Desde el corazón de un padre. Luces y sombras durante la leucemia / From the heart of a father. Lights and shadows during leukemia

La leucemia es un tipo de cáncer hematológico que provoca una proliferación anormal de leucocitos. Con el relato biográfico que se presenta a continuación se pretende describir las vivencias de una persona que mantiene una actitud positiva para afrontar las dificultades y cambios que surgen a raíz del diagnóstico. Para ello, se ha realizado un estudio cualitativo de carácter fenomenológico siguiendo la metodología de Amezcua y Hueso. El informante es Paco, por haber vivido junto a su hijo el proceso completo de la enfermedad. Dicho relato sigue un hilo conductor: antecedentes, primeras pruebas y diagnóstico, afrontamiento personal y familiar, reacciones frente a la hospitalización, donación de médula, pensamientos y creencias durante el proceso, recomendaciones y futuro. Conocer esta historia ayuda a personas que se encuentren en la misma situación y desde el punto de vista sanitario, permite mejorar la asistencia y humanizar los cuidados

Leukemia is a type of hematologic cancer that causes abnormal leukocyte proliferation. The biographical account presented below is intended to describe the experiences of a person who maintains a positive attitude to face the difficulties and changes that arise as a result of the diagnosis. For this, a qualitative study of phenomenological character has been carried out following the methodology of Amezcua and Hueso. The informant is Paco, for having lived with his son, the whole process of the disease. This story follows a very clear guiding thread: past, first tests and diagnosis, personal and family coping, reactions to hospitalization, bone marrow donation, thoughts and beliefs during the process, recommendations and future. Knowing this story, helps people who are in the same situation and from a health point of view, it allows to improve assistance and humanize care

Treatment refusal and abandonment in childhood acute lymphoblastic leukemia in Indonesia: an analysis of causes and consequences.

BACKGROUND: Treatment refusal and abandonment are common causes of treatment failure in childhood acute lymphoblastic leukemia (ALL) in many developing countries. In most studies reasons for abandonment were based on the opinion of health-care providers (HCP), very few studies have focused on the parental point-of-view. Aims of the study were to analyze the parents' reasons of abandonment and to ascertain the fate of children who abandoned treatment in a pediatric oncology centre in Yogyakarta, Indonesia. METHODS: We conducted home-visits to interview families of ALL patients, diagnosed between January 2004 and August 2007, who refused or abandoned treatment. RESULTS: From January 2004 to August 2007, 159 patients were diagnosed with ALL of which 40 children (25%) refused or abandoned therapy. Thirty-seven (93%) of these children were home-visited. Reasons for abandonment were complex. Most parents mentioned several reasons. Financial and transportation difficulties were not the only, or even the main reasons, for abandonment. Belief of ALL incurability, experience of severe side effects and dissatisfaction with HCP were also important considerations. Most patients (64%) abandoned treatment during the diagnostic-evaluation or remission-induction phase. Of the 37 patients who refused or abandoned treatment, 26 (70%) children died, and 11 (30%) children were still alive, 2 of them more than 2 years after abandonment. CONCLUSIONS: Reducing treatment abandonment of childhood ALL in developing countries requires not only financial and transportation support, but also parental education, counseling and psychosocial support during therapy, improvement of quality-of-care and adequate management of side effects.