Protection of human participants is a fundamental facet of biomedical research. We report the activities of a health service research study in which there were three institutional review boards (IRBs), three legal departments and one research administration department providing recommendations and mandating changes in the study methods. Complying with IRB requirements can be challenging, but can also adversely affect study outcomes. Multiple protocol changes mandated from multiple IRBs created a research method that was not reflective (...) of how substance use screening would be performed in a clinical setting. There was direct conflict between the IRBs' perceptions of participants' protection with the researchers' need to use research methodology that assures the clinical relevancy of results. (shrink)

It is nearly 20 years since Tony Hope wrote an editorial in this journal on Empirical Medical Ethics,1 arguing for both a recognition of the increasing amount of work being done in ‘empirical ethics’ and for its importance as a new direction for medical ethics research. Since then empirical ethics has flourished, with debates over the role of ‘empirical’ data in ethical reasoning producing a growing body of literature and the JME and other bioethics journals regularly publishing empirical studies. (...) While bio/medical ethics has grappled with ‘incorporating’ or using more empirical data in ethical analysis, with varying degrees of success, and some criticism, there has not been a corresponding willingness of more empirical disciplines to embrace ethical analysis. This is a particular lack for applied research areas that see their role as predominately influencing policy and practice, such as health services research. Health services research ‘is the integration of epidemiological, sociological, economic, and other analytic sciences in the study of health services.’ Whose ‘main goals … are to identify the most effective ways to organize, manage, finance, and deliver high quality care; reduce medical errors; and improve patient safety’.2 Health services research brings together a wide variety of disciplines and would seem ideally placed to include ethics. However, if you search health services research journals and conference programmes there is very little consideration of ethics as a substantive topic and often scant attention paid to the ethical issues that might be raised by an intervention or policy. Ethics and ethical issues are generally confined to discussions over priority setting, and occasionally health technology assessment, with other areas of health service research seldom engaging in ethical debate. In the Encyclopaedia of Health Services Research,3 ethics …. (shrink)

A commentary on “‘Ever Vigilant’ in ‘Ethically Impossible’: Structural Injustice and Responsibility in PHS Research in Guatemala,” from the May‐June 2013 issue.

Ethics committees now require that individuals give informed consent to much health services research, in the same way as for clinical research. This is misguided. Existing ethical guidelines do not help us decide how to seek consent in these cases, and have allowed managerial experimentation to remain largely unchecked. Inappropriate requirements for individual consent can institutionalise health inequalities and reduce access to services for vulnerable groups. This undermines the fundamental purpose of the National (...) class='Hi'>Health Service , and ignores our rights and duties as its members, explored here. Alternative forms of community consent should be actively pursued. (shrink)

Using the infamous research studies in Tuskegee and Guatemala, the article examines the difference between victims and bystanders. The victims can include families, sexual partners, and children not just the participants. There are also the bystanders in the populations who are affected, even vaguely, decades after the initial studies took place. Differing reparations for victims and bystanders through lawsuits and historical acknowledgments has to be part of broader discussions of historical justice, and the weighing of the impact of racism (...) and imperial research endeavors. (shrink)

Racial and ethnic variables are routinely used in health services research. However, there is a growing debate within nursing and other disciplines about the usefulness of these variables in research. A qualitative study was undertaken (July 2004 – November 2004) to ascertain how researchers conceptualize and operationalize racial and ethnic data. Data were derived from interviews with 33 participants in academic health centers in differing geographic regions. Content analyses extracted manifest and latent meanings to construct (...) categories depicting respondents' understandings of race and ethnicity in research. Race and ethnicity held several meanings but the subtext was often not clear because these terms were not operationalized. Measuring race and ethnicity quantitatively necessitated uniform classifications thus it was often necessary to impose a single racialized identity. Respondents recognized the problems with racial and ethnic variables but the majority still believed these variables were necessary and useful. Several researchers understood that racial and ethnic variables were used in ways that may stigmatize the populations studied. These respondents collected data on variables other than race and ethnicity to ascertain the causes of health differentials. The policy recommendation calls for a shift in thinking about how to use racial and ethnic variables in research. (shrink)

Science and Ethics inextricably intertwinedDawson and Yentis argue that research ethics committees have an obligation to consider the science of applications because this is inextricably entwined with ethics. They lament the fact that the recent English ministerial review of RECs suggests that science should be assessed by others for RECs and not by the committee members themselves. In fact, these views are not as incompatible as they might first appear.The plain truth of the matter is that in a maximum (...) membership of 18, at least a third of whom must be lay members, the capacity of each of the 186 RECs currently in the UK to review …. (shrink)

Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. (...) This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. (shrink)

Involuntary commitment links the healthcare, public health, and legislative systems to act as a “carceral health-service.” While masquerading as more humane and medicalized, such coercive modalities nevertheless further reinforce the systems, structures, practices, and policies of structural oppression and white supremacy. We argue that due to involuntary commitment’s inextricable connection to the carceral system, and a longer history of violent social control, this legal framework cannot and must not be held out as a viable alternative to the criminal (...) legal system responses to behavioral and mental health challenges. Instead, this article proposes true alternatives to incarceration that are centered on liberation that seeks to shrink the carceral system’s grasp on individuals’ and communities’ lives. In this, we draw inspiration from street-level praxis and action theory emanating from grassroots organizations and community organizers across the country under a Public Health Abolition framework. (shrink)

The ethics review of qualitative health research poses various challenges that are due to a mismatch between the current practice of ethics review and the nature of qualitative methodology. The process of obtaining ethics approval for a study by a research ethics committee before the start of a research study has been described as “procedural ethics” and the identification and handling of ethical issues by researchers during the research process as “ethics in practice.” While some (...) authors dispute and other authors defend the use of procedural ethics in relation to qualitative health research, there is general agreement that it needs to be supplemented with ethics in practice. This article aims to provide an illustration of research ethics in practice by reflecting on the ways in which we identified and addressed ethical and methodological issues that arose in the context of an interview study with mental health service users and relatives. We describe the challenges we faced and the solutions we found in relation to the potential vulnerability of research participants, the voluntariness of consent, the increase of participant access and the heterogeneity of the sample, the protection of privacy and internal confidentiality, and the consideration of personal and contextual factors. (shrink)

Health systems research is widely identified as an indispensable means to achieve the goal of health equity between and within countries. Numerous health systems research consortia comprised of institutions from high-income countries and low and middle-income countries are currently undertaking programs of research in LMICs. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Recent conceptual work has explored (...) what features might be necessary for health systems research consortia and their research programs to promote health equity. Identified features include selecting research priorities that focus on improving access to high-quality health services and/or financial protection for disadvantaged populations in LMICs and conducting research capacity strengthening that promotes the independent conduct of health systems research in LMICs. Yet, there has been no attempt to investigate whether existing consortia have such characteristics. This paper describes the results of a survey undertaken with health systems research consortia leaders worldwide to assess how consistent current practice is with the proposed ethical guidance. The findings suggest that consortia may be fairly well organised to promote health equity, but have scope for improvement, particularly in terms of achieving inclusive priority-setting. (shrink)

In 1997 President Clinton apologized to the survivors of the U.S. Public Health Service Syphilis Study. Since then, two of his recommendations have received little attention. First, he emphasized the need to remember the shameful past so we can build a better future for racial'ethnic minority populations. Second, he directed the creation in partnership with higher education to prepare training materials that would instruct biomedical researchers on the application of ethical principles to research with racial/ethnic minority populations. This (...) article proposes the inclusion of these issues in the implementation of the Affordable Care Act. It asks, What is the right or good thing to do? What are our obligations to one another? Two challenges are examined: (a) Conducting research with African Americans without knowledge of bioethics specific to this population, and (b) the ethical dilemma of conducting research that does not adequately take into account the diversity within the Black population that is a contributing factor in health disparities. Training and policy recommendations responsive to President Clinton's Apology are presented. (shrink)

A significant number of inmates with mental illness reside within the New York State Department of Corrections (NYSDOCS). New York State has taken the initiative to provide mentally ill inmates with necessary services through a collaboration of the New York State Department of Correctional Services and the New York State Office of Mental Health (NYSOMH). The collaboration results in a mental health delivery system that provides many essential services to mentally ill inmates. This paper focuses (...) on the organization of mental health services within NYSDOCS, best practices, past and current litigation, and staff responsibilities. As the population of mentally ill inmates continues to grow, implications for the Human Services professions of OMH and DOCS needs to continue to address and provide adequate mental health care and resources for this special population. (shrink)

The mission of the Indian Health Service affects what research is done and how It is reviewed and managed and in turn affects the forms and process used to obtain informed consent. Consent forms must be Informative and understandable to American Indian and Alaska Native potential volunteers; the process used to obtain informed consent must minimize any institutional pressure to participate. The IHS Institutional Review Boards developed seven research Model Volunteer Consent Forms.

Over the past three decades, two separate federal regulatory structures have emerged, each seeking to assure separate aspects of the integrity and ethics of research conducted using federal funding. One set of regulations is described in the Public Health Service Policies on Research Misconduct and relates to research misconduct, defined as consisting of fabrication of data or results, falsification of data and results, or plagiarism, in accordance with the federal‐wide definition adopted by the Office of Science (...) and Technology Policy. The second set of regulations, set forth in the Department of Health and Human Services regulations on the protection of human subjects (known as the “Common Rule”), prescribes a set of ethical and procedural protections for research involving human subjects.These two sets of research regulations are distinguished from each other by having different foci of enforcement, priorities of protection, oversight officials, oversight procedures, seizure of evidence, standards of proof, expectations of privacy, and appeal procedures for researchers who are subject to adverse findings and penalties. These differences are significant and fundamental. They complicate the process of compliance for institutions and researchers, who are expected to adhere to both sets of standards for the same federally funded research activities in research with human subjects. Compliance is especially complicated when suspected violations of both sets of standards must be investigated and resolved concurrently. This document represents an effort to provide institutions and individuals with practical suggestions as they try to comply with both sets of regulations. (shrink)

The Norwegian Parliament has decided to give priority to ethics in municipal health services. This priority is supposed to raise competence in ethics within municipal health services. As part of the national project, the participating municipalities were encouraged to develop and carry out local projects. In this article, we present a local ethics project in one of the participating municipalities in central eastern Norway. The local project for raising competence in ethics was carried out in cooperation (...) with researchers at the Centre for Medical Ethics (CME) at the University of Oslo. Most people agree that ethics are important in health services. However, there are many ways to increase competence in ethics and to stimulate ethical reflection. In this article we present a broad overview of this local ethics project, but special focus will be put on presenting the actions that have been used for increasing the level of ethical competence and stimulating ethical reflection among the participants. We describe our evaluation of the project and the research we carried out. Explanations will be given for the thought process behind the decisions that were made. (shrink)

Privacy is a key ethical principle in occupational health services. Its importance is emphasised in several laws, in ethical codes of conduct as well as in the literature, yet there is only very limited empirical research on privacy in the occupational health context. Conceptual questions on privacy in the occupational health context are discussed. The baseline assumption is that, in this context, privacy cannot be approached and examined only from the employee’s vantage point but the (...) employer’s point of view must also be taken into account, and that the concept has several dimensions . Even though privacy is a basic human need, there is no universally accepted definition of the concept and no consensus on whether an organisation can have privacy in the same way as people do. Many of the challenges surrounding privacy in the context of occupational health seem to be associated with the dual loyalties of occupational health professionals towards the employee and employer and with their simultaneous duties of disseminating and protecting information . Privacy is thus not an absolute value, but more research is needed to understand its multidimensional nature in the context of occupational health. (shrink)

Mobile health services have been widely used in medical services and health management through mobile devices and multiple channels, such as smartphones, wearable equipment, healthcare applications, and medical platforms. However, the number of the users who are currently receiving the mHealth services is small. In China, more than 70% of internet users have never used mHealth services. Such imbalanced situation could be attributed to users’ traditional concept of medical treatment, psychological factors and privacy concerns. (...) The purpose of this study is to explore the direct and indirect effects of mHealth users’ self-efficacy and privacy concerns on their intention to adopt mHealth services, providing guidelines for mHealth service providers to enhance users’ intention of adoption. A questionnaire was designed by the research team and 386 valid responses were collected from domestic participants in China. Based on the unified theory of acceptance and use of technology model, a research model integrated self-efficacy and privacy concerns was constructed to investigate their effects on users’ intention to adopt mobile mHealth services. The results show that self-efficacy could facilitate users’ intention to adopt mHealth services, and had a significantly positive effect on perceived ubiquity, effort expectancy, performance expectancy and subjective norm. This study verifies the direct and indirect effects of self-efficacy and privacy concerns on users’ intention to adopt mHealth services, providing a different perspective for studying mHealth adoption behavior. The findings could provide guidelines for mHealth service providers to improve their service quality and enhance users’ intention of adoption. (shrink)

Systematic ethics support in community health services in Norway is in the initial phase. There are few evaluation studies about the significance of ethics reflection on care. The aim of this study was to evaluate systematic ethics reflection in groups in community health , - from the perspectives of employees participating in the groups, the group facilitators and the service managers. The reflection groups were implemented as part of a research and development project.

Barriers to mental health interventions globally remain a health concern; however, these are more prominent in low- and middle-income countries. The barriers to accessibility include stigmatization, financial strain, acceptability, poor awareness, and sociocultural and religious influences. Exploring the barriers to the utilization of mental health services might contribute to mitigating them. Hence, this research aims to investigate these barriers to mental health service utilization in depth at the Kabutare District Hospital of the Southern Province (...) of Rwanda. The qualitative approach was adopted with a cross-sectional study design. The participants were patients with mental illnesses seeking mental health services at the hospital. Ten interviews were conducted in the local language, recorded, and transcribed verbatim and translated by the researchers. Thematic analysis was applied to analyze the data collected. The results revealed that the most common barriers are fear of stigmatization, lack of awareness of mental health services, sociocultural scarcity, scarcity of financial support, and lack of geographical accessibility, which limit the patients to utilize mental health services. Furthermore, it was revealed that rural gossip networks and social visibility within the communities compounded the stigma and social exclusion for patients with mental health conditions. Stigmatization should be reduced among the community members for increasing their empathy. Then, the awareness of mental disorders needs to be improved. Further research in Rwanda on the factors associated with low compliance to mental health services with greater focus on the community level is recommended. (shrink)

This paper analyses the role chaplaincy plays in providing religious and spiritual care in the UK’s National Health Service. The approach considers both the current practice of chaplains and also the wider changes in society around beliefs and public service provision. Amid a small but growing literature about spirituality, health and illness, I shall argue that the role of the chaplain is changing and that such change is creating pressures on the identity and performance of the chaplain as (...) a religiously authorised health worker. I shall question whether either orthodox belief or religious belonging have any significant bearing on the patients’ demand for chaplaincy services. Utilising an example of chaplaincy work I shall argue that patient need constitutes the strongest platform for both practice development and an articulated understanding of what chaplains bring to health care. Drawing on a case study the definition and interpretation of spiritual need will be discussed in relation to chaplaincy practice. In conclusion, I shall set out the case for effective research to establish with greater precision the detail of the chaplain’s practice within a state-funded health system. (shrink)

Machine generated contents note: Introduction. -- Acknowledgments. -- The Author. -- 1 Ethical Theories and Bioethics in a Global Perspective. -- Theories of Ethics. -- Are Theories of Ethics Global? -- Can Theories of Ethics Encourage People to Do the Right Thing? -- 2 Autonomy and Informed Consent in Global Perspective. -- Ethical Principles and Practical Issues of Informed Consent. -- Does Informed Consent Really Matter to Patients? -- Is Informed Consent a Universal Principle or a Cultural Value? -- 3 (...) Withholding or Withdrawing Treatment and Physician-Assisted Suicide. -- Withholding or Withdrawing Treatment at the End of Life. -- Assisting Patients in Committing Suicide. -- 4 Ethical Issues in Reproductive Health. -- Ethics of Abortion in Different Times, Places, and Cultures. -- Current Ethical Issues in Abortion. -- Assisted Reproductive Technology and Stem Cell Research. -- Emergency Contraception. -- Ethics of Imposing Conditions on Funding. -- 5 Ethical Issues of Female Genital Mutilation. -- The Facts About FGM. -- FGM as a Challenge to Ethical Relativism. -- Ethics of FGM for Adult Women. -- 6 Ethical Issues of Research with Human Subjects. -- Background Information and the Belmont Report. -- Autonomy and Voluntary Informed Consent. -- Beneficence and Cost-Benefit Analysis. -- Issues of Justice and Fairness for Human Subjects. -- 7 The Right to Health Care, and Ethical Obligations to Provide Care. -- Is There an Ethical Right to Health Care? -- Ethical Obligations of Health Care Professionals. -- Ethical Obligations of for-Profit Health Care Providers. -- 8 Ethical Issues in Rationing and Allocation of Limited Resources. -- Levels of Allocating Resources. -- Methods of Rationing Health Resources. -- Comparative Effectiveness Research and Cost-Effectiveness Analysis. -- 9 Ethical Issues of Health Insurance and Health System Reform. -- Ethical Issues in Financing Health Services and Designing Insurance Systems. -- Fundamental Values of Health Systems. -- 10 Ethical Issues in the Movement of Patients Across National Borders. -- Ethical Duties to Provide Health Care to Undocumented Aliens. -- Ethical Issues in Medical Tourism. -- 11 Ethical Issues in the Movement of Health Care Professionals Across National Borders. -- Ethical Issues in the Migration of Health Professionals. -- Proposed Solutions and Their Ethical Implications. -- Fair Treatment of Health Care Workers from Other Countries. -- 12 Corruption and Informal Payments in Health Systems. -- Payment of Informal Fees by Patients and Their Families. -- Is Corruption Bad for Your (and Other People's) Health? -- References. -- Index. (shrink)

Many countries, including Australia, have established a national scheme that supports the recognition of a single ethical review for multi-centre research conducted in publicly funded health services. However, local site-specific governance review processes remain decentralised and highly variable. This short report describes the ethics and governance processes required for a negligible risk national survey of physiotherapy-led airway clearance services in Australia. We detail inconsistencies in research governance document preparation and submission (platforms, processes, forms and signatories) (...) and report the time cost and likely impact of these inconsistencies on health services research outcomes. Processes and strategies that facilitated success in this project are identified and summarised as helpful hints to other researchers looking to embark on negligible risk research in public health facilities. (shrink)

We explore whether a Rawlsian approach might provide a guiding philosophy for the development of a healthcare system, in particular with regard to resolving tensions between different groups within it. We argue that an approach developed from some of Rawls’ principles – using his ‘veil of ignorance’ and both the ‘difference’ and ‘just savings’ principles which it generates – provides a compelling basis for policy making around certain areas of conflict. We ask what policies might be made if those making (...) them did not know if one was patient, doctor, nurse or manager – in this generation or the next. We first offer a brief summary of Rawls’ approach and how we intend to extrapolate from it. We examine how this adapted Rawlsian framework could be applied to specific examples of conflict within healthcare; we demonstrate how this framework can be used to develop a healthcare service which is both sustainable (in its training and treatment of staff, and in encouraging research and innovation) and open (to protect the powers and opportunities of those using the health service). We conclude that while Rawls’ approach has previously been rejected as a means to address specific healthcare decisions, an adapted veil of ignorance can be a useful tool for the consideration of how a just health service should be constructed and sustained. Turning the theoretical into the practical (and combining Rawls’ thought experiment with Scanlonian contractarianism), managers, doctors, patients, carers and nurses could come together and debate conflicting issues behind a hypothetical veil. (shrink)

The acknowledgement of basic human vulnerability in relationships between mental health service users and professionals working in community-based mental health services (in Norway) was a starting point. The purpose was to explore how users of these services describe and make sense of their meetings with other people. The research is collaborative, with researcher and person with experienced-based knowledge cooperating through the research process. Data is derived from 19 interviews with 11 people who depend on (...) mental health services for assistance at least three times a week. Data is analysed according to the Interpretative Phenomenological Analysis (IPA). Results confirm that reciprocity is fundamental for relationships, and that recognizing the individual entails personal involvement. The participants describe a struggle, and recognizing this struggle may help the professional to achieve a deeper understanding of the individual. (shrink)

One of the key criticisms of the ethical review process is the time taken to decision, and associated resource use. A key source of delay is that most submissions are required to respond to at leas...

This study’s objective was to understand Colombian adolescents’ experiences and preferences regarding access to sexual and reproductive health services (SRHS), either alone or accompanied. A mixed-method approach was used, involving a survey of 812 participants aged eleven to twenty-four years old and forty-five semi-structured interviews with participants aged fourteen to twenty-three. Previous research shows that adolescents prefer privacy when accessing SRHS and often do not want their parents involved. Such findings align with the longstanding tendency to frame (...) the ethical principle of autonomy as based on independence in decision-making. However, the present study shows that such a conceptualization and application of autonomy does not adequately explain Colombian adolescent participants’ preferences regarding access to SRHS. Participants shared a variety of preferences to access SRHS, with the majority of participants attaching great importance to having their parents involved, to varying degrees. What emerges is a more complex and non-homogenous conceptualization of autonomy that is not inherently grounded in independence from parental involvement in access to care. We thus argue that when developing policies involving adolescents, policymakers and health professionals should adopt a nuanced “relational autonomy” approach to better respect the myriad of preferences that Colombian (and other) adolescents may have regarding their access to SRHS. (shrink)

ABSTRACTDeveloping strategies to reduce inequities in health requires an understanding of how inequities occur, determining the salient factors in their production, and deciding which ones are most amenable to change. The recognition of several principles regarding the manifestations and genesis of inequities can help to decide on strategies. In making decisions, it is important to consider whether the aim is to reduce disparities in the occurrence of ill health or to reduce disparities in the severity of ill (...) class='Hi'>health. Evidence shows that the major impact on equity of health services, particularly regarding their potential to reduce severity, is attributable to the strength of primary care resources and services in communities and countries. Virtually every influence on the genesis of inequities is determined by the political context in which policy is made. The issue of health services is not different in this regard from other types of strategies.There is no longer any doubt about the pervasive influence of social factors on health. Almost two centuries of descriptive research provides convincing evidence of associations between social structures and relationships and health status in all countries and in all societies; if there is anything new from more recent research, it is that the association is not limited to differences between the lowest social strata and other social strata. Rather, the association is noted throughout the social spectrum. That is, there is a social gradient in health such that, for many if not most manifestations of ill health, the lower the social stratum, the worse the health.The challenge for the future is to understand why this is the case, to create a consensus that these inequalities are unnecessary and unacceptable, and to devise strategies that are both effective and possible. This paper will focus on the first of these aims, in a context that facilitates attention to the second and third aims. (shrink)

This article examines the responsibilities of researchers who conduct exploratory research to provide a service to vulnerable respondents. The term “service” is used to denote the provision of a tangible benefit in relation to the research question that is apart from the altruistic research benefits. This article explores what this “service” could look like, who might be responsible for providing it, and the challenges associated with such a service. The article argues that not providing a tangible benefit (...) to vulnerable research participants is inconsistent with the principle of social justice that undergirds much of the rationale for conducting health disparities research. (shrink)

There is considerable uncertainty about the implications of the new genetics for health services. These are the enthusiasts who argue that molecular genetics will transform health care and others argue that the scope for genetic interventions is limited. The aim of this paper is to examine some of the questions, tensions and difficulties which face health care providers particularly in developed countries as they try to come to terms with the dilemmas raised by new genetic (...) class='Hi'>health care technologies (NGHTs). It identifies questions for research which may help the development of robust and flexible strategies for implementation. (shrink)

Discourse and rhetoric of service-user involvement are pervasive in all mental health services that see themselves as promoting a Recovery ethos. Yet, for the service-user movement internationally, ‘Recovery’ was articulated as an alternative discourse of overcoming and resisting an institutionalized and oppressive psychiatric model of care. Power is all pervasive within mental health services yet often overlooked in official discourse on user-involvement. Critical research is required to expose the unacknowledged structural and power constraints on participants. (...) My research problematizes practices of user involvement in one mental health service area in Ireland. Part I of this article examines the background context of policies and practices of user-involvement from the service-user perspective and explains developments in relation to service-user involvement in the case of Ireland. Participants in my study articulate their motivation for engagement with mental health service reform in terms of the right to participate in social justice terms, of wanting to improve services and humanise care. Power dynamics emerge as one of the primary obstacles to equitable involvement. Part II of this article presents an explanatory framework of power, using a model developed in the field of development studies; Gaventa’s (2006) ‘power cube.’ The three dimensions of the cube represent the forms, spaces and levels of power. The explanatory potential of this model to highlight how hidden and invisible power operates in mental health services is illustrated by selected comments from the same participants. The power cube is a useful tool to illuminate the dynamics occurring in service-user involvement spaces. Showing how different forms of power operate in the spaces and levels of mental health involvement can develop service-users’ awareness of the hidden and invisible aspects of power. Through this awareness, they can strategize around their potential to influence decision-making in mental health services. (shrink)

Ethical decision-making is often evaluated in the literature through deontological and teleological approaches, commonly referred to as ethical positions. Ethical decision-making requires an awareness of ethical sensitivity and ethical dilemmas. It involves understanding the emotional experiences of others and assisting them. In cases of alexithymia, where there is difficulty in understanding and expressing emotional experiences, empathy may be limited, and emotions may not be effectively used. In this research, the impact of the level of alexithymia on ethical positions in (...) students of the School of Health Services, along with demographic variables, was evaluated. In this descriptive research using a quantitative research approach, data was obtained using the "Ethical Position Scale-EPQ" and the "Toronto Alexithymia Scale-TAS." Analysis was performed using the reliability testing, t-test, One-Way ANOVA Test, LSD multiple comparison test, and Pearson Correlation and Regression Analysis test were used. In ethical decision-making, it has been found that women are more idealistic than men, while men tend to be more alexithymic and deficient in outward thinking. As students' levels of alexithymia increase, they are determined to adopt a more relativistic approach. It has been observed that relativism increases and idealism decreases significantly among individuals with high alexithymia scores. These findings indicate that the level of alexithymia has a significant impact on ethical positions. The fact that individuals with high levels of alexithymia adopt a subjective position that is less concerned with the consequences of an action on others and resembles egoism suggests that these individuals may have difficulty in empathizing due to emotional inadequacy. (shrink)

Resumen Ésta es la primera traducción al español de las guías “Atención después de la investigación: un marco para los comités de ética de investigación del National Health Service (NHS) (borrador versión 8.0)”. El documento afirma que existe una fuerte obligación moral de garantizar que los participantes enfermos de un estudio clínico hagan una transición después del estudio hacia una atención de la salud apropiada. Con “atención de la salud apropiada” se hace referencia al acceso para los participantes a (...) la atención de la salud, proporcionada principalmente por el National Health Service (en adelante NHS), el sistema de salud del Reino Unido, y/o a la intervención en estudio, también llamada producto o tratamiento en investigación. Las guías “Atención después de la investigación” están dirigidas principalmente a los miembros de los 79 comités de ética de investigación del NHS y a quienes presentan sus estudios de investigación ante estos comités. Se trata de un documento borrador muy avanzado, trabajado en numerosas reuniones, durante más de 3 años, que ha sido discutido por participantes de estudios y miembros de la comunidad, miembros y presidentes de comités de ética de investigación del Reino Unido, especialistas internacionales en ética de la investigación, representantes de la industria y otras partes interesadas. La redacción de las guías es producto de la colaboración de Neema Sofaer y Penney Lewis, ambas investigadoras del King’s College London, en el Centre of Medical Law and Ethics del Dickson Poon School of Law, y Hugh Davies, Asesor en Ética de la Investigación de la Health Research Authority (HRA) del NHS. El traductor del presente documento, Ignacio Mastroleo, participó del workshop en la Fundación Brocher (Ginebra, Suiza, diciembre de 2011) donde se revisó el borrador versión 7.0 y contribuyó en la revisión del borrador de la versión 8.0 durante el 2012. -/- Abstract This is the first Spanish translation of the guidelines “Care after research: a framework for NHS RECs (8th draft)”. The document states that there is a strong moral obligation to ensure that participants in a clinical study who are ill transition after the study to appropriate healthcare. The terms "appropriate healthcare" refer to participants’ access to health care, mainly provided by the National Health Service (NHS), the health system in the UK, and/or to the intervention study also named investigational treatment or product. The guides "Care after research" are mainly directed to members of the 79 NHS committees of research ethics (RECs) and to those who submit their research to these committees. This is a very advanced draft document, worked in several meetings, for more than three years, that has been discussed with study participants and community members, members and chairs of RECs in the UK, international specialists in research ethics, industry representatives and other stakeholders. The drafting of the guidelines is the result of the collaboration of Neema Sofaer and Penney Lewis, both researchers at King's College London, at the Centre of Medical Law and Ethics of Dickson Poon School of Law, and Hugh Davies, Research Ethics Advisor of the Health Research Authority (HRA) of the NHS. The translator of this document, Ignacio Mastroleo, attended the workshop at the Brocher Foundation (Geneva, Switzerland, December 2011) where draft version 7.0 was revised and contributed in the revision of draft version 8.0 during 2012. (shrink)

OBJECTIVES: To identify ethical dilemmas experienced by occupational and physical therapists working in the UK National Health Service (NHS). To compare ethical contexts, themes and principles across the two groups. DESIGN: A structured questionnaire was circulated to the managers of occupational and physical therapy services in England and Wales. SUBJECTS: The questionnaires were given to 238 occupational and 249 physical therapists who conformed to set criteria. RESULTS: Ethical dilemmas experienced during the previous six months were reported by 118 (...) occupational and 107 physical therapists. The two groups were similar in age, grade, and years of experience. Fifty of the occupational therapy dilemmas occurred in mental health settings but no equivalent setting emerged for physical therapy. Different ethical themes emerged between the two groups, with the most common in occupational therapy being difficult/dangerous behaviour in patients and unprofessional staff behaviour, and for physical therapists resource limitations and treatment effectiveness. No differences were found in the ethical principles used. CONCLUSION: The ethical dilemmas reported by the therapists were primarily concerned with health care ethics, rather than the more dramatic ethics reported in much of the biomedical ethics literature. Differences were found between the two professional groups when ethical contexts and themes were compared but not when ethical principles were compared. This suggests that educators and researchers need to be aware of work settings and the interdisciplinary nature of employment as well as ethical principles held by individual therapists. (shrink)

Objective Our study sought to (1) describe the practices and preferences of Colombian adolescents in accessing sexual and reproductive health services: accompanied versus alone; (2) compare actual practices with stated preferences; and (3) determine age and gender differences regarding the practice and these stated preferences. -/- Methods 812 participants aged 11–24 years old answered a survey in two Profamilia clinics in the cities of Medellin and Cali in Colombia. A cross-sectional analysis was performed to compare participants’ answers based (...) on the variables of gender and age. -/- Results A quarter of participants visited the clinic alone (25.4%). Females were more likely to go alone in comparison to males (26.3% vs 14.1%; p = 0.031), and older participants went alone more often than younger participants (p < 0.001). Most participants – 72.7% (95 %CI: 69.3–75.9) – expressed a preference in being accompanied to the clinic, and more than 90% had their preferences met. The preferences of older participants were, however, less likely to be met than those of younger participants (p < 0.001), notably, because they predominantly wanted to be accompanied. -/- Conclusion Contemporary public health and bioethics literature advocates in favor of developing health services that better meet the preferences of adolescents. The present research highlights an apparent blind spot related to the role that others (e.g., parents, friends, partners) can or should play in accompanying adolescent patients when they access sexual and reproductive health services. Respecting adolescents’ preferences, and hence their autonomy, is not simply a matter of ensuring freedom from constraints (e.g., their right and ability to go alone). Rather, it should also consider the liberty to choose whether to be accompanied when accessing SHRS and by whom. (shrink)