Barriers to healthcare access for children with congenital heart disease in eight Latin American countries.

BACKGROUND: Mortality from congenital heart disease has decreased considerably in the last two decades due to improvements in overall health care. However, there are barriers to access to healthcare in Latin America for this population, which could be related to factors such as healthcare system, policies, resources, geographic, cultural, educational, and psychological factors. Understanding the barriers to access to care is of paramount importance for the design and implementation of policies and facilitate the provision of care. AIM: The aim of the study was to investigate the perception of barriers to access to health care on parents/guardians of children with congenital heart disease in selected Latin American countries. METHODS: A descriptive, cross-sectional study, in which parents/guardians or primary caregivers of children with congenital heart disease was recruited to participate and surveyed. Once the informed consent process had been completed, a set of paper-based scales was used to collect data, namely socioeconomic and demographic information, the Barriers to Care for Children with Special Health Care Needs Questionnaire, and the General Health Questionnaire. RESULTS: In total, 286 participants completed the surveys, with an average age of 34.81 years and 73.4% being female. Mean score of overall barriers was 54.45 (minimum score 39, maximum score 195, higher scores show greater perception of barriers). In Mexico, the parents/guardians of children perceived fewer barriers to access (46.69), while Peru is the country where the most barriers were perceived (69.91). Nonpoor participants showed higher overall barrier perception scores (57.34) than poor participants (52.58). The regression analysis demonstrated the overall perception of barriers was positively associated with individual and social factors, such as educational level, contract status, household monthly income, and psychological well-being and with the country of the participants. CONCLUSIONS: Multiple factors are associated with the perception of barriers to accessing health care for children with congenital heart disease, including socioeconomic status, expectations, psychological well-being, and structural factors.

Bioethics and COVID-19: Considering the Social Determinants of Health.

In this paper, we focus on a novel bioethical approach concerning the ethical implications of the Social Determinants of Health (SDs) in the time of COVID-19, offering a fresh interpretation of our agency and responsibility in the current pandemic era. Our interpretation is grounded on the idea that our health basically depends on factors that go beyond our organism. In this sense, we stress the radical importance of circumstances to ethically assess an action, in the current pandemic context. Moreover, due the centrality of the SDs in our bioethical assessments-that implies that our health does not exclusively depend on our choices, behaviors, and lifestyle-we can affirm that we are not entirely responsible for our wellness or diseases. As health depends on economic, social, cultural, and environmental factors, we argue that the analysis of personal responsibility facing personal health status should receive further consideration. In this sense, following the "social connection model," we stress the importance of the concept of "shared responsibility" in collective decisions: if we make many decisions collectively, we are also collectively responsible of these decisions. Furthermore, to responsibly tackle the social inequalities that are the underlying cause of disparities in health outcomes, we propose two main strategies based on the Capability Approach: 1. empowering the individuals, especially the most vulnerable ones; and 2. designing preventive policies and interventions that provides an opportunity to address the disparities moving forward. This will help us going beyond the "individualistic medical ethics paradigm" and integrating our concept of health with social factors (e.g., the SDs), based on a more relational and interdependent anthropological thought.

Predictors of COVID-19 vaccine hesitancy in Chad: A cross-sectional study.

Vaccination against the COVID-19 virus is currently the best option to combat the SARS-CoV-2 pandemic worldwide. However, in addition to logistical and economic barriers, hesitancy to be vaccinated threatens to jeopardize efforts to contain the disease. An increasing number of people in Africa are delaying or rejecting recommended vaccines. Since their launch, COVID-19 vaccines have frequently faced rejection worldwide. In this study, we interviewed 5,174 participants from Chad that were representative of the general population, on their perception of COVID-19 vaccines. The survey was conducted from April to May 2021, before the rollout of the COVID-19 vaccination. We found that 47.9% of respondents were willing to receive the COVID-19 vaccine, 29.8% were undecided and 22.3% would not accept the vaccine. We found that urban residents were much more likely to refuse the vaccine than rural residents. We also observed that distrust of COVID-19 vaccines and mistaken beliefs played a crucial role in the reluctance to be vaccinated. Hesitancy to vaccinate against COVID-19 was strongly associated with lack of knowledge, and acceptance of vaccination was primarily associated with fear of the disease. Finally, we identified population profiles among the undecided and the refractors, which will help in developing strategies to combat COVID-19 vaccine resistance.

Poverty, quality of life and psychological wellbeing in adults with congenital heart disease in Chile.

The objective of this study was to assess the quality of life and psychological wellbeing of adults with congenital heart disease (CHD) in Chile, and to identify other associated factors. The study enrolled 68 patients aged between 18 and 72 (median 29), 35 being females. They completed a questionnaire, which included a quality of life assessment tool (the Medical Outcome Study 36-Item Short Form Health Survey), a number of psychological scales (the General Health Questionnaire, the Basic Psychological Needs Scales and the Beck Hopelessness Scale), a socioeconomic survey, and some clinical data. CHD patients reported worse scores in those scales assessing physical dimensions of quality of life (physical function (70.5), physical role functioning (64), vitality (65.3)), and general quality of life (58.6), than in emotional or social dimensions. Female gender was associated with lower scores in physical function (59.12 versus 82.66; p<0.01) and physical role functioning (53.68 versus 75; p<0.05); poverty was associated with worse results in physical function (61.92 versus 82.96; p<0.01), role physical (53.21 versus 79.63; p<0.01), vitality (60.89 versus 71.67; p<0.05), social role functioning (70.19 versus 82.87; p<0.05) and bodily pain (65.77 versus 81.2; p<0.05). Furthermore, we found that psychological scales had an association with quality of life, but clinical variables did not show significant correlations to any dimension. Poverty has an impact on the quality of life of CHD patients. This population only has a decrease in the quality of life physical dimensions, suggesting that quality of life depends on many different factors.

Health assessment and the capability approach.

Health has an important role in the achievement of a good quality of life. Many public policies intended to enhance individual and population health. Amartya Sen's Capability Approach (CA) offers a framework to assess well-being, as well as interventions seeking to increase it. There are, however, important practical challenges that must be faced before applying CA to concrete situations, such as health. One of these challenges is defining whether it is functioning or a capability that is the feature to be assessed. Moreover, some aspects of freedom that are relevant for CA are frequently neglected, such as agency. These aspects must be considered when performing a health assessment using the CA as a framework. A health assessment using the CA as a framework should include indicators based on the achieved dimension (health functioning), resources and conversion factors (health capability), and freedom to achieve (agency).

Towards a broader understanding of agency in biomedical ethics.

With advances in medical science, the concept of agency has received increasing attention in biomedical ethics. However, most of the ethical discussion around definitions of agency has focused either on patients suffering from mental disorders or on patients receiving cutting-edge medical treatments in developed countries. Very little of the discussion around concepts of agency has focused on the situation of patients suffering from common diseases that affect populations worldwide. Therefore, the most widely-used definitions of agency may be not appropriate to analyse common diseases among large populations. The branch of social sciences known as development studies draw on their own definitions of the term agency that may provide a more applicable and accurate way of referring to common and general cases than the definitions currently used in bioethics. Moreover, the psychological Self-Determination Theory may improve the usefulness of these definitions in common situations. This article explains the characteristics and the shortcomings of current bioethical definitions of agency when they are applied to common medical conditions worldwide. A new, value-based concept of agency, informed by development studies, is proposed as more accurate and useful for biomedical ethics.

Modelos de análisis de casos en ética clínica / Case analysis models in clinical ethics

Los avances de la medicina ocasionan cada vez con más frecuencia casos en los que resulta difícil identificar “lo mejor o más deseable” desde el punto de vista ético. Para solucionar dichos dilemas, se recurre a modelos de análisis de casos y a modelos de fundamentación ética. Los modelos de análisis requieren atención, porque la identificación de la información relevante para emitir un juicio ético en algunas oportunidades resulta difícil. El presente artículo busca exponer algunos modelos de análisis de casos de uso frecuente en la bioética latinoamericana y hacer un análisis comparativo de los mismos. Luego de una revisión bibliográfica, se comentan seis modelos usados en la ética clínica, constatándose la gran diversidad que existe entre ellos, así como la existencia de factores ignorados que pueden interferir en el proceso de toma de decisiones éticas.(AU)

Advances in medicine cause every time with more frequency cases in which it is difficult to identify what is “the best or more accepted” from an ethical point of view. In order to solve these dilemmas, case analysis models and ethical foundation models are used. The analysis models require attention, because the identification of relevant information to issue an ethical judgment is difficult in some opportunities. This article tries to show some case analysis models of frequent use in Latin American bioethics and to make a comparative analysis of them. After a bibliographic review, six models used in clinical ethics are commented, showing the great diversity existing among them, as well as the existence of ignored factors which may interfere with the ethical decisions making process.(AU)

Os avanços da medicina ocasionam cada vez com mais frequência casos nos quais resulta difícil identificar “o melhor ou mais desejável” do ponto de vista ético. Para solucionar estes dilemas, se recorre a modelos de análise de casos e a modelos de fundamentação ética. Os modelos de análise requerem atenção, porque a identificação da informação relevante para emitir um juízo ético em algumas oportunidades resulta difícil. O presente artigo busca expor alguns modelos de análise de casos de uso frequente na bioética latino-americana e fazer uma análise comparativa dos mesmos. Após uma revisão bibliográfica, se comentam seis modelos usados na ética clínica, constatando-se a grande diversidade que existe entre eles, assim como a existência de fatores ignorados que podem interferir no processo de tomada de decisões éticas.(AU)