RELACIÓN ENTRE EL ACCESO A LA SALUD Y CALIDAD DE VIDA DE MUJERES CON SED HIPERMÓVIL

Abstract

Introduction: This study investigates the relationship between the quality of life of Chilean women suffering from hyperplastic Ehlers-Danlos syndrome (HDEHS) and the national health care system. The paucity of information and widespread ignorance about HEDS present significant challenges, potentially leading to misdiagnosis or late diagnosis. Approaching this condition from an Occupational Therapy perspective, in line with the framework provided by the American Occupational Therapy Association (AOTA), becomes crucial to mitigate the occupational limitations faced by affected individuals. Method: The study used a qualitative approach with a non-probabilistic sample of 6 Chilean women. The semi-structured interviews were based on the AOTA conceptual framework and were analyzed using content analysis techniques, including axial and open coding. Results: A close relationship was observed between access to health care and quality of life of women with SEDh, highlighting the impact of social determinants on health and the lack of knowledge about the pathology. Although state care tends to be less specialized, the lack of professionals familiar with the syndrome increases the costs of care and treatment in both cases. Conclusion: Both health personnel and family members should understand and recognize this condition. Lack of knowledge and socioeconomic status are major barriers for those with the syndrome, highlighting the need for awareness and education about this pathology.