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Abstract: Abstract Developing an instrument with the capability approach can be challenging, since the capability concept of Sen is ambiguous concerning the burdens that people experience whilst achieving their capabilities. A solution is to develop instruments with a comprehensive concept of capability, such as the concept of ‘option-freedom’. This study aims to develop a theoretical framework for instrument development with the concept of option-freedom. A best-fit framework synthesis was conducted with seven qualitative papers by one researcher. Two researchers supported the synthesis by discussing interim results during the synthesis. A priori concepts of option-freedom were used to deductively code against. Themes and subthemes were developed inductively when data did not match a priori themes. Seven paper were identified that fulfilled the eligibility criteria. Four themes emerged from the synthesis. (1) Option Wellbeing represents a range of options that need to be satisfied for individuals to experience wellbeing. (2) Self-Realization represents that there are experiences in an individual’s life that have value beyond realizing options. (3) Perceived Access to Options represents the perceived ability of individuals to realize freedoms. (4) Perceived Control represents the experience of having control. Developing an instrument with the proposed framework has two benefits. First, it acknowledges the importance of assessing impediments in realizing capabilities for wellbeing assessment. Secondly, the themes form a broad informational base by including themes related to subjective wellbeing. Future research should study the feasibility of implementing the framework for instrument development. PubDate: 2024-08-19
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Abstract: Abstract Research on justifications has shown their significance in advice-giving, decision-making and children disputes. However, the majority of studies gloss over practical functions of justifications in patient-physician interactions as they are often expected and pursued by patients and in turn, are adopted by physicians to support their stance and authority. This study, through conversation analysis (CA), aims to explore a) what are pragmatic functions of justifications in patient-physician interaction' b) how and when do physicians unfold their justifications for treatment recommendations' c) how do physicians deal with different responses based on their epistemic and deontic domains'. A total of 32 video-recordings between postpartum women and physicians are collected and studied. Four pragmatic functions of justifications drawn upon by physicians are explored: justifications as face-saving, reassurance, risk discussion and clarification-seeking. Despite physicians’ attempts to justify their positions as less challenged by patients, this is not the entire picture as they demonstrate their desire to resolve patients’ concerns and coordinate their viewpoints to achieve the best practice that facilitates patients’ well-being. PubDate: 2024-06-27
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Abstract: Abstract Health technologies such as apps for digital contract tracing [DCT] played a crucial role in containing and combating infections during the COVID-19 pandemic. Their primary function was to prevent the spread of SARS-CoV-2 by consistently generating and disseminating information related to various events such as encounters, vaccinations or infections. While the functionality of DCT has been well researched, the necessity of transparency in the use of DCT and the consent to share sensitive information such as users’ health, vaccination and location status remains unclear. On one hand, DCT enabled the continuous monitoring of various risk factors, including data-based calculations of infection probabilities. On the other hand, digital monitoring of health risks was closely associated with various uncertainties, such as the ambiguous storage of personal data and its potential future misuse, e.g., by tech companies or health authorities. Our contribution aims to retrospectively analyze the COVID-19 pandemic from a post-pandemic perspective and utilize it as a case study for the implementation of new technological measures. We argue that under the condition of voluntary use of DCT, transparency plays a key role in convincing individuals to install health technologies on their mobile devices, keep them activated and consent to the sharing of sensitive data. We support our argument with qualitative data from an expert survey conducted between 2020 and 2021 and analyzed according to the principles of Grounded Theory. PubDate: 2024-06-23
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Abstract: Abstract The inherent normativity of HTA can be conceptualized as a result of normative commitments, a concept that we further specify to encompass moral, epistemological and ontological commitments at play in the practice of HTA. Based on examples from literature, and an analysis of the example of assessing Non-Invasive Prenatal Testing (NIPT), we will show that inevitable normative decisions in conducting an assessment commits the HTA practitioner to moral (regarding what makes a health technology desirable), ontological (regarding which effects of health technology are conceivable), and epistemological (regarding how to obtain reliable information about health technology) norms. This highlights and supports the need for integrating normative analysis and stakeholder participation, providing guidance to HTA practitioners when making normative choices. This will foster a shared understanding between those who conduct, use, or are impacted by assessments regarding what are conceivable and desirable outcomes of using health technology, and how to collect reliable information to assess whether these outcomes are (going to be) realized. It also provides more insight into the implications of different normative choices. PubDate: 2024-06-17 DOI: 10.1007/s10728-024-00487-x
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Abstract: Abstract In this paper we aim to discuss a theoretical explanation for the positive relationship between patients’ knowledge and their trust in healthcare personnel. Our approach is based on John Dewey’s notion of continuity. This notion entails that the individual’s experiences are interpreted as interrelated to each other, and that knowledge is related to future experience, not merely a record of the past. Furthermore, we apply Niklas Luhmann’s theory on trust as a way of reducing complexity and enabling action. Anthony Giddens’ description and analysis of the high modern society provides a frame for discussing the preconditions for patient-healthcare personnel interaction. High modernity is dominated by expert systems and demands trust in these. We conclude that patient knowledge and trust in healthcare personnel is related because both knowledge and trust are future- and action-oriented concepts. The traits of high modernity provides opportunities and challenges as the personnel can and must perform discretion. This discretion must be made in a context where knowledge is considered uncertain and preliminary. PubDate: 2024-06-01 DOI: 10.1007/s10728-023-00467-7
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Abstract: Abstract This study examined variation in medical practitioners’ practice-based conceptions of what it means to be a doctor, based on interviews with 30 clinicians who were also medical educators. Participants included general practitioners, surgeons and physicians (non-surgical specialists). Participants were asked to draw a concept map of ‘being a doctor’, followed by semi-structured interviews using a phenomenographic research design. Three conceptions were identified, varyingly focused on (1) treating patients’ medical problems; (2) maximising patients’ well-being; and (3) maximising community health. Each conception was distinguished by variation in awareness of six underlying dimensions of being a doctor: (1) doctors’ actions; (2) treatment success; (3) patients’ actions; (4) patients’ well-being; (5) community needs; and (6) social justice. Whilst all participants included dimensions 1 and 2 in their described practice, numerous participants did not include dimensions 3 and 4, i.e. did not take the patients’ role and the impact of patients’ psychosocial context into account in their practice. This is concerning, especially amongst medical educators, given the widely acknowledged importance of patient-centred care in medical practice. Similarly, only some of the participants considered community health needs and felt a broader social responsibility beyond their responsibility to individual patients. These findings highlight aspects of the medical profession that need to be further emphasised in medical training and continuing professional development. PubDate: 2024-05-23 DOI: 10.1007/s10728-024-00484-0
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Abstract: Abstract Based on a qualitative study, this paper explores how United States public health professionals view and think about the existing U.S. healthcare system, while also allowing these study participants to imagine new ways of structuring and practicing public health. Using semi-structured qualitative interviews, I show how public health professionals engage with the concept of “the social” and their personal experiences with public health to question the status quo. By giving public health professionals space in which to imagine changes and different ways of practicing public health, I demonstrate the effectiveness of imagination as a capacity that public health professionals possess to take the lead in creating the changes they hope for. PubDate: 2024-05-20 DOI: 10.1007/s10728-024-00482-2
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Abstract: Abstract Decentralized clinical trials (DCTs) have the potential to advance the conduct of clinical trials, but raise several ethical issues, including obtaining valid informed consent. The debate on the ethical issues resulting from digitalization is predominantly focused on direct risks relating to for example data protection, safety, and data quality. We submit however, that a broader view on ethical aspects of DCTs is needed to touch upon the new challenges that come with the DCT practice. Digitalization has impacts that go beyond its direct purposes, by shaping behaviors, experiences, social relations, and values. We examine four elements of the informed consent procedure that are affected by DCTs, while taking these soft impacts of technologies into account: (i) informing participants and testing understanding, (ii) freedoms in relation to responsibilities and burdens, (iii) trust in participant-researcher relations, and (iv) impacts on the concept of privacy. Our analysis reveals that a broad view is key for optimal conduct of DCTs. In addition, it provides insight into the ethical impacts of DCTs on informed consent. Technologies such as DCTs potentially have profound impacts which are not immediately addressed by the existing regulatory frameworks, but nonetheless important to recognize. These findings can guide future practices of DCTs to foster the important values of clinical research in this novel approach for conducting clinical trials. PubDate: 2024-05-19 DOI: 10.1007/s10728-024-00483-1
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Abstract: Abstract As COVID-19 keeps impacting the world, its impact is felt differently by people of different sexes and genders. International guidelines and research on gender inequalities and women’s rights during the pandemic have been published. However, data from Taiwan is lacking. This study aims to fill the gap to increase our knowledge regarding this issue and provide policy recommendations. This study is part of a more extensive project in response to the fourth state report concerning the implementation of the Convention on the Elimination of All Forms of Discrimination against Women in Taiwan in 2022. We have drawn on the guidelines and documents published by the United Nations human rights bodies, conducted interviews with advocacy and professional practitioners, and hosted a study group comprising students and teachers from the National Taiwan University College of Public Health to supplement the interview data. The data were analyzed thematically. The results include five themes: (1) particular health risks to carers (primarily women); (2) COVID-related measures’ impact on women’s health and health behaviors; (3) highly gendered psychological maladjustment; (4) increase in gender-based violence and domestic violence; and (5) mental health inequities and intersectionality. The study has global implications for societies of similar sociopolitical contexts and developmental statuses. To truly live up to the standard of CEDAW and other international human rights principles, we ask that central and local government be more aware of these lived experiences and adjust their policies accordingly, accounting for gender sensitivity. PubDate: 2024-03-01 DOI: 10.1007/s10728-023-00463-x
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Abstract: Abstract Nudges are means to influence the will formation of people to make specific choices more likely. My focus is on nudges that are supposed to improve the health condition of individuals and populations over and above the direct prevention of disease. I point out epistemic and moral problems with these types of nudges, which lead to my conclusion that health-enhancing nudges fail. They fail because we cannot know which choices enhance individual health—properly understood in a holistic way—and because health-enhancing nudges are often themselves bad for our health. They can be bad for our health because they assume inferior agency in their targets and accordingly regularly lead to appropriate resentment and anger—strong emotions which go along with an increased risk of health impairments. Briefly, health-enhancing nudges fail because they are based on persistent ignorance and on a presumptuous attitude. PubDate: 2024-03-01 DOI: 10.1007/s10728-023-00459-7
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Abstract: Abstract The General Medical Council (GMC) instructs doctors to act ‘reasonably’ in obtaining consent from patients. However, the GMC does not explain what it means to be reasonable: it is left to doctors to figure out the substance of this instruction. The GMC relies on the Supreme Court’s judgment in Montgomery v Lanarkshire Health Board; and it can be assumed that the judges’ idea of reasonability is adopted. The aim of this paper is to flesh out this idea of reasonability. This idea is commonly personified as the audience that has to be satisfied by the doctor’s justification for offering, or withholding, certain treatments and related information. In case law, this audience shifted from a reasonable doctor to a ‘reasonable person in the patient’s position’; and Montgomery expands the audience to include ‘particular’ patients, too. Senior judges have clarified that the reasonable person is a normative ideal, and not a sociological construct; but they do not set out the characteristics of this ideal. John Rawls has conceived the reasonable person-ideal as one that pursues fair terms of co-operation with other members of society. An alternative ideal can be inferred from the feminist ethic of care. However, the reasonable patient from Montgomery does not align with either theoretical ideal; but, instead, is an entirely rational being. Such a conception conflicts with both real-life constraints on rationality and the doctor’s duty to care for the patient, and it challenges the practice of medicine. PubDate: 2024-03-01 DOI: 10.1007/s10728-023-00466-8
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Abstract: Abstract Population policy has taken two divergent trajectories. In the developing part of the world, controlling population growth has been a major tune of the debate more than a half-century ago. In the more developed part of the world, an inverse pattern results in the discussion over the facilitation of population growth. The ethical debates on population policy have primarily focused on the former and ignored the latter. This paper proposes a more comprehensive account that justifies states’ population policy interventions. We first consider the reasons that support pro-natalist policies to enhance fertility rates and argue that these policies are ethically problematic. We then establish an ethics of population policy grounded on account of self-sustaining the body politic, which consists of four criteria: survival, replacement, accountability, and solidarity. We discuss the implications of this account regarding birth-control and pro-natalist policies, as well as non-procreative policies such as immigration, adoption, and unintended baby-saving strategies. PubDate: 2024-03-01 DOI: 10.1007/s10728-023-00462-y
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Abstract: Abstract The term ‘environment’ is not uniformly defined in the public health sciences, which causes crucial inconsistencies in research, health policy, and practice. As we shall indicate, this is somewhat entangled with diverging pathogenic and salutogenic perspectives (research and policy priorities) concerning environmental health. We emphasise two distinct concepts of environment in use by the World Health Organisation. One significant way these concepts differ concerns whether the social environment is included. Divergence on this matter has profound consequences for the understanding of health and disease, for measures derived from that understanding targeting health promotion and disease prevention, and consequently, for epistemic structures and concept development in scientific practice. We hope to improve the given situation in public health by uncovering these differences and by developing a fruitful way of thinking about environment. Firstly, we side with the salutogenic conception of environment as a health resource (as well as a source of health risks). Secondly, we subdivide the concept of environment into four health-oriented environmental categories (viz., natural, built-material, socio-cultural, and psychosocial) and we link these with other theoretical notions proposed in the health sciences literature. Thirdly, we propose that in public health ‘environment’ should be understood as consisting of all extrinsic factors that influence or are influenced by the health, well-being, and development of an individual. Consequently, none of the four categories should be excluded from the concept of environment. We point out the practical relevance and fruitfulness of the conception of environment as a health source and frame this in causal terms, representing individual health environments as causal networks. Throughout, we side with the view that for the design of human health-promoting settings, increased attention and consideration of environmental resources of salutogenic potential is particularly pressing. PubDate: 2024-01-29 DOI: 10.1007/s10728-023-00477-5
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Abstract: Abstract The practical goal of preventing premature death seems uncontroversial. But the term ‘premature death’ is vague with several, sometimes conflicting definitions. This ambiguity results in several conceptions with which not all will agree. Moreover, the normative rationale behind the goal of preventing premature deaths is masked by the operational definition of existing measures. In this article, we argue that ‘premature death’ should be recognized as a normative concept. We propose that normative theories should be used to justify measures of premature death to provide them with normative validity and public legitimacy. PubDate: 2024-01-26 DOI: 10.1007/s10728-023-00471-x
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Abstract: Abstract Evidence shows that during birth women frequently experience unconsented care, coercion, and a loss of autonomy. For many countries, this contradicts both the law and medical ethics guidelines, which emphasize that competent and fully informed women’s autonomy must always be respected. To better understand this discordance, we empirically describe perinatal maternity care providers’ and women’s moral deliberation surrounding coercive measures during birth. Data were obtained from 1-on-1 interviews with providers (N = 15) and women (N = 14), and a survey of women (N = 118). Analyses focused on an in-depth exploration of responses to a question on the permissibility of coercion in birth whose wording was borrowed from a Swiss medical-ethical guideline. Reasons for and against a principle permissibility of coercive measures in birth were grouped into clusters of reasons to build a coherent explanatory framework. Factors considered morally relevant when deliberating on coercion included women’s decisional capacity, beneficence/non-maleficence, authority through knowledge on the part of providers, flaws of the medical system, or the imperative to protect the most vulnerable. Also, we identified various misconceptions, such as the conviction that a pathological birth can justify coercion or that fetal rights can justifiably infringe on women’s autonomy. Information and education on the issue of coercion in birth are urgently needed to enable women to fully exercise their reproductive autonomy, to prevent long-term adverse health outcomes of women and children, and to reconcile the medical vigilance which has lead to a reduction of perinatal morbidity and mortality with women’s enfranchisement in their own care. PubDate: 2024-01-23 DOI: 10.1007/s10728-024-00480-4
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Abstract: Abstract The crisis resilience of vital social systems is currently the target of constant development efforts in Finland, as their drifting into crisis would weaken societies’ functional abilities, safety, and security. This is also the case regarding the Finnish health care system. In an attempt to move beyond existing frameworks of crisis imagination, this article takes an unconventional stance by elucidating endogenous crisis dynamics present in the Finnish health care system. Delphi process was conducted for top experts in Finnish health care and crisis management. With a dissensus-seeking orientation, our aim was to fertilize disagreements among panelists to reveal key vulnerabilities in the health system. Despite our efforts to evoke dissensus, the panelists ended up generating a consensus that aims to protect the underlying assumptions of the health system’s knowledge structure. Through inductive analysis of expert discourses, the data was analyzed through our research question “what constitutes a crisis-proof health system and a crisis-prone health system”. What is framed as a strength of the system by our panelists, namely the ability to maintain legitimacy, improve efficiency, and guarantee continuity, can still have questionable implications that are left ungrasped. A system’s theory approach illustrates how such effects can develop and escalate beyond the reach of social interventions, and thus be predisposed to cause objectionable yet concealed social crises. The discussion illustrates how these endogenous crisis dynamics could be seen to materialize in real-life cases. PubDate: 2024-01-22 DOI: 10.1007/s10728-023-00479-3
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Abstract: Abstract In health care, the provision of pertinent information to patients is not just a moral imperative but also a legal obligation, often articulated through the lens of obtaining informed consent. Codes of medical ethics and many national laws mandate the disclosure of basic information about diagnosis, prognosis, and treatment alternatives. However, within publicly funded health care systems, other kinds of information might also be important to patients, such as insights into the health care priorities that underlie treatment offers made. While conventional perspectives do not take this as an obligatory part of the information to be shared with patients, perhaps through viewing it as clinically “non-actionable,” we advocate for a paradigm shift. Our proposition diverges from the traditional emphasis on actionability. We contend that honoring patients as equal moral agents necessitates, among other principles, a commitment to honesty. Withholding specific categories of information pertinent to patients’ comprehension of their situation is inherently incompatible with this principle. In this article, we advocate for a recalibration of the burden of proof. Rather than requiring special justifications for adding to the standard set of information items, we suggest that physicians should be able to justify excluding relevant facts about the patient’s situation and the underlying considerations shaping health care professionals’ choices. This perspective prioritizes transparency and empowers patients with a comprehensive understanding, aligning with the ethos of respect for the patient as person. PubDate: 2023-12-30 DOI: 10.1007/s10728-023-00475-7
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Abstract: Abstract ‘Social inclusion’ is the leading ideal in services and care for people with intellectual disabilities in most countries in the Global North. ‘Social inclusion’ can refer simply to full equal rights, but more often it is taken to mean something like ‘community participation’. This narrow version of social inclusion has become so ingrained that it virtually goes unchallenged. The presumption appears to be that there is a clear moral consensus that this narrow understanding of social inclusion is good. However, that moral consensus is not clear in the case of people with profound intellectual and/or multiple disabilities (PIMD), who are not able to express their needs and preferences verbally. Moreover, social inclusion has proven to be difficult to conceptualize and implement for people with PIMD. Therefore, it becomes imperative to ask about the ethical rationale of the narrow understanding of social inclusion. For what reasons do we think social inclusion is good' And do those reasons also apply for people with PIMD' This article addresses these questions by providing an ethical analysis of the ideal of social inclusion for people with PIMD. It discusses four ethical arguments for social inclusion and probes their relevance for people with PIMD. The article argues that none of these arguments fully convince of the value of the narrow understanding of social inclusion for people with PIMD. It ends with advocating for an ethical space for imagining a good life for people with PIMD otherwise. PubDate: 2023-12-11 DOI: 10.1007/s10728-023-00470-y
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Abstract: Abstract Moral distress is a common phenomenon among nurses and is related to the complicated work environments and complex nature of ethical situations in day-to-day nursing practice. Moral distress impacts nurses as well as patient care and the health care system. Few strategies have been identified for instructors to effectively engage with learners when communicating about moral distress. We discuss two key curricular and pedagogical strategies that should be utilized when learning about moral distress: difficult knowledge’ and ‘terror management theory’. Whether it is with new nursing students or experienced nurses, there is necessary learning that needs to occur on moral distress. Difficult knowledge’ and ‘terror management theory’, when implemented, can provide a starting point for both the learner and the instructor to discuss the emotionally difficult and complex topic of moral distress. Knowledge about moral distress has the potential to mitigate its negative effects, therefore it is vital to consider educational strategies to teach nurses about this complex phenomenon. PubDate: 2023-09-04 DOI: 10.1007/s10728-023-00468-6