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This commentary responds to the article by Qureishi et al. (Am J Epidemol. XXXX;XXX(XX):XXXX-XXXX)) that criticizes a new proposal for "positive epidemiology." They argue that positive epidemiology as it is being proposed and conducted ignores supra-individual social contextual factors that constrain wellbeing of some individuals more than others, and it could exacerbate inequalities if applied at a population level, among other harms. They offer an alternative approach to defining causal factors that are helpful for wellbeing, and seek to ground their view in human rights and economic justice frameworks. This commentary considers their criticisms of PE and suggests that their alternative as well as all research into positive health and wellbeing would benefit from drawing on the ongoing debates and works in health equity and justice philosophy. A coherent conception of health and wellbeing, the link between health/wellbeing and theories of justice, and the capabilities approach are discussed. The efforts at conducting epidemiology for the causes and distribution of good health and wellbeing grounded in justice is welcomed.
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This commentary discusses the WHO definition of health ageing in terms of functional abilities, and the problem definition and evidence-based public health response framework outlined in the 2015 WHO Report on Ageing and Health. After identifying the neglect of older people in health policy at national and global levels, some data are presented on the majority of COVID-19 deaths being older people. The discussion then focuses on the underlying ethical and analytical framework of functional abilities provided by the Capability Approach. The approach is presented as distinguishing between achievement and capability, the ethical significance of recognising both, and its inclusion of surrounding social conditions from local to global in assessing wellbeing of older people's functional abilities. Measurement of functional abilities, informed by the Capabilities Approach, is stated to be an enormous and crucial task in establishing a global baseline, and making progress in improving the health and wellbeing of older people.
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Envelhecimento Saudável , Humanos , Idoso , Atividades Cotidianas , Envelhecimento , Organização Mundial da Saúde , Nações UnidasRESUMO
This theoretical paper argues for prioritarianism as an ethical underpinning for digital health in contexts of extreme disadvantage. In support of this claim, the paper develops three prioritarian principles for making ethical decisions for digital health programme design, grounded in the normative position that the greater the need (of the marginalised), the stronger the moral claim. The principles are positioned as an alternative view to the prevailing utilitarian approach to digital health, which the paper argues is not sufficient to address the needs of the worst off. As researchers of digital health, we must ensure that the most globally marginalised are not overlooked by overtly technocentric implementation practices. Consequently, the paper concludes by advocating for use of the three principles to support stronger critical reflection on the ethics involved in the design and implementation of digital health programmes.
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Tomada de Decisões , Princípios Morais , Humanos , Justiça SocialRESUMO
BACKGROUND: There is growing awareness in the field of public health that combatting the double burden of malnutrition requires approaches that address its multi-dimensional origin, rather than focusing primarily on the biomedical domain. Current frameworks of malnutrition like the UNICEF conceptual framework, and the Lancet Series 2013 framework have been instrumental in understanding the determinants of malnutrition and developing appropriate interventions. However, these frameworks fail to explicitly address issues of agency, that is, about being able to pursue one's goal. The capability approach as originally developed by Amartya Sen includes agency in the causal chain. Summary and key Messages: In the past 5 years, the International Union of Nutritional Sciences Task Force "Towards a multi-dimensional index for child growth and development" has developed a capability framework for child growth, and conducted empirical research applying this framework. The working group discussed what would be needed to further develop the approach and explained the added value to international organisations and policy makers. We suggest developing an index of advantage that will be a proxy for a child's agency. We hypothesise that such an index will explain much of the variance in studying inequalities in child nutrition and thus call for action to improve this focal point.
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Fenômenos Fisiológicos da Nutrição Infantil , Gráficos de Crescimento , Desnutrição/epidemiologia , Hipernutrição/epidemiologia , Adulto , Bangladesh/epidemiologia , Criança , Desenvolvimento Infantil , Pré-Escolar , Países em Desenvolvimento , Feminino , Transtornos da Nutrição Fetal/epidemiologia , Humanos , Agências Internacionais , Fenômenos Fisiológicos da Nutrição Materna , Estado Nutricional , Herança Paterna , Gravidez , Fatores Socioeconômicos , Tanzânia/epidemiologiaRESUMO
Gerontologists have proposed different concepts for ageing well such as 'successful ageing', 'active ageing', and 'healthy ageing'. These conceptions are primarily focused on maintaining health and preventing disease. But they also raise the questions: what is a good life in old age and how can it be achieved? While medical in origin, these concepts and strategies for ageing well also contain ethical advice for individuals and societies on how to act regarding ageing and old age. This connection between gerontology and ethics is overlooked by both schools of thought. We thus develop this research programme for a systematic geroethics in four steps. First, we analyze 'successful ageing' as put forward by Rowe and Kahn as a paradigmatic example of a gerontological conception of ageing well. Then, in a second step, we move from criticisms within gerontology to an ethical perspective; in particular, we want to clarify the problem of the claim of universal validity of conceptions of the good life. In a third constructive step, we explain how the 'capabilities approach' could be applied in this context as a normative foundation for the implicit normative assumptions of gerontological conceptions of ageing well, such as a particular choice of functionings, the ethical relevance of human agency, and the resulting claims of individuals towards society. Finally, using a concept developed by the German philosopher Ursula Wolf, we systematically develop the different aspects of the connection between ageing well and the theory of the good life in their full complexity and show their interconnectedness.
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Etarismo/ética , Ética Profissional , Geriatria/tendências , Serviços de Saúde para Idosos/ética , Idoso , Idoso de 80 Anos ou mais , Nível de Saúde , Humanos , Qualidade de VidaRESUMO
Those seeking to improve the well-being of individuals with disabilities worldwide often draw on the idea of human rights. More recently, a variety of international human rights legislation such as the Convention on the Rights of Persons with Disabilities (CRPD) has come into force worldwide. The present article aims to ground human rights of people with disabilities such as those in the CRPD in a theory of social justice called the capabilities approach (CA). This article discusses the reasons for grounding rights in a theory of justice, the links between the CA and human rights, the central concern for disability and individuals with disabilities in the CA, and seven central components of the CA.
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Pessoas com Deficiência/legislação & jurisprudência , Direitos Humanos , Transtornos Mentais/reabilitação , Aptidão , Direitos Humanos/legislação & jurisprudência , Humanos , Justiça Social/ética , Justiça Social/legislação & jurisprudênciaRESUMO
The negotiations for the WHO Pandemic Agreement have brought attention to issues of racism and colonialism in global health. Although the agreement aims to promote global solidarity, it fails to address these deeply embedded problems. This Viewpoint argues that not including the principle of subsidiarity into Article 4 of the agreement as a pragmatic strategy was a missed opportunity to decolonise global health governance and promote global solidarity. Subsidiarity, as a structural principle, empowers local units to make decisions and address issues at their level, fostering collaboration, coordination, and cooperation. By integrating subsidiarity, the agreement could have ensured contextually appropriate responses, empowered local communities, and achieved justice in global health. This paper discusses the elements of subsidiarity-namely, agency and non-abandonment-and highlights the need to strike a balance between them. It also maps the principle of subsidiarity within the Pandemic Agreement, emphasising the importance of creating a practical framework for its implementation. By integrating subsidiarity into the agreement, a just and decolonialised approach to pandemic prevention and response could have been closer to being realised, promoting global solidarity and addressing health inequities.
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COVID-19 , Colonialismo , Saúde Global , Cooperação Internacional , Pandemias , Humanos , COVID-19/epidemiologia , COVID-19/prevenção & controle , Pandemias/prevenção & controle , Racismo/prevenção & controle , Organização Mundial da SaúdeRESUMO
I argue for a conception of health as a person's ability to achieve or exercise a cluster of basic human activities. These basic activities are in turn specified through free-standing ethical reasoning about what constitutes a minimal conception of a human life with equal human dignity in the modern world. I arrive at this conception of health by closely following and modifying Lennart Nordenfelt's theory of health which presents health as the ability to achieve vital goals. Despite its strengths I transform Nordenfelt's argument in order to overcome three significant drawbacks. Nordenfelt makes vital goals relative to each community or context and significantly reflective of personal preferences. By doing so, Nordenfelt's conception of health faces problems with both socially relative concepts of health and subjectively defined wellbeing. Moreover, Nordenfelt does not ever explicitly specify a set of vital goals. The theory of health advanced here replaces Nordenfelt's (seemingly) empty set of preferences and society-relative vital goals with a human species-wide conception of basic vital goals, or 'central human capabilities and functionings'. These central human capabilities come out of the capabilities approach (CA) now familiar in political philosophy and economics, and particularly reflect the work of Martha Nussbaum. As a result, the health of an individual should be understood as the ability to achieve a basic cluster of beings and doings-or having the overarching capability, a meta-capability, to achieve a set of central or vital inter-related capabilities and functionings.
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Objetivos , Comportamentos Relacionados com a Saúde , Promoção da Saúde , Saúde , Teoria Ética , Saúde Global , Política de Saúde , Humanos , Filosofia MédicaRESUMO
In the rapidly evolving landscape of global health issues and policy, surgery has historically been sidelined due to concerns about high cost, complexity and other concerns including quantitatively less surgical disease burden in comparison to infectious disease or other health conditions. Now, in the context of pandemics, climate change, shrinking health budgets and other global health security concerns, the hard-won progress in raising the profile of surgical care is at risk, and a reconceptualisation is needed to maintain its position in global healthcare agendas. We challenge the long-standing ethical frameworks that underlie healthcare priority setting, namely cost-effectiveness analysis and human rights, that have contributed to surgery being sidelined for decades. They incompletely account for improvements to life quality and well-being that are possible through surgical healthcare systems. We argue for the Capabilities Approach as an alternative normative framework because it emphasises the moral importance of supporting every person's abilities to be and to do the things they value. Through this framework, we can produce a more comprehensive conception of healthcare that goes beyond biomedical health, and surgical healthcare would ultimately gain a higher priority in valuation of healthcare and non-healthcare interventions.
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Doenças Transmissíveis , Atenção à Saúde , Humanos , Saúde Global , Qualidade de VidaRESUMO
In the following discussion, we present a quick conceptual history of healthy equity and health justice, some plausible outcomes from the Covid-19 pandemic for the public's understanding of these concepts, and some recent and relevant learnings for realizing equity and justice that could be useful for dental public health and beyond.
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COVID-19 , Justiça Social , Humanos , Pandemias , COVID-19/epidemiologiaRESUMO
BACKGROUND: Person-centred care (PCC) is being internationally recognised as a critical attribute of high-quality healthcare. The International Alliance of Patients Organisations defines PCC as care that is focused and organised around people, rather than disease. Focusing on delivery, we aimed to review and evaluate the evidence from interventions that aimed to deliver PCC for people with serious physical illness and identify models of PCC interventions. METHODS: Systematic review of literature using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched AMED, CINAHL, Cochrane Library, Embase, Medline, PsycINFO, using the following key concepts: patient/person-centred care, family centred care, family based care, individualised care, holistic care, serious illness, chronic illness, long-term conditions from inception to April 2022. Due to heterogeneity of interventions and populations studied, narrative synthesis was conducted. Study quality was appraised using the Joanna Briggs checklist. RESULTS: We screened n=6156 papers. Seventy-two papers (reporting n=55 different studies) were retained in the review. Most of these studies (n=47) were randomised controlled trials. Our search yielded two main types of interventions: (1) studies with self-management components and (2) technology-based interventions. We synthesised findings across these two models:Self-management component: the interventions consisted of training of patients and/or caregivers or staff. Some studies reported that interventions had effect in reduction hospital admissions, improving quality of life and reducing costs of care.Technology-based interventions: consisted of mobile phone, mobile app, tablet/computer and video. Although some interventions showed improvements for self-efficacy, hospitalisations and length of stay, quality of life did not improve across most studies. DISCUSSION: PCC interventions using self-management have some effects in reducing costs of care and improving quality of life. Technology-based interventions improves self-efficacy but has no effect on quality of life. However, very few studies used self-management and technology approaches. Further work is needed to identify how self-management and technology approaches can be used to manage serious illness. PROSPERO REGISTRATION NUMBER: CRD42018108302.
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Telefone Celular , Aplicativos Móveis , Hospitalização , Humanos , Qualidade de Vida , AutocuidadoRESUMO
INTRODUCTION: Person-centred care (PCC) is internationally recognised as a critical component of high-quality healthcare. However, PCC evolved in a few high-income countries and there are limited data exploring this concept across the vast majority of countries which are low- and middle-income. This study aimed to appraise and adapt a PCC model across three serious physical conditions in three middle-income countries and generate an evidence-based framework and recommendations for globally relevant PCC. METHODS: Cross-national, cross-sectional qualitative study. In depth, semistructured interviews conducted with: advanced cancer patients in Jordan (n=50), their caregivers (n=20) and healthcare professionals (HCPs) (n=20); chronic obstructive pulmonary disease patients in South Africa (n=22), their caregivers (n=19) and HCPs (n=22); heart failure patients in Thailand (n=14), their caregivers (n=10) and HCPs (n=12). Data were analysed using framework analysis. Santana et al's PCC model (2018) and Giusti et al's systematic review (2020) were used to construct an a priori coding frame for deductive analysis, with additional inductive coding for coding that did not fit the frame. RESULTS: The findings both reveal specific practical actions that contribute towards delivering PCC and highlight new cross-national domains of person-centredness: interdependency and collectivism; bringing care into the home and community; equity and non-discrimination; addressing health and illness within the context of limited resources; and workforce well-being. CONCLUSION: The data suggest that PCC requires particular structural features of the healthcare system to be in place, such as professional education in PCC values and partnerships with community-based workers. These structures may better enable PCC processes, including tailored information sharing and providing genuine opportunities for patients to do the things that matter to them, such as making informed care decisions and sustaining social relationships. PCC must also accommodate a collectivist perspective and support the well-being of the workforce.
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Cuidadores , Assistência Centrada no Paciente , Estudos Transversais , Atenção à Saúde , Humanos , Pesquisa QualitativaAssuntos
Saúde Global , Justiça Social , Humanos , Cooperação Internacional , Responsabilidade SocialRESUMO
Situating medical and scientific research within a framework or theory of social justice is long overdue. Attempting to extend principles of research ethics beyond the clinic and lab to other affected people or consequences tolerates or obfuscates injustice. While it must be done, the timescales, methodologies, and commitment to real-world impact are quite different in research ethics versus political philosophy.
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Filosofia , Justiça Social , Ética em Pesquisa , HumanosRESUMO
For advocates of the rights of persons with disabilities, particularly persons with mental disabilities, the human right to live in the community as an equal member is seen to be central and, often, even as the basis for all other human rights. Yet, despite its articulation in human rights law in the Convention on the Rights of People with Disabilities (CRPD), foundational issues about the right remain undertheorized and unclear. This paper brings to bear the capabilities approach, a normative framework about human well-being, social development and social justice, to this central concern in disability rights, mental health ethics, and international human rights law: protecting and respecting a person's right to live in a community as an equal. We argue that this human and moral right is best conceptualized as a capability to live in the community as an equal member. The capabilities approach provides this capability with a strong ethical framework and conceptual resources to guide reasoning and its practical realization.
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Pessoas com Deficiência/legislação & jurisprudência , Direitos Humanos/ética , Direitos Humanos/legislação & jurisprudência , Vida Independente/ética , Vida Independente/legislação & jurisprudência , Justiça Social , HumanosRESUMO
INTRODUCTION: Person-centred care has become internationally recognised as a critical attribute of high-quality healthcare. However, the concept has been criticised for being poorly theorised and operationalised. Serious illness is especially aligned with the need for person-centredness, usually necessitating involvement of significant others, management of clinical uncertainty, high-quality communication and joint decision-making to deliver care concordant with patient preferences. This review aimed to identify and appraise the empirical evidence underpinning conceptualisations of 'person-centredness' for serious illness. METHODS: Search strategy conducted in May 2020. Databases: CINAHL, Embase, PubMed, Ovid Global Health, MEDLINE and PsycINFO. Free text search terms related to (1) person-centredness, (2) serious illness and (3) concept/practice. Tabulation, textual description and narrative synthesis were performed, and quality appraisal conducted using QualSyst tools. Santana et al's person-centred care model (2018) was used to structure analysis. RESULTS: PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow data: n=12,446 studies screened by title/abstract, n=144 full articles assessed for eligibility, n=18 studies retained. All studies (n=18) are from high-income countries, and are largely of high quality (median score 0.82). The findings suggest that person-centred care encompasses the patient and family being respected, given complete information, involved in decision-making and supported in their physical, psychological, social and existential needs. The studies highlight the importance of involving and supporting family/friends, promoting continuation of normality and self-identity, and structuring service organisation to enable care continuity. CONCLUSION: Person-centred healthcare must value the social network of patients, promote quality of life and reform structurally to improve patients' experience interacting with the healthcare system. Staff must be supported to flexibly adapt skills, communication, routines or environments for individual patients. There remains a need for primary data investigating the meaning and practice of PCC in a greater diversity of diagnostic groups and settings, and a need to ground potential components of PCC within broader universal values and ethical theory.