0281/2018 - Navegando em águas raras: Notas de uma pesquisa com famílias de crianças e adolescentes vivendo com doenças raras. Navigating rare waters: Notes a survey of families of children and adolescents living with rare diseases.
No presente artigo, procura-se evidenciar a construção da navegação social em um hospital. O enfoque dado privilegiou os bastidores da aplicação de um questionário quantitativo sobre os custos da família com os cuidados/tratamento de seu(sua) filho(a) com doença rara. Permeando a descrição desses processos estão os marcadores de gênero, raça e geração de um dos autores deste artigo. A interação entre pesquisador e sujeitos da pesquisa em campo é socialmente construída, conforme as circunstâncias específicas que demarcam o convite para participar da pesquisa, bem como a coleta de dados, por isso o lugar que ocupa e a postura ética precisam estar bem definidos e claros para o pesquisador. O exercício metodológico e ético de construção desta navegação social com a instituição hospitalar e os sujeitos pesquisados foi permeada por dificuldade e incertezas, mas também por surpresas e aprendizados. Foi possível observar características marcantes da instituição, de seus funcionários e das famílias entrevistadas e, avaliar as estratégias metodológicas utilizadas.
In this article, we seek to highlight the construction of social navigation in a hospital. The focus is on the backstage of applying a quantitative questionnaire on the costs of the family to the care/treatment of their child with a rare disease. The description of this process is articulated to the social markers of gender, race/ethnicity and generation of one of the authors of this paper. The interaction between the researcher and the participants is socially constructed, according to the specific circumstances that includesthe invitation to participate in the research to the moment of data collection; that is why the ethical issues and his/her position, as a researcher must be clear for them. The methodological and ethical construction of this social navigation with the hospital and with the participants were permeated by difficulties and uncertainties, but also by surprises and learning. It was possible to understand important characteristics of the institution, the employees and families interviewed to evaluate the methodological strategies.
Navigating rare waters: Notes a survey of families of children and adolescents living with rare diseases.
Resumo (abstract):
In this article, we seek to highlight the construction of social navigation in a hospital. The focus is on the backstage of applying a quantitative questionnaire on the costs of the family to the care/treatment of their child with a rare disease. The description of this process is articulated to the social markers of gender, race/ethnicity and generation of one of the authors of this paper. The interaction between the researcher and the participants is socially constructed, according to the specific circumstances that includesthe invitation to participate in the research to the moment of data collection; that is why the ethical issues and his/her position, as a researcher must be clear for them. The methodological and ethical construction of this social navigation with the hospital and with the participants were permeated by difficulties and uncertainties, but also by surprises and learning. It was possible to understand important characteristics of the institution, the employees and families interviewed to evaluate the methodological strategies.
Campos, D. S, Moreira, M. C. N., Nascimento, M. A. F. Navegando em águas raras: Notas de uma pesquisa com famílias de crianças e adolescentes vivendo com doenças raras.. Cien Saude Colet [periódico na internet] (2018/jun). [Citado em 22/12/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/navegando-em-aguas-raras-notas-de-uma-pesquisa-com-familias-de-criancas-e-adolescentes-vivendo-com-doencas-raras/16814?id=16814&id=16814
