Significado de la enfermedad, experiencias y expectativas de pacientes con mielofibrosis / Meaning of illness, experiences and expectations of patients with myelofibrosis

RESUMEN

Fundamentos La mielofibrosis es una enfermedad rara que afecta personas adultas especialmente sobre la cual no se encuentran estudios que investiguen el sentir del padecimiento en los pacientes o que aborden lo que ha representado esta enfermedad en la vida El trabajo buscó determinar el significado, las experiencias y las implicaciones que la mielofibrosis tiene en pacientes colombianos. Métodos: Estudio cualitativo de 10 pacientes con mielo fibrosis. Muestreo teórico intencionado. Técnica entrevista a profundidad realizada por psicóloga clínica con cuestionario semiestructurado diseñado por los investigadores. Entre diciembre 2013 - enero 2014. Análisis de contenido con apoyo del software Atlas ti. Versión 7, licencia educativa multiusuario. Resultados: 7 hombres, 3 mujeres con edades entre 19-80 de varias regiones del país, con diagnostico entre 1-17 años. Edad mediana 63.5 años. Cinco con diagnóstico inicial de anemia, leucemia o hepatomegalia. Ninguno conocía previamente la enfermedad. Atribuyen la causa cocinar con leña, manipulación de materiales en su trabajo, vida agitada sin buena alimentación o razones divinas. El padecimiento de mielofibrosis cambio las concepciones sobre la vida, sus expectativas, hábitos y costumbres. Tienen la convicción de vivir con apoyo del sistema de salud. La familia, la religión y los médicos se convierten en su apoyo. Conclusiones No conocían sobre enfermedad. Manifiestan emociones y sentimientos de incredulidad, angustia, tristeza, miedo entre otros y es la familia, la creencia en Dios y la cercanía y comprensión del médico la mejor red de apoyo. Su expectativa frente a la enfermedad es de esperanza

ABSTRACT

Background: Myelofibrosis is a rare disease on which no studies about the suffering of patients who have it have been conducted. this work seeks to determine the significance, the experiences and the implications that Myelofibrosis has in Colombian patients. Methods: This is a qualitative study method directed to Myelofibrosis diagnosed patients where theoretical intentional samples were collected. To such end, 10 interviews were conducted between December 2013 and January 2014 by a Clinical Psychologist with semi-structured questionnaires carefully designed by the researchers. The content analysis was developed with Atlas.ti® software support, multi-user educative license, version 7. Results: 7 male and 3 female patients between 19-80 years old from various regions of the country were enrolled whose illness had been diagnosed within the 1 and 17 years from the onset of symptoms. Five of the patients had an initial diagnosis of Anemia, Leukemia or Hepatomegaly. None of them knew about their disease previously. They attributed the cause to such symptoms to factors like cooking with firewood, the handling of materials at their work, busy life with poor eating habits or to spiritual reasons. Suffering from the illness has substantially changed the patients’ conceptions about life and therefore their expectations, habits, and customs. They have the conviction to continue living with the support of the health system and to overcome the disease. Family, religion, and doctors become their support. Conclusions: They did not know anything about the illness previous to the diagnosis. However, they express emotions and feelings of disbelief, anger, sadness, and fear among others and it is the family, the belief in God and the closeness and understanding of their doctors which constitutes their main support network. Hope is the only expectation he has towards the disease