambique, where the local capacity for ethical study design and oversight is still limited and the scale-up and study of mHealth initiatives are still driven predominantly by international collaborators. These issues can be complex and will need ongoing attention on a case-by-case basis to ensure that appropriate protections are in place, while simultaneously maximizing the potential benefit of new mHealth technologies.

Ethical Issues in Treating Pain and Addiction (DRAFT)

2018 ◽  
Author(s):  
Christopher J. Spevak
Keyword(s):  
Ethical Decision Making ◽  
Ethical Issues ◽  
Human Subjects ◽  
Clinical Care ◽  
Hippocratic Oath ◽  
Treatment Programs ◽  
Ethical Challenges ◽  
Faith Based ◽  
History Of ◽  
History Of Medical Ethics

In addressing the ethical issues that arise in treating both pain and addiction, the author of this chapter has organized his presentation around: the history of medical ethics; theories and definitions; and the ethical challenges to providing clinical care. The theoretical underpinnings to ethical decision-making are important to providing the best possible outcome, and their evolution is described, from the Hippocratic Oath to current human subjects’ protection rules for clinical trials. The tension between patient autonomy and the physician’s obligation to protect is as high as that seen in parenthood, but commonly with even less control of the individuals involved. A framework is provided for examining clinical cases that aids in addressing such topics as treatment disagreement, confidentiality, informed consent, abandonment, pregnancy, and biases that may be seen with categorical treatment programs (e.g., abstinence-based, faith-based). A text box is added giving additional resources on the topics discussed.

The Learning Health Care System and Ethics: Challenges and Opportunities

2019 ◽  
pp. 158-172
Author(s):  
Stephanie Morain ◽  
Nancy E. Kass ◽  
Ruth R. Faden
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Ethical Issues ◽  
Care Delivery ◽  
Clinical Care ◽  
Knowledge Generation ◽  
Data Generation ◽  
Ethical Challenges ◽  
Learning Health Care System ◽  
Care System

This chapter introduces the concept of a learning health care system (LHCS) and discusses the ethical issues that arise within the LHCS context. The LHCS has gained attention as an organizational innovation to improve the quality and efficiency of health care. In an LHCS, knowledge generation is built into the ongoing practice of clinical care, and findings based on this knowledge are continuously fed back to improve care delivery. The goals of an LHCS are arguably consistent with the moral obligation of health systems to improve quality, safety, and justice in health. However, the LHCS model also presents potential ethical challenges. This article discusses challenges related to continuous data generation, including maintaining privacy and confidentiality; obligations related to data on cost and quality; transparency to patients and other stakeholders; and data interoperability. It also describes issues related to the continued appropriateness of the research-practice distinction and implications for ethical oversight.

scholarly journals A qualitative description of service providers’ experiences of ethical issues in HIV care

2018 ◽  
Vol 26 (5) ◽  
pp. 1540-1553
Author(s):  
Motshedisi B Sabone ◽  
Keitshokile Dintle Mogobe ◽  
Ellah Matshediso ◽  
Sheila Shaibu ◽  
Esther I Ntsayagae ◽  
...  
Keyword(s):  
Health Service ◽  
Ethical Issues ◽  
Service Providers ◽  
Hiv Care ◽  
Ethical Review ◽  
Ethical Challenges ◽  
Group Discussions ◽  
Health Service Providers ◽  
Hiv Service Providers ◽  
Review Boards

Background: Managing HIV treatment is a complex multi-dimensional task because of a combination of factors such as stigma and discrimination of some populations who frequently get infected with HIV. In addition, patient-provider encounters have become increasingly multicultural, making effective communication and provision of ethically sound care a challenge. Purpose: This article explores ethical issues that health service providers in the United States and Botswana encountered in their interaction with patients in HIV care. Research design: A descriptive qualitative design was used to collect data from health service providers and patients using focused group discussions. This article is based on responses from health service providers only. Participants and context: This article is based on 11 focused group discussions with a total sample of 71 service providers in seven US sites and one Botswana site. Ethical considerations: Ethical review boards at all the study sites reviewed the study protocol and approved it. Ethical review boards of the study’s coordinating centers, Rutgers University and the University of California at San Francisco, also approved it. The study participants provided a written informed consent to participate. Findings: HIV service providers encountered ethical challenges in all the four Beauchamp and Childress’ biomedical ethics of respect for patients’ autonomy, beneficence, justice, and nonmaleficence. Discussion: The finding that HIV service providers encounter ethical challenges in their interaction with patients is supported by prior studies. The ethical challenges are particularly prominent in multicultural care and resource-constrained care environments. Conclusion: Provision of HIV care is fraught with ethical challenges that tend to pose different issues depending on a given care environment. It is important that strong partnerships are developed among key stakeholders in HIV care. In addition, health service providers need to be provided with resources so they can provide quality and ethically sound care.

scholarly journals Considerations for applying bioethics norms to a biopharmaceutical industry setting

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Luann E. Van Campen ◽  
◽  
Tatjana Poplazarova ◽  
Donald G. Therasse ◽  
Michael Turik
Keyword(s):  
Public Health ◽  
Ethical Issues ◽  
Contextual Factors ◽  
Clinical Care ◽  
Health Programs ◽  
Biopharmaceutical Industry ◽  
Ethical Challenges ◽  
Legal Compliance ◽  
Multiple Stakeholders ◽  
Public Health Programs

AbstractBackgroundThe biopharmaceutical industry operates at the intersection of life sciences, clinical research, clinical care, public health, and business, which presents distinct operational and ethical challenges. This setting merits focused bioethics consideration to complement legal compliance and business ethics efforts. However, bioethics as applied to a biopharmaceutical industry setting often is construed either too broadly or too narrowly with little examination of its proper scope.Main textAny institution with a scientific or healthcare mission should engage bioethics norms to navigate ethical issues that arise from the conduct of biomedical research, delivery of clinical care, or implementation of public health programs. It is reasonable to assume that while bioethics norms must remain constant, their application will vary depending on the characteristics of a given setting. Context “specification” substantively refines ethics norms for a particular discipline or setting and is an expected, needed and progressive ethical activity. In order for this activity to be meaningful, the scope for bioethics application and the relevant contextual factors of the setting need to be delineated and appreciated. This paper defines biopharmaceutical bioethics as:the application of bioethics norms (concepts, principles, and rules) to the research, development, supply, commercialization, and clinical use of biopharmaceutical healthcare products. It provides commentary on this definition, and presents five contextual factors that need to be considered when applying bioethics norms to a biopharmaceutical industry setting: (1) dual missions; (2) timely and pragmatic guidance; (3) resource stewardship; (4) multiple stakeholders; and (5) operational complexity.ConclusionUnderstanding the scope of the biopharmaceutical enterprise and contextual factors of a biopharmaceutical industry setting is foundational for the application of bioethics norms. Establishing a common language and approach for biopharmaceutical bioethics will facilitate breadth and depth of discussion and subsequent implementation to benefit patients, the healthcare system and society.

Abstract WMP55: HIV Viral Load and Stroke Risk

Stroke ◽  
2020 ◽  
Vol 51 (Suppl_1) ◽  
Author(s):  
Barbara Harding ◽  
Tigran Avoundjian ◽  
Susan R Heckbert ◽  
Bridget M Whitney ◽  
Robin M Nance ◽  
...  
Keyword(s):  
Viral Load ◽  
Hemorrhagic Stroke ◽  
Stroke Risk ◽  
Clinical Care ◽  
Research Network ◽  
Hiv Care ◽  
Baseline Viral Load ◽  
People Living With Hiv ◽  
High Baseline ◽  
Increased Risk

Background: Among people living with HIV (PLWH), elevated plasma HIV RNA (viral load, [VL]), indicative of increased inflammation, may be associated with greater risk of stroke. Methods: Among adult PLWH receiving clinical care at six Centers for AIDS Research Network of Integrated Clinical Systems (CNICS) sites across the U.S. from January 2006 through January 2015, first ischemic or hemorrhagic stroke was identified from adjudicated clinical events. We considered baseline and time-updated VL. Baseline viral load was defined as the most recent viral load before 2006 or at CNICS cohort entry (if after 2006). Cox proportional hazards models were used to assess the relationship between baseline VL and time-updated VL and stroke. We estimated hazard ratios for risk of stroke (all stroke, and ischemic and hemorrhagic stroke separately) comparing the 75 th percentile of VL (“high VL”) to the 25 th percentile (“low VL”). All models were adjusted for age, sex, race/ethnicity, CNICS site, diabetes, treated hypertension, statin use, smoking, nadir CD4, BMI, hepatitis C virus coinfection, and baseline ART use. The hemorrhagic stroke model was also adjusted for FIB-4. Results: Among 16,648 PLWH over an average follow-up of 4.7 years, there were 146 total strokes (119 ischemic; 19 hemorrhagic). At baseline, the median VL was 41 copies/mL (IQR: 24, 3860). Individuals with high baseline VL were 1.57 times more likely to have a stroke than individuals with low baseline VL (95% CI: 1.22, 2.04). In addition, high baseline VL was associated with increased risk of ischemic stroke (HR: 1.48; 95% CI: 1.11, 1.97) and hemorrhagic stroke (HR: 2.5; 95% CI: 1.25, 4.98). The HR for all strokes comparing high VL and low VL individuals using time-updated VL was 1.84 (95% CI: 1.42-2.40). Conclusion: Our findings suggest that higher VL is associated with stroke risk after adjusting for traditional stroke risk factors, and may have a greater impact on incidence of hemorrhagic stroke. In addition to reducing HIV-related morbidity and mortality, improving HIV care may also reduce stroke risk.

Sign in / Sign up

Export Citation Format

Share Document