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Ethics in biomedical research in mental health plays a central role. Historically the principles of autonomy, beneficence, non-maleficence and justice have been violated in individuals with mental disorders. This article aims to analyse the perceptions of individuals involved in research ethics advocacy in Aranzazu-Colombia, from the Declaration of the Town Square to current research practices and community empowerment initiatives. For this, a qualitative study was conducted in the municipality of Aranzazu as part of a Community-Based Rehabilitation strategy in Mental Health. Two focus groups were conducted with a total of 30 participants, including community representatives, institutional members, and healthcare personnel. The themes that emerged were ‘The urgency of speaking as one’, ‘Our research questions’ and ‘Human rights for recovery’. The process of adoption of community protection measures that guided the investigative processes with the town of Aranzazu is presented. A discussion is raised around the instrumentalization of people in the investigation and the claim of human rights by communities, as a mechanism to strengthen community recovery actions. It is concluded that mental health research should help to affirm dignity, reduce stigma, improve access to psychosocial recovery and achieve real participation in building the well-being of communities.
Ethics in biomedical research in mental health plays a central role. Historically the principles of autonomy, beneficence, non-maleficence and justice have been violated in individuals with mental disorders. This article aims to analyse the perceptions of individuals involved in research ethics advocacy in Aranzazu-Colombia, from the Declaration of the Town Square to current research practices and community empowerment initiatives. For this, a qualitative study was conducted in the municipality of Aranzazu as part of a Community-Based Rehabilitation strategy in Mental Health. Two focus groups were conducted with a total of 30 participants, including community representatives, institutional members, and healthcare personnel. The themes that emerged were ‘The urgency of speaking as one’, ‘Our research questions’ and ‘Human rights for recovery’. The process of adoption of community protection measures that guided the investigative processes with the town of Aranzazu is presented. A discussion is raised around the instrumentalization of people in the investigation and the claim of human rights by communities, as a mechanism to strengthen community recovery actions. It is concluded that mental health research should help to affirm dignity, reduce stigma, improve access to psychosocial recovery and achieve real participation in building the well-being of communities.
Background Refugees often face psychosocial complexity and multi-dimensional healthcare needs. Community-Based Participatory Research (CBPR) methods have been previously employed in designing health programs for refugee communities and in building strong research partnerships in refugee communities. However, the extent to which these communities are involved remains unknown. Objective To review the evidence on the involvement of refugees in CBPR processes to inform healthcare research. Methods A scoping review was performed, using Arksey & O’Malley’s methodological framework. A literature search in Medline, PubMed, PsycINFO, CINAHL, Embase, Global Health, Scopus, and Policy File Index for articles published until August 2020 was conducted. Articles were included if they focused on CBPR, had refugee involvement, and discussed healthcare/health policy. Results 4125 articles were identified in the database searches. After removal of duplicates, 2077 articles underwent title and abstract review by two authors, yielding an inter-reviewer kappa-statistic of 0.85. 14 studies were included in the final analysis. The purpose of CBPR use for 6 (42.9%) of the articles was developing and implementing mental health/social support interventions, 5 (35.7%) focused on sexual and reproductive health interventions, 1 (7.1%) focused on domestic violence interventions, 1 (7.1%) focused on cardiovascular disease prevention and 1 (7.1%) focused on parenting interventions. In terms of refugee involvement in the various stages in the research process, 9 (64.3%) articles reported refugees having a role in the inception of the research, no articles reported including refugees in obtaining funding, all articles included refugees in the design of the research study, 10 (71.4%) articles reported having refugees involved in community engagement/recruitment, 8 (57.1%) articles reported involvement throughout the data collection process, 4 (28.6%) articles reported involvement in data analysis, 6 (42.9%) articles reported having refugees involved in knowledge translation/dissemination and 1 article (7.1%) reported having refugees contribute to scale up initiatives. Conclusions CBPR has been identified as a methodology with the potential to make substantial contributions to improving health and well-being in traditionally disenfranchised populations. As the needs of refugee communities are so diverse, efforts should be made to include refugees as partners in all stages of the research process.
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