title: [The quality of life of Brazilian and North-American adolescents with spina bifida].
abstract: The purpose of the present research is to explore and describe the quality of life of adolescents in two different cultural environments, the Brazilian and the North American. The point of reference of the investigation is the dimension encompassing the concept of quality of life. This qualitative research utilized semi-structured interviews and focal groups in two health-care units specialized in the care of youths with spina bifida, one in Brazil and another in the USA. The discourses reflected the need for more comprehensive categories of quality of life, not pulverizing the life experience. The results reveal inequality in the interactions between the healthy and the disabled and show that the stigma permeates all dimensions of the life of these individuals, interfering in their social inclusion, as well as in their subjective construction and self-esteem. Two fields of reference were identified for the concept of quality of life: (1) the micro-political that refers to social values, beliefs and expectations that are created through face to face encounters; and (2) the macro-political referring to the public universe, democracy and human rights.
authors.affiliation: Programa de Atenção Integral à Criança Hospitalizada, Departamento de Ensino, IFF, FIOCRUZ, Rio de Janeiro, RJ, 22250-020. ahrsoares@iff.fiocruz.br
authors.forename: Ana Helena Rotta
authors.initials: AH
authors.lastname: Soares
authors.forename: Martha Cristina Nunes
authors.initials: MC
authors.lastname: Moreira
authors.forename: Lúcia Maria Costa
authors.initials: LM
authors.lastname: Monteiro
mesh_terms: D000293:Adolescent; D001938:Brazil; D005260:Female; D006801:Humans; D008297:Male; D011788:Quality of Life; D016135:Spinal Dysraphism / Q000523:psychology; D014481:United States; D055815:Young Adult