Sjögren’s syndrome (SS) is a disease with autoimmune features that affects mainly women and compromises the health-related quality of Life (HRQoL); it is important to evaluate illness experience for a better understanding of the life situation of the patient. The aim of the study was to summarize the individual life experiences and determine the impact of HRQoL and oral health-related quality of life (OHRQoL) and their correlation with health self-assessment in women with SS. The life experiences evaluation employed a concept mapping design to structure qualitative content obtained from semi-structured interviews. Hierarchical cluster analysis was used to analyze the patient’s experiences. EQ-5D-5L and OHIP-14Sp were used. The correlation between appreciation of the general health status and OHIP-14 was evaluated. The experience classification by patients were analyzed and a dendrogram was obtained, identifying 10 clusters of disease experiences of SS, being limitations, pain and difficulties, coping and attitudes towards treatment the most common. Pain/discomfort in EQ-5D-5L and physical pain and psychological discomfort in OHIP-14 were the most affected dimensions in the patients. The results support the theoretical perspective that the experience of illness is relevant to describing the main difficulties of patients with SS and how it affects their quality of life.
Background/Objectives: Sjögren’s Syndrome (SS) is a chronic degenerative rheumatic disease. Because of its chronic nature, it significantly affects the quality of life of those who suffer from it. Methods: This qualitative study investigated disease experience among women suffering from SS to understand its impact on their overall well-being. In-depth interviews were conducted with 15 women who suffer from SS. Interviews were analyzed using the Grounded Theory methodology, using open, axial, and selective coding. Results: Three central phenomena of disease experience were identified: invisibility; uncontrollability; and unpredictability. Conclusions: SS disease experience has a strong imprint on emotional well-being and sense of self-control among middle-aged women. Understanding SS impacts on women’s lives is important to better understand the disease and contribute to recognizing potential areas of management and social support in relevant windows of opportunity within the health-disease continuum.
1 January 2024 in Cadernos Brasileiros de Terapia Ocupacional
Resumen Introducción La violenta represión ocurrida en Chile durante el estallido social (2019-2020) dejó un número sin precedentes de personas lesionadas con resultado de trauma ocular y maxilofacial producto de la acción de agentes del Estado, desatando una crisis socio-sanitaria que requirió del abordaje las problemáticas de salud con énfasis en el daño estructural y funcional. Objetivo Analizar la experiencia cotidiana de personas afectadas por trauma ocular y/o maxilofacial desde una perspectiva de derechos humanos, con énfasis en aportar antecedentes que contribuyan a los procesos de apoyo funcional y psicosocial. Método Estudio de enfoque cualitativo, considerando el análisis de 3 entrevistas en profundidad centradas en la experiencia cotidiana producida a raíz de la violencia policial. Éstas se analizaron en base a la técnica de análisis de contenido, con una posterior triangulación. Resultados Se apreciaron una serie de interferencias y repercusiones cotidianas producto del trauma, generando el fenómeno de una cotidianidad interferida, además del extrañamiento de sí misma/o. Se discutió sobre el contraste entre las experiencias y expectativas de la atención en salud y procesos de reparación, que resultan aún insuficientes y tienden hacia la revictimización. Conclusión El acceso a rehabilitación funcional y psicosocial es parte fundamental de los procesos de reparación integral de las personas que vivieron estas experiencias traumáticas durante el estallido social. Es fundamental que los dispositivos sanitarios y judiciales profundicen abordajes desde una perspectiva de derechos humanos incorporando el enfoque de género para cumplir los principios de verdad, justicia, reparación y garantías de no repetición.
Un grupo de reconocidos científicos investigadores y académicos de varias partes del mundo se encuentran trabajando desde marzo de 2017 para intentar mejorar la salud bucal de las comunidades. Los integrantes del grupo son: Newell W. Johnson (Australia y Reino Unido), Lois K. Cohen (Estados Unidos), Richard Watt (Reino Unido), Gunnar Dahlen (Suecia), Alfonso Escobar (Colombia), Ole Fejerskov (Dinamarca) y Firoze Manji (Canadá y Kenya). Estos referentes han publicado el documento “Declaración de la Cascada” y han dado conferencias manteniendo discusiones sobre el futuro de la profesión odontológica en Colombia, Chile y Brasil, reflejadas en varios artículos publicados. Colegas de Argentina, Chile y Uruguay nos hemos sumado a esta discusión con la propuesta de reflexionar sobre estos temas y trabajar en el desafío de lograr una salud bucal integrada a la salud con equidad. Esta reflexión se publica en simultáneo en la Revista de la Asociación Odontológica Argentina, en la revista Odontoestomatología (publicación de la Facultad de Odontología de la Universidad de la República de Uruguay) y en la Revista Odontológica Científica Chilena (publicación de la Facultad de Odontología de la Universidad de Chile). Palabras clave: Educación odontológica, profesión odontológica, salud bucal.
1 January 2024 in Cadernos Brasileiros de Terapia Ocupacional
Introduction The violent repression that occurred in Chile during the social outbreak (2019-2020) left an unprecedented number of people injured as a result of ocular and maxillofacial trauma as a result of the action by state agents, unleashing a socio-sanitary crisis that required the approach of health problems with an emphasis on structural and functional damage. Objective To analyze the daily experience of people affected by ocular and/or maxillofacial trauma from a human rights perspective, with emphasis on providing background information that contributes to functional and psychosocial support processes. Method Study with a qualitative approach, considering the analysis of three in-depth interviews focused on the daily experience produced as a result of police violence. These were analyzed based on the content analysis technique, with subsequent triangulation. Results A series of interferences and daily repercussions as a result of the trauma were observed, generating the phenomenon of an interfered daily life in addition to self-estrangement. The contrast between the experiences and expectations of health care and reparation processes was discussed, which are still insufficient and tend towards re-victimization. Conclusion Access to functional and psychosocial rehabilitation is a fundamental part of the processes of integral and psychosocial repair for the people who lived through these traumatic experiences during the social outbreak. It is essential that health and judicial mechanisms deepen approaches from a human rights perspective, incorporating the gender approach to comply with the principles of truth, justice, reparation, and guarantees of non-repetition.