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Background: Traditional hierarchical approaches to research give privilege to small groups with decision-making power, without direct input from those with lived experience of illness who bear the burden of disease. A Research Justice framework values the expertise of patients and communities as well as their power in creating knowledge and in decisions about what research is conducted. Preterm birth has persisted at epidemic levels in the United States for decades and disproportionately affects women of color, especially Black women. Women of color have not been included in setting the agenda regarding preterm birth research. Methods: We used the Research Priorities of Affected Communities protocol to elicit and prioritize potential research questions and topics directly from women of color living in three communities that experience disproportionately high rates of preterm birth. Women participated in two focus group sessions, first describing their healthcare experiences and generating lists of uncertainties about their health and/or healthcare during pregnancy. Women then participated in consensus activities to achieve 'top-priority' research questions and topic lists. The priority research questions and topics produced by each group were examined within and across the three regions for similarities and differences.Results: Fifty-four women participated in seven groups (14 sessions) and generated 375 researchable questions, clustered within 22 topics and four overarching themes: Maternal Health and Care Before, During, and After Pregnancy; Newborn Health and Care of the Preterm Baby; Understanding Stress and Interventions to Prevent or Reduce Stress; and Interpersonal and Structural Health Inequities. The questions and topics represent a wide range of research domains, from basic science, translational, clinical, health and social care delivery to policy and economic research. There were many similarities and some unique differences in the questions, topics and priorities across the regions.Conclusions: These findings can be used to design and fund research addressing unanswered questions that matter most to women at high risk for preterm birth. Investigators and funders are strongly encouraged to incorporate women at the front lines of the preterm birth epidemic in research design and funding decisions, and more broadly, to advance methods to deepen healthcare research partnerships with affected communities.
Resumo O modelo de desenvolvimento brasileiro, fortemente baseado na produção de commodities e em indústrias eletrointensivas para trocas nos mercados globais, gera desigualdades sociais e ambientais que desencadeiam diversos conflitos entre povos indígenas e grupos econômicos envolvendo disputas por terra e bens comuns em contextos que influenciam fortemente a situação de saúde dessas comunidades. O objetivo deste artigo é apresentar um panorama dos conflitos socioambientais envolvendo os povos indígenas brasileiros, suas estratégias para garantir o acesso e a qualidade do Subsistema de Atenção à Saúde Indígena (SASI), e alternativas que eles têm proposto para o enfrentamento dos problemas gerados. Esta análise se baseia em um mapeamento de conflitos ambientais baseado na revisão bibliográfica de fontes secundárias (do movimento indígena ou seus parceiros) que subsidiaram a construção de relatos sobre os conflitos e a análise das narrativas indígenas sobre o território onde vivem e suas lutas. A partir da qual concluímos que as estratégias de luta pela saúde dos povos indígenas brasileiros são influenciadas pelas suas disputas socioambientais e são parte das mobilizações desses povos pelo reconhecimento integral de direitos.
This article demonstrates that policy barriers resulting in access to health care inequities were significantly decreased by 2 Promotora interventions for 416 legal and undocumented Latino immigrants in the California Central Valley. Promotoras conducted baseline/follow-up assessments and referrals/phone-calls/visits during a 3-month period. In-depth interviews with Promotoras and a policy analysis on policy-driven access programs were carried out. Access to care was significantly increased between legal and undocumented immigrant from baseline to follow-up. Systemic barriers to access (malos tratos) reflected on personal barriers such as affordability of care. Promotoras help participants overcome barriers but do not change the policies determining access and procedures.
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