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)

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)

Adolescent sexuality is one of the most important reproductive health issues that confronts healthcare professionals with moral dilemmas and legal issues. In this study, we aim to justify the at-risk adolescents’ regulations on access to key reproductive health services (KRHSs) based on principles of Islamic biomedical ethics and jurisprudence. Despite the illegitimacy and prohibition of sexuality for both girls and boys in Islamic communities, in this study, using 5 principles or universal rules of purpose; certainty, no-harm; necessity; (...) and custom, we argue that first, applying these principles in the context of the no-harm principle can provide the best interests of at-risk adolescents; second, it is permissible to provide KRHSs to these adolescents with their own assent, as long as necessary, only with the intention of preventing or reducing harm. In this framework, while preventing harm, it tries to provide the best interests of at-risk adolescent. Thus, the principle of no-harm requires that the government, by designating the responsibility to healthcare professionals, protects at-risk adolescents from harm, and obliges these professionals to choose and implement the option that best suits adolescents’ interests. (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)

The outbreak of the COVID-19 pandemic had an impact on the global economy, including the provision of health services, with medical facilities and patients cancelling or postponing medical appointments. An alternative to in-person appointments was through the available forms of telemedicine. Scientific reports around the world have suggested that the accessibility and quality of health services declined. The aim of this study was to investigate the accessibility and quality of health services in (...) Poland and to verify whether there were differences between men and women in this respect. The study was based on the authors’ own survey questionnaire filled in by 265 respondents, including 181 women, 82 men, and 2 persons without a defined gender. The study revealed that during the COVID-19 pandemic, the accessibility and quality of health services declined. Additionally, women were more likely to use general and specialist health services than men, but a comparison of changes in the assessment of accessibility and quality of services by gender revealed no differences in the assessment of accessibility and quality. (shrink)

In 1989 the Oregon Legislature voted not to wait any longer for national leaders to serve up a solution to the problem of the millions of Americans (450,000 in Oregon) who are uninsured for health care. Under the leadership of Senator John Kitzhaber, President of the Oregon Senate, the lawmakers put together a package of bills designed to bring every Oregonian the security of third party financing for needed health care. The Oregon Plan's key innovation is the idea (...) that, from a societal perspective, some health services can be declared more important than others. From that central idea came the thought that the whole range of health services could be arrayed to reflect social priorities relevant to Medicaid budgeting and the design of new health insurance programs for “the uninsured.”. (shrink)

Asylum-seeking and refugee women (ASRW) are population groups characterized by diverse social, economic and legal backgrounds as well as diverse needs. Their backgrounds of forced migration have a profound impact on their overall health, including their sexual and reproductive health (SRH). In Europe, the SRH needs of ASRW are usually more pressing than those of the host country population. In the context of refugee health, it is important to distinguish between asylum seekers and statutory refugees, as asylum (...) seekers have distinct needs and often limited rights in their host country. Yet both groups face many barriers in accessing national health services. This article addresses the issue of entitlements to health services for asylum-seeking women in Europe, and highlights the wide range of difficulties of both asylum-seeking and refugee women in accessing (sexual and reproductive) health services. (shrink)

There are conceptual and ethical challenges to defining adolescents’ autonomy to access health care, and these can lead to health care norms and practices that could be maladjusted to the needs and preferences of adolescents. Particularly sensitive is access to sexual and reproductive health care services (SRHS). Yet, while there has been substantial conceptual work to conceptualize autonomy (e.g., as independence), there is a lack of empirical research that documents the perceptions of adolescents regarding on how (...) they access or wish to access health care services. The main objectives of this research were to (a) understand how adolescents in Colombia interpret the concept of “autonomy,” (b) describe how these adolescents articulate their autonomy (i.e., preferences) in accessing SRHS, and (c) analyze the ethical issues emerging from these data. Forty-five semi-structured interviews were conducted with participants aged 14 to 23 years old in the Departments of Antioquia and Valle del Cauca in Colombia. Our study showed that participants’ understanding of autonomy was context-based and highly dependent on personal experiences, and these influenced their choice in how to access SRHS. Seen through the ethical lens of a reproductive justice framework, our results highlight the unequal opportunities for adolescents in terms of autonomy to access SRHS. (shrink)

Nearly $2 trillion is spent annually in the U.S. treating chronic illness — yet accessibility to quality health care services in rural communities for the chronically ill and dying remains problematic. Unique barriers present special challenges to a meaningful discussion of and subsequent strategies for addressing these issues in the context of increasingly scarce resources.

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)

Fragile states and developing countries increasingly contract out health services to non-state providers (NSPs) (such as non-governmental organisations, voluntary sector and private sector). The paper identifies ethical issues when contracts involve devolution of health services to NSPs and proposes procedures to prevent or resolve these ethical dilemmas. Ethical issues were identified by examining processes of contracting out. Health needs could be used to select areas to be contracted out and to identify service needs. Health (...) needs comprise “disease-burden-related needs”, “health-service needs”, and “urgency of health-service needs”. The mix of services should include an analysis of cost-effectiveness. NSPs should be selected fairly, without bias, and conflicts of interest during their work must be avoided. The population’s views must be respected and accountability structures established. Devolved health services should ensure equity of access to healthcare. The services ought to be sustainable and evaluated objectively. Of these issues, conflicts of interest among NSPs and sustainability of health services have not attracted attention in the literature on ethics of health policy. Fair procedures could address these ethical issues—for example, public consultation on issues; decisions based on the public consultation and made on evidence; principles of decisions stated and reasonable; decisions given adequate publicity; a mechanism established to challenge decisions; assurance that mechanisms meet the above conditions; and regular review of the policies. These procedures are complemented by improving self-governance of NSPs, countries’ development of guidelines for devolving health services, and measures to educate the public of the client countries on these issues. (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)

The British National Health Service (BNHS) was founded, to quote Minister of Health Aneurin Bevan, to ‘universalise the best’. Over time, however, financial constraints forced the BNHS to turn to incrementalist budgeting, to rationalise care and to ask its practitioners to act as gatekeepers. Seeking a way to ration scarce tertiary care resources, BNHS gatekeepers began to use chronological age as a rationing criterion. Age-rationing became the ‘done thing’ without explicit policy directives and in a manner largely invisible (...) to patients, to Parliament, and to the public. The invisibility of the practice, however, violates the publicity principle that John Rawls and other philosophers believe essential to fairness. BNHS invisible age-rationing practices are thus a test case of the principle that fairness presupposes publicity; they raise the question: is it possible to preserve equitability in a system that uses non-public criteria to allocate scarce resources? To seek an answer, published data on access to end-stage renal disease (ESRD) treatment in Britain and the European Community (EC) are analysed. Among the findings are: that BNHS age-rationing acts as an excuse for denying care to those most likely to need ESRD treatment; and is, moreover, arbitrary and inequitable. It is further argued that no age-rationing policy can sustain visibility, and that, if the BNHS is to be fair to its patients, it must reform its present age-rationing practices, replacing them by a publicly visible, outcome-based rationing policy that rations either in terms of QALYs or triage categories. (shrink)

Background Self-binding directives (SBDs) are psychiatric advance directives that include the possibility for service users to consent in advance to compulsory care in future mental health crises. Legal provisions for SBDs exist in the Netherlands since 2008 and were updated in 2020. While ethicists and legal scholars have identified several benefits and risks of SBDs, few data on stakeholder perspectives on SBDs are available. Aims The aim of the study was to identify opportunities and challenges of SBDs perceived by (...) stakeholders who have personal or professional experience with legally enforceable SBDs. Methods Data collection was carried out in the Netherlands from February 2020 to October 2021 by means of semi-structured interviews. Participants were selected through purposive sampling and snowball methods. Interviews were conducted with mental health service users (n = 7), professionals (n = 13), and an expert on SBD policy (n = 1), resulting in a total number of 21 interviews. The data were analyzed thematically. Results Perceived benefits of SBDs included increased autonomy, improvement of the therapeutic relationship, possibility of early intervention and prevention of harm, prevention of compulsory care, reduction of the duration of compulsory care and recovery, mitigation of negative experiences around compulsory care, and guidance for professionals in providing compulsory care. Perceived risks included infeasibility of SBD instructions, difficulty in decision-making around SBD activation, limited accessibility of SBDs, disappointment of service users due to non-compliance with SBDs, and limited evaluation and updating of SBD content. Barriers to SBD completion included lack of knowledge of SBDs among professionals, lack of motivation or insight among service users, and lack of professional support for SBD completion. Facilitators of SBD completion and activation included support for SBD completion, involvement of relatives and peer experts, specification of SBD content, and evaluation of compulsory care and SBD content. The new legal framework was regarded as having both positive and negative effects on SBD implementation. Conclusions Stakeholders who have personal or professional experience with legally enforceable SBDs perceive SBDs as having important benefits and tend not to articulate the fundamental ethical concerns about SBDs which can be found in the ethics and legal literature. Instead, they perceive ethical and practical challenges that can be addressed through the implementation of suitable safeguards. (shrink)

Ethical perspectives on regional, rural, and remote healthcare often, understandably and importantly, focus on inequities in access to services. In this commentary, we take the opportunity to examine the implications of normalizing metrocentric views, values, knowledge, and orientations, evidenced by the recent (2022) New South Wales inquiry into health outcomes and access to hospital and health services in regional, rural and remote New South Wales, for contemporary rural governance and justice debates. To do this, we draw (...) on the feminist inspired approach to rural health ethics involving analysis of power relationships developed by Simpson and McDonald and related ideas from critical health sociology. In presenting this analysis, we extend contemporary thought about spatial health inequities and structural violence. (shrink)

Many countries are experimenting with planned (or quasi-) markets to discover if they can efficiently deliver health care in keeping with societal objectives. This paper examines the information requirements of this approach. Information is necessary in order to compare the performance of providers, to support billing, and to monitor access to care. It should be accurate, unambiguous, and resistant to manipulation. We draw on a project to find out how information on hospitalisation could be used in contracting in the (...) British National Health Service. We conclude that the existing British system fails to provide robust measures of how many patients are treated, for what conditions, and with what treatments. We identify some promising remedies, others that are more difficult, and some which may be impossible to implement in any planned market, given the uncertainty of clinical practice. (shrink)

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 Health Service (...) , and ignores our rights and duties as its members, explored here. Alternative forms of community consent should be actively pursued. (shrink)

How should medical services be distributed within society? Who should pay for them? Is it right that large amounts should be spent on sophisticated technology and expensive operations, or would the resources be better employed in, for instance, less costly preventive measures? These and others are the questions addreses in this book. Norman Daniels examines some of the dilemmas thrown up by conflicting demands for medical attention, and goes on to advance a theory of justice in the distribution of (...) health care. The central argument is that health care, both preventive and acute, has a crucial effect on equality of opportunity, and that a principle guaranteeing equality of opportunity must underly the distribution of health-care services. Access to care, preventive measures, treatment of the elderly, and the obligations of doctors and medical administrations are fully discussed, and the theory is shown to underwrite various practical policies in the area. (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)

To practise ‘fairly and justly’ a clinician must balance the needs of both the many and the few: the individual patient in front of them, and the many unseen patients in the waiting room, and in the county. They must consider the immediate clinical needs of those in the present, and how their actions will impact on future patients. The good medical practice guidance ‘Make the care of your patient your first concern’ provides no guidance on how doctors should act (...) when they care for multiple patients with conflicting needs. Moreover, conflicting needs extend far past simply those between different patients. At an organisational level, financial obligations must be balanced with clinical ones; the system must support those who work within it in a variety of roles; and, finally, in order for a healthcare service to be sustainable, the demands of current and future generations must be balanced.The central problem, we propose, is that there is no shared philosophical framework on which the provision of care or the development of health policy is based, nor is there a practical, fair and transparent process to ensure that the service is equipped to deal justly with new challenges as they emerge. Many philosophers have grappled with constructing a set of principles which would lead to a ‘good’ society which is just to different users; prominent among them is Rawls.Four important principles can be derived using a Rawlsian approach: equity of access, distributive justice, sustainability and openness. However, Rawls’ approach is sometimes considered too abstract to be applied readily to policymaking; it does not provide clear guidance for how individuals working within existing institutions can enact the principles of justice. We therefore combine the principles derived from Rawls with Scanlonian contractualism: by demanding that decisions are made in a way which cannot be ‘reasonably rejected’ by different stakeholders, we ensure that conflicting needs are considered robustly.We demonstrate how embedding this framework would ensure just policies and fair practice. We illustrate this by using examples of how it would help prevent injustice among different socioeconomic groups, prevent intergenerational injustice and prevent injustice in a crisis, for example, as we respond to new challenges such as COVID-19.Attempts to help individual doctors practise fairly and justly throughout their professional lives are best focused at an institutional or systemic level. We propose a practical framework: combining Scanlonian contractualism with a Rawlsian approach. Adopting this framework would equip the workforce and population to contribute to fair policymaking, and would ultimately result in a healthcare system whose practice and policies—at their core—were just. (shrink)

Clinical ethics support services are developing in Europe. They will be most useful if they are designed to match the ethical concerns of clinicians. We conducted a cross-sectional mailed survey on random samples of general physicians in Norway, Switzerland, Italy, and the UK, to assess their access to different types of ethics support services, and to describe what makes them more likely to have used available ethics support. Respondents reported access to formal ethics support services such as (...) clinical ethics committees (23%), consultation in individual cases (17.6%), and individual ethicists (8.8%), but also to other kinds of less formal ethics support (23.6%). Access to formal ethics support services was associated with work in urban hospitals. Informal ethics resources were more evenly distributed. Although most respondents (81%) reported that they would find help useful in facing ethical difficulties, they reported having used the available services infrequently (14%). Physicians with greater confidence in their knowledge of ethics (P = 0.001), or who had had ethics courses in medical school (P = 0.006), were more likely to have used available services. Access to help in facing ethical difficulties among general physicians in the surveyed countries is provided by a mix of official ethics support services and other resources. Developing ethics support services may benefit from integration of informal services. Development of ethics education in medical school curricula could lead to improved physicians sensititity to ethical difficulties and greater use of ethics support services. Such support services may also need to be more proactive in making their help available. (shrink)

Pregnancy care is chargeable for migrants who do not have indefinite leave to remain in the UK. Women who are not ‘ordinarily resident’, including prospective asylum applicants, some refused asylum-seekers, unidentified victims of trafficking and undocumented people are required to pay substantial charges in order to access antenatal, intrapartum and postnatal services as well as abortion care within the National Health Service. In this paper, we consider the ethical issues generated by the exclusion of pregnancy care from the (...) raft of services which are free to all. We argue that charging for pregnancy care amounts to sex discrimination, since without pregnancy care, sex may pose a barrier to good health. We also argue that charging for pregnancy care violates bodily autonomy, entrenches the sex asymmetry of sexual responsibility, centres the male body and produces health risks for women and neonates. We explore some of the ideological motivations for making maternity care chargeable, and suggest that its exclusion responds to xenophobic populism. We recommend that pregnancy care always be free regardless of citizenship or residence status, and briefly explore how these arguments bear on the broader moral case against chargeable healthcare for migrants. (shrink)

A clinical trial on mitochondrial replacement therapy is currently being conducted and if this technique proves effective, National Health Service England will fund MRT through the highly specialised services funding stream. This paper considers whether MRT should be publicly funded by the NHS. Given the current financial pressure the NHS is experiencing, a comprehensive discussion is essential. There is yet to be a thorough discussion on MRT funding, perhaps because this is a small-scale issue and presumed to be (...) covered by the HSS budget. However, the source of funding has not been confirmed due to the trial’s incompletion. Upon its completion, reasoned decisions need to be made over the allocation of scarce NHS resources. It is therefore important to consider the following arguments in advance. Three arguments given against NHS funding of MRT will be evaluated. The first argument against NHS funding examines the HSS overspending its budget in an underfunded NHS, suggesting funding must be carefully reprioritised. Second, the ethical issue of allowing public access to a technique with insufficient evidence behind it will be explored. The final point considers the option of privately funding MRT and how this would affect the treatment’s development. After illustrating the weaknesses of such arguments, it will be concluded that MRT should be funded by the NHS. (shrink)

The number of homebound individuals in the United States is on the rise, causing health-care professionals to expand in-home health services to help meet the increased demand. Due to the prevalence of feelings of isolation and depression in this population, it is imperative that mental health professionals join this effort to increase access to mental health services. Delivering psychotherapy in clients’ homes presents many advantages to these homebound individuals, but there is a dearth of (...) literature addressing how therapists should handle unique ethical issues that arise in this type of setting. This article addresses ethical considerations and guidelines for in-home provision of mental health services. General ethical issues related to home-based psychotherapy include boundaries, confidentiality and privacy, competency, insurance coverage, and autonomy. Issues pertaining to different categories of homebound individuals, including persons with agoraphobia, chronic illnesses, and older adults, are then discussed in turn. Recommendations on how to best manage these issues by applying the American Psychological Association’s, the American Counseling Association’s, and the National Association of Social Workers’ Ethics Codes are provided. (shrink)

Healthcare policy and academic literature have promoted improving the transitional care of young people leaving child and adolescent mental health services. Despite the availability of guidance on good practice, there seems to be no readily accessible, coherent ethical analysis of transition. The ethical principles of non-maleficence, beneficence, justice and respect for autonomy can be used to justify the need for further enquiry into the ethical pros and cons of this drive to improve transitional care. The objective of this (...) systematic review was therefore to systematically search for existing ethical literature on child- to adult-orientated health service transitions and to critically appraise and collate the literature, whether empirical or normative. A wide range of bioethics, biomedical and legal databases, grey literature and bioethics journals were searched. Ancestral and forward searches of identified papers were undertaken. Key words related to transition, adolescence and young adulthood, ethics, law and health. The timeframe was January 2000 to at least March 2016. Titles, abstracts and, where necessary, full articles were screened and duplicates removed. All included articles were critically appraised and a narrative synthesis produced. Eighty two thousand four hundred eighty one titles were screened, from which 96 abstracts were checked. Forty seven full documents were scrutinised, leading to inclusion of two papers. Ancestral and forward searches yielded four further articles. In total, one commentary, three qualitative empirical studies and two clinical ethics papers were found. All focused on young people with complex care needs and disabilities. The three empirical papers had methodological flaws. The two ethical papers were written from a clinical ethics context rather than using a bioethical format. No literature identified specifically addressed the ethical challenges of balancing the delivery of transitional care to those who need it and the risk of pathologizing transient and self-limited distress and dysfunction, which may be normal during adolescence. There is very little research on ethical aspects of transitional care. Most existing studies come from services for young people with complex care needs and disabilities. There is much scope for improvement in the amount and quality of empirical research and ethical analysis in this area. (shrink)

BackgroundAdverse Childhood Experiences have been associated with long-term physical and mental health conditions, toxic stress levels, developing unstable interpersonal relationships, and substance use disorders due to unresolved childhood adversities.AimsThis study assessed the perspectives of mental health providers regarding their adult patients’ coping with ACEs during COVID-19 in Houston, Texas. Specifically, we explored how individuals with ACEs are coping with the increased stresses of the pandemic, how MHPs may provide therapeutic support for individuals with ACEs during this pandemic, pandemic-related (...) challenges of accessing and utilizing mental health services for individuals with ACEs, and the awareness and treatment of ACEs among MHPs.MethodsTen in-depth semi-structured virtual interviews were conducted with licensed MHPs from November 2021 to April 2022 in Houston, Texas. Interviews were coded and analyzed for emerging themes through an inductive open coding approach to discover insights regarding coping with ACEs during COVID-19.ResultsFour key themes experienced by individuals with ACEs emerged from the MHP interviews: Maladaptive emotional dissonance and coping outlets during the pandemic, Difficulties with social connectedness and significance of social support, Heightened daily life stressors and coping with the ongoing disruption of the pandemic, and Changing interactions with the mental health system. Themes from this study highlighted that resilience, seeking treatment, and strong social support can help develop healthy coping strategies among individuals with ACEs.ConclusionThis study may help inform best clinical practices to develop interventions and policies regarding ACEs such as a resilience-promotion approach that targets all the socio-ecological levels. In addition, findings highlight the synergy of psychotherapeutic and pharmacological management via tele-health modalities, in helping individuals with ACEs continue receiving the care they deserve and need during a persistent pandemic and an uncertain future. (shrink)

This paper reviews the severe visual focus problems of health economists–they have developed a one-sided fixation with equity issues, neglecting the efficiency agenda. The problems of meeting need are not just about access–they will vary with cost and supply. Economists in fact developed a more balanced agenda in the 1970s but have failed to follow it up. The paper defines the triple nationalisation of the National Health Service , and presents evidence that pluralism, using the purchaser/provider split, has (...) become more efficient in long term care, home care and services for people with learning difficulties. Health economics has failed to explore options for using the dynamic forces of choice and competition for improving health services. The paper makes the case for a decision rule that “we should seek the process of health care service supply and development which maximises the delivery of high quality, lower cost user relevant services”. (shrink)

This paper falls into three parts. In the first part I will briefly review the current process of reform that the United Kingdom National Health Service is undergoing. Two fundamental motivations for reform, the desire for increased efficiency and for an increased responsiveness to patients' needs and preferences will be discussed in greater detail. The second part attempts to provide a perspective on the moral debate concerning health care reform by introducing the distinction between ‘civil association’ and ‘enterprise (...) association’ as proposed by the political philosopher Michael Oakeshott. In the final part, this distinction will be used to analyze the moral and political constitution of the National Health Service, in order to establish the relevance and scope of concerns with efficiency and patient and public accountability. A framework within which the current reforms can be assessed is thereby outlined. Keywords: access to health care, civil association, enterprise association, freedom of choice, health care reform, United Kingdom National Health Service CiteULike Connotea Del.icio.us What's this? (shrink)

This chapter contains section titled: I Equality of Resources II Justice in Health Care III Why Universal Access Requires In‐kind Transfers IV Conclusion Acknowledgement.

Watchful waiting is a concept that is traditionally not associated with severe and enduring mental illness. This paper, however, boldly argues that the concept could be used as a ground-breaking and accessible antidote to the perceived inequality experienced by black service users experiencing both mild and severe mental illnesses in England. The novel concepts proposed in this paper are not intended to be consensual, but rather uncompromising to provoke critical thinking in mental health practice. A conceptual framework for watchful (...) waiting in mental health is suggested. (shrink)

Health care in prison and particularly the health care of older prisoners are increasingly important topics due to the growth of the ageing prisoner population. The aim of this paper is to gain insight into the approaches used in the provision of equivalent health care to ageing prisoners and to confront the intuitive definition of equivalent care and the practical and ethical challenges that have been experienced by individuals working in this field. Forty interviews took place with (...) experts working in the prison setting from three Western European countries to discover their views on prison health care. Experts indicated that the provision of equivalent care in prison is difficult mostly due to four factors: variability of care in different prisons, gatekeeper systems, lack of personnel, and delays in providing access. This lack of equivalence can be fixed by allocating adequate budgets and developing standards for health care in prison. (shrink)

The position concerning the mental health of black and minority ethnic women in Britain is closely linked to that of their respective communities in general. Issues concerning inappropriate care and treatment; lack of access to services; and service delivery based on assumptions and stereotypes govern the way in which black women and men experience mental health care and treatment. This article discusses the specific nature of black women's position, within the wider context of black communities’ experience as (...) a whole. While the term ‘black and minority ethnic communities’ covers a range of differing communities, the focus here is on the experiences of women from African, African-Caribbean and Asian communities. In relation to women in these communities, reference is made to issues concerning: (1) older women; (2) women of mixed heritage; (3) women's roles as care-givers; and (4) the position of refugees and asylum seekers. The article also explores and outlines the importance of self-help strategies including, e.g. befriending and counselling and the role of religion and spirituality in enabling many black people to manage their mental distress. (shrink)

“Recognizing that prisons disproportionately confine sick people, with mental illness, substance abuse, HIV disease among other illnesses; and that prisoners are subject to further morbidity and mortality in these institutions, due to lack of access and/or resources for health care, overcrowding, violence, emotional deprivation, and suicide.… condemns the social practice of mass imprisonment.”After decades of steady decline, tuberculosis has emerged as a significant public health threat in the United States. The rising rates of tuberculosis cases, an increasing proportion (...) of which are resistant to standard chemotherapies, are linked to the many scourges threatening our communities: the explosion of poverty, drug use, violence, the HIV epidemic, and the concomitant rise in congregate housing including homeless shelters, residential drug treatment programs and incarceration facilities. Jails and prisons have disproportionately high rates of tuberculosis infection and have been implicated as points of tuberculosis spread and, as such, are a critical point for tuberculosis control interventions. (shrink)

In this book by the award-winning author of Just Healthcare, Norman Daniels develops a comprehensive theory of justice for health that answers three key questions: what is the special moral importance of health? When are health inequalities unjust? How can we meet health needs fairly when we cannot meet them all? Daniels' theory has implications for national and global health policy: can we meet health needs fairly in ageing societies? Or protect health in (...) the workplace while respecting individual liberty? Or meet professional obligations and obligations of justice without conflict? When is an effort to reduce health disparities, or to set priorities in realising a human right to health, fair? What do richer, healthier societies owe poorer, sicker societies? Just Health: Meeting Health Needs Fairly explores the many ways that social justice is good for the health of populations in developed and developing countries. (shrink)

In everyday conversations, people put forward versions of events and provide supporting evidence to build a credible case. In environments where there are potentially competing versions, case-building may take a more systematic format. Specifically, we conducted a rhetorical analysis to consider how in child mental health settings, families work to present a credible ‘doctorable’ reason for attendance. Data consisted of video-recordings of 28 families undergoing mental health assessments. Our findings point to eight rhetorical devices utilised in this environment (...) to build a case. The devices functioned rhetorically to add credibility and authenticate the case being built, which was relevant as the only resource available to families claiming the presence of a mental health difficulty in the child was their spoken words. In other words, the ‘problem’ was something constructed through talk and therefore the kinds of resources used were seminal in decision-making. (shrink)

Modern health care rhetoric promotes choice and individual patient rights as dominant values. Yet we also accept that in any regime constrained by finite resources, difficult choices between patients are inevitable. How can we balance rights to liberty, on the one hand, with equity in the allocation of scarce resources on the other? For example, the duty of health authorities to allocate resources is a duty owed to the community as a whole, rather than to specific individuals. Macro-duties (...) of this nature are founded on the notion of equity and fairness amongst individuals rather than personal liberty. They presume that if hard choices have to be made, they will be resolved according to fair and consistent principles which treat equal cases equally, and unequal cases unequally.In this paper, we argue for greater clarity and candour in the health care rights debate. With this in mind, we discuss (1) private and public rights, (2) negative and positive rights, (3) procedural and substantive rights, (4) sustainable health care rights and (5) the New Zealand booking system for prioritising access to elective services. This system aims to consider: individual need and ability to benefit alongside the resources made available to elective health services in an attempt to give the principles of equity practical effect. We describe a continuum on which the merits of those, sometimes competing, values—liberty and equity—can be evaluated and assessed. (shrink)

This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data from Digital Mental (...) class='Hi'>Health services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users’ expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research in an ethical manner that includes vulnerable young people as research participants. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users’ control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and ‘read more’ options. (shrink)

Health literacy is a contemporary term used in health services, often used to describe individuals requiring additional support to access, understand and implement health service information. It is used as a measure of self‐efficacy in chronic disease models of care such as the nurse navigator service. The aim of the research was to investigate the concept of health literacy in the nurse navigator service, particularly in relation to the defined role objective of person‐centred care. Fairclough's (...) critical discourse analysis was used to analyse the experiential, relational and expressive elements of texts, investigating the hidden truths which are represented in discourse. Texts from a variety of health service micro‐, meso‐ and macro‐hierarchical sources were selected for analysis using the nurse navigator evaluation data set and other associated texts. Health literacy in the nurse navigator service is a technology of government used to increase participation of individuals in their own health and well‐being. The discourse suggests that health literacy responsibilises both individuals and nurses and is discursively formed within a matrix of rational choice. In this context, health literacy contributes to structural vulnerability. (shrink)

In March 2020, the Portuguese Government issued a remarkable regulation by which irregular migrants who had previously started the regularization procedure were temporarily regularized and thus allowed full access to all social benefits, including healthcare. The Portuguese constitutional and legal framework is particularly generous regarding the right to healthcare to irregular migrants. Nevertheless, until now, several practical barriers prevented full access to healthcare services provided by the national health service, even in situations in which it was legally granted. (...) This decision is not only remarkable in light of the fulfilling of migrants’ rights to health, as imposed by international commitments assumed by, but also in view of the fight against COVID-19. The decision is grounded both on human rights and in public health reasons. The paper is divided in two main parts. In the first one, it analyzes national State obligations with regard to healthcare provision to migrants in irregular situation. In the second part, it analyzes the Portuguese solution, using this case study to discuss the possible mechanisms to comply with such obligations. (shrink)

This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data from Digital Mental (...) class='Hi'>Health services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users’ expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research that includes vulnerable young people as research participants in an ethical manner. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users’ control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and ‘read more’ options. (shrink)

Universal access to antiretroviral treatment (ART) in Chad was officially declared in December 2006. This presidential initiative was and is still funded 100% by the country’s budget and external donors’ financial support. Many factors have triggered the spread of AIDS. Some of these factors include the existence of norms and beliefs that create or increase exposure, the low-level education that precludes access to health information, social unrest, and population migration to areas of high economic opportunities and gender-based discrimination. Social (...) forces that influence the distribution of dimensions of well-being and shape risks for infection also determine the persistence of access barriers to ART. The universal access policy is quite revolutionary but should be informed by the systemic barriers to access so as to promote equity. It is not enough to distribute ARVs and provide health services when health systems are poorly organized and managed. Comprehensive access to ART raises many organizational, ethical and policy problems that need to be solved to achieve equity in access. This paper argues that the persistence of access barriers is due to weak health systems and a poor public health leadership. AIDS has challenged health systems in a manner that is essentially different from other health problems. (shrink)