Currently health professionals are faced with assisting patients with thalassemia major who reached adulthood, due to the advance of knowledge about the disease and the effects of therapies, especially the blood transfusion and chelation. The literature highlights the problem of irregular treatment adhesion by patients, especially the chelation, essential to their survival. In this study, the analysis of the sense given by thalassemic adults to their experience with the drug regimen is the goal, developed by medical anthropology and qualitative method. It was conducted with patients at the Blood Center of Ribeirão Preto, Hospital das Clínicas da Faculdade de Medicina de Ribeirao Preto-USP. To collect the data it was used oral report, by semi-structured interviews, obtaining narratives about the experience. Eleven young adults, six males, aged 22-32 years, with different educational levels and occupations attended the study. The interviews were transcribed and organized in individual texts. We followed the steps of inductive thematic analysis to analyze the data. The results are discussed in two themes: "The onset of disease and treatment" and "The life of thalassemic patients with treatment." In the first one we describe the memories of the beginning of treatment. The narratives show that they are well informed about the disease and treatments, and had contact with the death of a family member with thalassemia. Subjectively they highlight the difference of their identity by having the disease trait. In the second theme, we describe the long-lived therapeutic itinerary; the recognition of the importance of adhering to the treatment; changes and adaptations of the chelating agents used; the social stigma of living with the body changes; adverse effects of transfusion and chelation; the difficulties in maintaining their social functions; episodes of irregularity in following therapeutic treatment and its justifications. Through the themes we could observe that young adults with thalassemia major under the therapeutic regimen are resigned to their condition, that the disease and treatment do not exclude them from everyday life, but are in the center of their social relations. To reduce the suffering and stigma, they employ the normalization strategy, elaborated in the social group. This enables them to have a sense of order in life, of disease and treatment control. Thus, disruptions in treatment occur by the need for normalization of body and life, but that brings severe consequences for survival. At the end of the discussion, we reflect on the medical concept of adhesion confronting with the agreement and its implications for the care context with the thalassemic adult.
Objective: To evaluate hospital discharge among patients and their caregivers. Methods: A integrative literature review was performed in the database of Pubmed, CINAHL and Lilacs from 2000 and 2005, focusing on the adult patient discharge and elderly with clinical-surgical problems, published in the English or Portuguese language. Results: The population was made up of 54 publications and the sample was made up of 23 papers, which were sorted into two theme categories: 13 focused on the effectiveness and 10 on the process inefficiency. Concluding remarks: In the subjects standpoints, the effectiveness of the discharge planning stems to the provision of information related to the disease and its treatment, contents suitable to their socioeducational characteristics and needs, through individual educational strategies, visual and written, and suitable communication among professionals, patients, caregivers and services. Keywords: Patient discharge; Caregivers; Patient satisfaction RESUMO Objetivo: Avaliar a alta hospitalar entre pacientes e cuidadores. Métodos: Realizou-se uma revisão integrativa da literatura indexada nas bases de dados Pubmed, CINAHL e Lilacs de 2000 a 2005, focalizando a alta de pacientes adultos e idosos com problemas clínico-cirúrgicos, publicadas em língua inglesa ou portuguesa. Resultados: A população consistiu de 54 publicações e a amostra foi de 23 artigos, que foram classificados em duas categorias temáticas: 13 focalizaram a efetividade e 10 a ineficácia do processo. Considerações finais: Na visão dos sujeitos, a eficácia do planejamento da alta deve-se ao fornecimento de informações relacionadas à doença e tratamento, com conteúdos apropriados às suas características sócio-educacionais e necessidades, por meio de estratégias educacionais individuais, visuais e escritas, e comunicação adequada entre os profissionais, pacientes, cuidadores e serviços. Descritores: Alta do paciente; Cuidadores; Satisfação do paciente RESUMEN Objetivo: Evaluar el alta hospitalario entre pacientes y cuidadores. Métodos: Se llevó a cabo una revisión integrada de la literatura indexada en las bases de datos Pubmed, CINAHL y Lilacs del 2000 al 2005, enfocando el alta de pacientes adultos y ancianos con problemas clínico-quirúrgicos, publicadas en lengua inglesa o portuguesa. Resultados: La población estuvo constituída de 54 publicaciones y la muestra fue de 23 artículos, clasificados en dos categorías temáticas: 13 enfocaban la efectividad y 10 la ineficacia del proceso. Consideraciones finales: En la visión de los sujetos, la eficacia de la planificación del alta se debe al ofrecimiento de informaciones relacionadas a la enfermedad y tratamiento, con contenidos apropiados a sus características socio-educativas y necesidades, por medio de estrategias educativas individuales, visuales y escritas, y comunicación adecuada entre los profesionales, pacientes, cuidadores y servicios.
This study, based on medical anthropology and oral reports, analyzes the meanings attributed by thalassemic adults to their experiences with the treatment. Interviews were used to collect data, which were analyzed through inductive thematic analysis. Eleven young adults, six of whom were men, at different ages, with different educational levels and occupations participated in the study. The meanings are discussed through the theme "the lives of patients with thalassemia in relation to their treatment". This core meaning highlights the difference made in their identity by having the disease trait, the recognition of the importance of adhering to their treatment, the difficulties in maintaining their social functions, the patients' irregular treatment adherence and their justifications for nonadherence to their treatment. Thalassemic patients conform to their condition and employ a normalization strategy to control the disease and justify irregular treatment adherence.Descriptors: Beta-Thalassemia/therapy; Culture; Nursing. Descritores: Talassemia Beta/terapia; Cultura; Enfermagem. La experiencia de los talasémicos adultos con su tratamientoEl objetivo de este estudio fue analizar los sentidos dados por los talasémicos adultos a su experiencia con el tratamiento, con base en la antropología médica y en el método del relato oral. Para la recolección de datos usamos entrevistas y seguimos el análisis temático inductivo. Participaron once adultos jóvenes, seis del sexo masculino; con edades, niveles educacionales y profesiones, distintas. Los sentidos da la experiencia son presentados por el tema "La vida del portador de talasemia con el tratamiento". El tema destaca la identidad de ser diferente por: el trazo de la enfermedad, el reconocimiento de la importancia de la adhesión al tratamiento, las dificultades en mantener sus funciones sociales y los episodios de irregularidad en la terapia y sus justificaciones. Aprendimos que los portadores están resignados con su condición y emplean la estrategia de normalización para el control de la enfermedad y para justificar la irregularidad en el tratamiento.Descriptores: Talasemia Beta/terapia; Cultura; Enfermería. Introduction The impact of thalassemia major and its treatments on the life of adult patientsA study addressing treatment adherence among 40 American individuals older than 18 years old showed that 37 of them used chelators through infusion; 77% of them had missed at least one dose in the previous month due to its side effects such as pain and irritation at the application site. The authors concluded that the chelator's side effects are responsible for non-adherence to treatment (4) .The expectations of thalassemic individuals in relation to life composed the topic of a study involving 67 Greek patients aged between 18 and 45 years old.Of these, 75% had a bachelor's degree, 71% worked, 67% had negative treatment adherence and 77.6%had important complications. The results showed that pessimism in relation to the future was predominant among those with complicatio...
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