RESUMO
OBJECTIVE: To evaluate awareness of and attitudes toward preimplantation genetic testing (PGT) for sickle cell disease (SCD) among parents of children with SCD. STUDY DESIGN: Parents of children with SCD were given an educational handbook on PGT before a routine SCD clinic visit. After their clinic visit, parents were asked to complete an anonymous survey. RESULTS: Of 83 patents approached, 67 (81%) completed the survey. Only 16 of the 67 parents (24%) were previously aware of PGT for SCD. After our clinic-based education, 65 of the 67 parents (97%) indicated that it was important or very important for parents of children with SCD to know about PGT. Among parents interested in having more children, 29 of 32 (91%) would personally consider using PGT if covered by insurance. CONCLUSIONS: Parents of children with SCD are generally not aware of PGT. When educated in clinic, parents viewed information on PGT as valuable. Pediatricians and other health care professionals should inform parents of children with SCD about this reproductive option.
Assuntos
Anemia Falciforme/diagnóstico , Testes Genéticos/métodos , Pais , Cuidados Pré-Operatórios/métodos , Transplante de Células-Tronco , Adulto , Anemia Falciforme/genética , Criança , Feminino , Humanos , Masculino , Inquéritos e QuestionáriosRESUMO
In this transnational study, we aimed at providing insights into women's views and attitudes towards their reproductive rights during the Zika epidemic. Women of distinct nationalities and ethnicities were recruited from various locations in Brazil, Puerto Rico, and the United States. We conducted semi-structured interviews that suggest that participants reproductive decisions were intimately related to personal convictions and cultural beliefs, and their actions and thoughts were embedded in their sociocultural norms. The majority of women interviewed communicated that it takes courage to make the extreme, emotional, and overwhelming decision to have an abortion. The findings of this study suggest that women from different countries and regions, and with different levels of social capital, faced the same conflicts concerning reproductive decisions. Thus, we argue for the importance of considering cultural beliefs and behaviors when implementing health prevention or protection measures to control epidemics. This epidemic may be yet another opportunity for the improvement of women's health by strengthening culturally sensitive family planning services, and a broad spectrum of public health interventions.
Neste estudo transnacional, pretendemos fornecer informações sobre as opiniões e atitudes das mulheres em relação aos seus direitos reprodutivos durante a epidemia do Zika. Mulheres de diferentes nacionalidades e etnias foram recrutadas em vários locais do Brasil, Porto Rico e Estados Unidos. Foram realizadas entrevistas semiestruturadas que sugerem que as decisões reprodutivas dos participantes estavam intimamente relacionadas às convicções pessoais e crenças culturais, e suas ações e pensamentos foram incorporados em suas normas socioculturais. A maioria das mulheres entrevistadas comunicou que é preciso coragem para tomar a decisão extrema, emocional e esmagadora de fazer um aborto. Os achados deste estudo sugerem que mulheres de diferentes países e regiões, e com diferentes níveis de capital social, enfrentam os mesmos conflitos relativos às decisões reprodutivas. Assim, defendemos a importância de considerar crenças e comportamentos culturais ao implementar medidas de prevenção ou proteção à saúde para controlar epidemias. Esta epidemia pode ser mais uma oportunidade para melhorar a saúde das mulheres, fortalecendo serviços de planejamento familiar culturalmente sensíveis e um amplo espectro de intervenções de saúde pública.
RESUMO
O estudo investigou a percepção de mulheres vivendo com HIV/Aids quanto aos efeitos da soropositividade sobre suas escolhas reprodutivas. Optou-se pelo delineamento qualitativo com uso de entrevista individual semi-estruturada com trinta mulheres HIV positivas em idade reprodutiva. A maior parte delas (n=18) afirmou que a soropositividade modificou o desejo de ter filhos. As categorias de motivos mais freqüentes foram o receio do risco de transmissão do HIV para o bebê e soropositividade como sinônimo de morte. Os resultados sinalizam a necessidade de que os serviços atuem em consonância com os programas de atenção integral à saúde da mulher e os princípios do Sistema Único de Saúde, acolhendo e respeitando as decisões reprodutivas de mulheres soropositivas.
AIDS epidemiological profile indicates a feminine trend particularly among those in the reproductive age. The study investigated the HIV positive women perception of the seropositivity effects on their reproductive choices. It was chosen a qualitative research design with the use of semi-structured individual interviews with thirty HIV positive women in their reproductive age. As the most frequent categories of reasons, most women reported they did not wish to have children, showing the fear of HIV transmission to the baby and seropositivity as a synonym of death. The findings indicate the need for the services in HIV/AIDS to act in line with the programs of comprehensive health care of women and the principles of Brazilian Health System, respecting the reproductive decisions of seropositive women.