Adoecimentos e sofrimentos de longa duração: contribuições das Ciências Sociais e Humanas em Saúde

Abstract

Long-term illness and suffering, referred to as chronic diseases in biomedicine, include a broad gamut of illnesses that currently occupy an important place in the morbimortality of the Brazilian population, in the process of aging and demographic and epidemiological transitions. Epidemiology has traditionally been concerned with the incidence, prevalence, mortality and morbidity related to these diseases and, for some time at least, the national social health sciences have contributed little with concepts and methodologies to investigate the diseases of those affected by them, contrary to the Anglo-Saxon tradition that has important works in research in this respect.From 2000 onwards, however, it elicited the interest of social scientists and health professionals using social science approaches and methodologies in researching a range of objects. These included the interface between epidemiology and the social sciences concerned with the social determinants of the illnesses, with the way of life of the populations, with the system of signs, meanings and actions, with the application of ethnographic studies, which complement epidemiological investigations, among other approaches.Specific investigations of the social sciences on long-term illness and suffering are in Brazilian literature addressing reflections on scholarly medical knowledge and its theories about some of these illnesses and sufferings; the contents of the media messages; common sense explanations; experience and representations; the social construction of some diseases; the history of diseases; administration of treatment and care; the educational interventions and their models, as well as specific studies on the policies, the care and management models shared with the policy and planning area.This thematic issue seeks to disseminate the contributions of Brazilian and some international researchers on certain long-term illnesses and suffering, focusing mainly on the interpretations of the patients with regard to ways of reflecting upon, acting and dealing with illnesses, their treatment, diagnosis, effect and implications on their lives and biographies. A part of the studies composed the presentations of the Working Group on Long-term Illness and Suffering of the VII Brazilian Congress of Social and Human Sciences in Health, held in Cuiabá in 2016, coordinated by the organizers of this thematic issue.It is not a question of addressing a wide range of conditions of long-term illness and suffering, but of outlining some conceptual and methodological reflections that can be incorporated into future studies; to address experiences and care with rare diseases of genetic or other origin, to focus on the types of treatments and therapies applied to certain diseases that require a long period of submission of patients suffering from them.

Narrativas sobre a experiência com a doença de Gaucher

“…Em revisão da literatura Antropológica e Sociológica internacional (norte-americana e inglesa) publicada em oito periódicos sobre as enfermidades crônicas no período 1980 a 2005, Canesqui 18 constatou que os estudos abordaram os seguintes temas: a experiência da enfermidade; as percepções e estratégias na doença crônica; a perda do self e da auto imagem corporal; a ruptura biográfica; a experiência estigmatizante; as narrativas sobre as enfermidades; e as concepções leigas e eruditas e os processos de ajustamento ou de legitimação/deslegitimação. Posteriormente, a mesma autora reviu a literatura nacional sobre enfermidades crônicas em seis periódicos de Saúde Coletiva/Saúde Pública 25 no período de 1997 a 2008, e analisou as contribuições das Ciências Sociais e Humanas em 75 artigos e resenhas de livros. Desta vez, os temas pesquisados centraram-se nas reflexões críticas do saber médico; nas explicações do Senso Comum sobre a gênese das enfermidades; nas reflexões epistêmicas ou antropológicas sobre a dor crônica; na experiência da enfermidade, nas representações e nos estigmas envolvidos; no cuidado associado ou não às intervenções educativas; e na análise das políticas, dos modelos assistenciais e de gestão.…”

“…A mesma autora 25 Há diversas definições e abordagens na literatura Socioantropológica sobre a experiência da enfermidade, tendo este trabalho destacado as de Gomes 22 , para quem a experiência da enfermidade é um fenômeno construído historicamente e socialmente, e de abordagem interdisciplinar; as de Langdom, que vê a doença como um processo subjetivo, mediado pela cultura, pelas estruturas e pelas relações sociais; e as de Alves 42 , para quem a experiência do adoecimento é um fenômeno intersubjetivo, moldado pelo conhecimento do Senso Comum, podendo ser expressa e compartilhada por meio das histórias contadas pelos adoecidosperspectiva esta escolhida nesta tese.…”