2280/2012 - NEUROFIBROMATOSE TIPO 1: REPRESENTAÇÕES SOCIAIS DA DOENÇA PARA PACIENTES E FAMILIARES NEUROFIBROMATOSIS TYPE 1: SOCIAL REPRESENTATIONS OF THE DISEASE FOR PATIENTS AND RELATIVES
A Neurofibromatose do tipo 1 (NF1) é uma doença com manifestações variadas. Poucos estudos abordaram os aspectos psicológicos associados a ela sob a ótica daqueles que têm NF1 ou de seus familiares. Neste estudo foram entrevistados 46 sujeitos, 28 pessoas com NF1 e 18 familiares, buscando-se identificar a compreensão da realidade cotidiana vivenciada por esses dois grupos e as possíveis diferenças entre eles, a partir do aporte teórico das representações sociais. O tratamento dos dados foi realizado com base na análise de conteúdo clássica, sendo organizadas em categorias e subcategorias a partir de seu sentido. Os resultados mostraram que a distribuição quantitativa por categorias teve frequências semelhantes para os grupos, mas diferenças qualitativas importantes foram observadas no que se refere ao sentido das respostas. Dificuldade na obtenção de informações sobre NF1 somado a poucas menções a redes sociais de apoio às pessoas com a doença ou seus familiares contribuíram para a identificação de um cenário de invisibilidade social em torno da NF1. Tais aspectos evidenciam a necessidade de maiores investimentos em estudos e intervenções relacionados à NF1, a fim de ampliar as condições de enfrentamento social da doença por parte daqueles que a vivenciam.
Palavras-chave:
Psicologia Social
Neurofibromatose
Representações Sociais
Saúde
Abstract:
Neurofibromatosis type 1 (NF1) is a disease with diverse manifestations. Few studies have approached the psychological aspects associated with it from the perspective of those who have NF1 or their families. In this study 46 subjects were interviewed, 28 people with NF1 (Group P) and 18 families (Group F) aiming to identify the understanding of ordinary reality experienced by these two groups and possible distinctions between them, based on the social representations presented by each group. Data treatment was developed through Classic Content Analysis. The respondents‘ answers were organized into categories and subcategories based on its senses. The results showed that the quantitative distribution of the categories had similar frequencies for both groups. However, important qualitative differences were observed in terms of the senses of the answers. Difficulty in obtaining information about NF1 added to few references about social networks support by people with the disease or their family members contributed to the identification of a backdrop of social invisibility around the NF1. These aspects highlight the need for greater investment in research and intervention related to NF1 in order to expand the social conditions by those who deal with the disease.
Keywords:
Social Psychology
Neurofibromatosis
Social Representations
Health
NEUROFIBROMATOSIS TYPE 1: SOCIAL REPRESENTATIONS OF THE DISEASE FOR PATIENTS AND RELATIVES
Resumo (abstract):
Neurofibromatosis type 1 (NF1) is a disease with diverse manifestations. Few studies have approached the psychological aspects associated with it from the perspective of those who have NF1 or their families. In this study 46 subjects were interviewed, 28 people with NF1 (Group P) and 18 families (Group F) aiming to identify the understanding of ordinary reality experienced by these two groups and possible distinctions between them, based on the social representations presented by each group. Data treatment was developed through Classic Content Analysis. The respondents‘ answers were organized into categories and subcategories based on its senses. The results showed that the quantitative distribution of the categories had similar frequencies for both groups. However, important qualitative differences were observed in terms of the senses of the answers. Difficulty in obtaining information about NF1 added to few references about social networks support by people with the disease or their family members contributed to the identification of a backdrop of social invisibility around the NF1. These aspects highlight the need for greater investment in research and intervention related to NF1 in order to expand the social conditions by those who deal with the disease.
Palavras-chave (keywords):
Social Psychology
Neurofibromatosis
Social Representations
Health
Cerello, A. C, Gianordoli-Nascimento, I. F., Moreira, A. H., Rocha, V. S., Ribeiro, L. M., Rezende, N. A.. NEUROFIBROMATOSE TIPO 1: REPRESENTAÇÕES SOCIAIS DA DOENÇA PARA PACIENTES E FAMILIARES. Cien Saude Colet [periódico na internet] (2013/Mar). [Citado em 28/09/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/neurofibromatose-tipo-1-representacoes-sociais-da-doenca-para-pacientes-e-familiares/12122?id=12122&id=12122
