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).

Parents of children having congenital heart diseases (CHDs) develop symptoms of depression, distress, anxiety, and hopelessness more frequently than parents of healthy children. Associated with the described symptoms, parents may experience a lack of control and disempowerment, which decreases the parent’s agency, a construct from development studies, and which may have negative consequences on adherence to treatment. The primary aim of this study was to assess the effect of medical treatment on well-being and agency in parents of children having CHDs, in Chile, and to compare it with reference values. Forty parents of children having CHDs (before surgery and before hospital discharge) and 115 parents of healthy children were surveyed. The following scales were applied to this population: the General Health Questionnaire, the Basic Psychological Needs Scales, the Self-Determination Scale, the Beck Hopelessness Scale, and a socioeconomic survey. Children’s surgery decreased parents’ hopelessness (3.13 ± 0.35 and 2.18 ± 0.40, P = .04), and no significant differences were found in the remaining scales. Parents of children with CHDs scored significantly worse than parents of healthy children on the General Health Questionnaire (13.82 ± 1.03 and 9.21 ± 0.64, P = .001). This difference was not found using the others scales. Children’s surgery has a positive effect on parent’s hopelessness, but it does not have any impact on their well-being nor agency. Parents of children with CHD have a decreased well-being compared to parents of healthy children but have a similar level of agency. Socioeconomic level and gender may influence this association.

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.

Como Centro de Bioética, y con el apoyo de académicos de la Facultad de Medicina de la Pontificia Universidad Católica de Chile, planteamos algunos principios y valores que consideramos importante resguardar en la toma de decisiones del equipo médico en el contexto antes descrito. Este documento busca aportar una mirada ética —y no exclusivamente técnica— para esbozar un marco general que apoye a los equipos de salud en la toma de decisiones en estas condiciones excepcionales de gran desequilibrio entre las necesidades y los recursos disponibles.

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.

El objetivo de este artículo es analizar las convergencias, complementariedades y diferencias entre la noción de desarrollo humano de Amartya Sen y el PNUD con el pensamiento de Benedicto XVI y Francisco. Las distintas nociones de desarrollo humano incluyen la integralidad o multidimensionalidad de las personas, así como la inclusión y la sustentabilidad. Cada noción de desarrollo supone una visión del ser humano, de la libertad, de la responsabilidad y de la agencia. Se discute acerca de la relevancia de las instituciones, la eficiencia y la complejización de índices que consideren tanto lo social como lo ambiental. Finalmente, se postulan los aportes de la ética social cristiana a las políticas públicas en esta materia.