0333/2017 - Experiência de pessoas que vivem com a síndrome de berardinelli-seip no Nordeste Brasileiro. The experiences of people living with berardinelli-seip syndrome in the Brazilian Northeast.
O artigo analisa a experiência de pessoas que vivem com a Síndrome de Berardinelli-Seip no Nordeste brasileiro. Este estudo qualitativo foi desenvolvido com onze interlocutores, sendo nove pessoas vivendo com a síndrome e duas mães. Para coligir as informações, utilizaram-se observação participante, caracterização social e entrevistas semiestruturadas. Os dados foram analisados por meio da técnica de codificação temática. Emergiram duas categorias: (1) ‘o segredo é fechar a boca’: gerenciamento da alimentação na vida cotidiana; e (2) ‘ah, é uma travesti?’ Corpo, gênero e masculinização. Concluiu-se que na experiência dos interlocutores seus agenciamentos e criatividade se traduziram em estratégias para gerenciamento da alimentação que integravam gostos, valores, hábitos, prescrições biomédicas e prazeres envolvidos em situações de comensalidade. No que tange à corporeidade, evidenciou-se que as representações e as experiências com o corpo apresentam desigualdades de gênero, na medida em que a mulher passa a ser alvo privilegiado de estigmas, preconceitos e discriminação na vida adulta.
Palavras-chave:
Lipodistrofia generalizada congênita, Antropologia médica, Experiência da enfermidade, Alimentação, Gênero e Saúde
Abstract:
The article analyzes the experience of people living with the Berardinelli-Seip Syndrome in the Brazilian Northeast. This qualitative study was developed with eleven informants, with nine people living with the syndrome and two mothers. Information was gathered using participant observation, social characterization, and semi-structured interviews. Data were analyzed by means of a thematic coding technique. Two categories emerged: (1) \'the secret is to close the mouth\': management of food in everyday life; and (2) \'Ah, is she a transvestite?\' body, gender, and masculinization. The concluded reached is that in the experience of the informants strategies for food management that integrated tastes, values, habits, biomedical prescriptions and pleasures involved in commensality situations were produced based on their agencies and creativity. Regarding corporeality, it has been shown that representations and experiences with the body present gender inequalities, in so far as women refers more stigmas, prejudices and discrimination in adult life than men.
Keywords:
Lipodystrophy, Congenital Generalized; Anthropology, Medical; Illness Experience; Feeding; Gender and Health
The experiences of people living with berardinelli-seip syndrome in the Brazilian Northeast.
Resumo (abstract):
The article analyzes the experience of people living with the Berardinelli-Seip Syndrome in the Brazilian Northeast. This qualitative study was developed with eleven informants, with nine people living with the syndrome and two mothers. Information was gathered using participant observation, social characterization, and semi-structured interviews. Data were analyzed by means of a thematic coding technique. Two categories emerged: (1) \'the secret is to close the mouth\': management of food in everyday life; and (2) \'Ah, is she a transvestite?\' body, gender, and masculinization. The concluded reached is that in the experience of the informants strategies for food management that integrated tastes, values, habits, biomedical prescriptions and pleasures involved in commensality situations were produced based on their agencies and creativity. Regarding corporeality, it has been shown that representations and experiences with the body present gender inequalities, in so far as women refers more stigmas, prejudices and discrimination in adult life than men.
Palavras-chave (keywords):
Lipodystrophy, Congenital Generalized; Anthropology, Medical; Illness Experience; Feeding; Gender and Health
Dasmasceno, EB, Figueiredo, JG, França, JMB, Veras, JCD, Borges, REA, Melo, L. Experiência de pessoas que vivem com a síndrome de berardinelli-seip no Nordeste Brasileiro.. Cien Saude Colet [periódico na internet] (2017/set). [Citado em 23/12/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/experiencia-de-pessoas-que-vivem-com-a-sindrome-de-berardinelliseip-no-nordeste-brasileiro/16385?id=16385
