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INTRODUCTION: The Uniform Determination of Death Act (UDDA) ensures that individuals with irreversible cessation of circulatory, respiratory, or brain functions receive timely palliative care. Our research has focused on identifying disparities in mortality among individuals with Down syndrome (DS) based on gender, age, racial groups, and geographic regions within the United States over 22 years. This study aims to analyze differences in the location of death, including hospitals, nursing homes, hospice care facilities, and unspecified locations, considering demographic and regional variables. METHODOLOGY: Utilizing a cross-sectional observational study design, we extracted data from the Centers for Disease Control and Prevention's Wide-ranging Online Data for Epidemiologic Research (CDC-WONDER) database, specifically targeting deaths coded under the International Classification of Diseases, 11th Revision (ICD-11) code "Q-90." This analysis, covering 1999 to 2020, segmented the data by age, gender, race, and United States Census regions. Death locations were categorized into home/hospice, medical facilities, and nursing/other facilities. Data analysis was conducted using Microsoft Excel, and the Autoregressive Integrated Moving Average (ARIMA) model was applied for statistical assessments. RESULTS: Our analysis included 22604 deaths related to DS, as recorded in the CDC-WONDER database from 1999 to 2020. The majority of these deaths occurred in medical or nursing facilities, with home or hospice deaths accounting for 6106 cases and other locations for 5.29% of deaths. Univariate logistic regression was used to identify predictors of home or hospice deaths, revealing a trend of increasing deaths in these settings over time. CONCLUSIONS: Between 1999 and 2020, there was a notable increase in the number of individuals with DS dying at home or in hospice care, especially among those aged 55-64. Female individuals and those identified as white experienced higher mortality rates than other demographic groups. This shift highlights the need to understand the disparity in places of death within this population, ensuring equitable access to quality end-of-life care for all individuals with DS.
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Abstract The purpose of this study was to explore fathers' perceptions about their role in the family, and the characteristics of their involvement in their children's lives in the Colombian context. The sample consisted of 12 Colombian fathers. The study used a qualitative methodology, one-hour in depth interviews were conducted with the participants. Results indicated important changes in the role of fathers and mothers in Colombian families. Fathers' perceptions departed to some extent from the traditional pattern attributed to nuclear families, where men are considered as the only economic provider and authority figure in the family. This departure places fathers in a category we would call "in transition", which includes perceptions of more equitable parental roles within the family and a combination of features from other typologies of fatherhood proposed in the literature. Fathers also reported a desire to participate more at home and to be more involved in their children's lives; they also emphasized the importance of expressing love and affection to their children. Work-family conflict and the impact of the quality of the father-child relationship emerged as important categories in the fathers' perceptions of their role and involvement in the family. In Colombia research on fathers is scarce and family policies mainly focus on mothers as the principal caregiver. A better understanding of fathers' roles and involvement in the family and with children will contribute to the development of programs and policies oriented toward all family members and family relationship systems.
Resumen El propósito de este estudio fue explorar las percepciones de los padres sobre su rol en la familia y las características de su involucramiento en la vida de los hijos en el contexto colombiano. La muestra estuvo conformada por 12 padres colombianos. El estudio siguió una metodología cualitativa en la cual se llevaron a cabo entrevistas en profundidad de una hora de duración con los participantes. Los resultados indicaron cambios importantes en el rol de los padres y las madres en las familias colombianas. Las percepciones de los padres se alejaron en alguna medida del patrón tradicional atribuido a las familias nucleares en las cuales los hombres son considerados como los proveedores exclusivos y las figuras de autoridad de la familia. Esta separación ubica a los padres en una categoría que nosotros llamaríamos "en transición", la cual incluye percepciones de roles parentales más equitativos dentro de la familia y una combinación de rasgos de otras tipologías de la paternidad propuestos en la literatura. Los padres también reportaron un deseo por participar más en sus hogares y por estar más involucrados en la vida de sus hijos. Adicionalmente, ellos enfatizaron en la importancia de expresar amor y afecto a sus hijos. El conflicto entre el trabajo y la familia y el impacto de la calidad de la relación padre-hijo emergieron como categorías fundamentales en las percepciones de los padres sobre su rol e involucramiento en la familia. En Colombia, la investigación sobre los papás es escasa y las políticas de familia se centran principalmente en las madres como cuidadoras principales. Una mayor comprensión del rol de los papás y de su involucramiento en la familia y con los hijos contribuirá al desarrollo de programas y las políticas orientadas hacia todos los miembros de la familia y hacia los diferentes sistemas de relación en el contexto familiar.