Sickle Cell Disease in Bahia, Brazil: The Social Production of Health Policies and Institutional Neglect

A disease is considered neglected when it is not given due priority in health policies despite the social relevance of that disease, either in terms of the number of individuals affected by it or its morbidity or mortality. Although the causes are structural, neglect in health does not occur in a vacuum. In this paper, we explore how sickle cell disease (SCD) is constructed and neglected in Brazil, based on insights from our long-term participatory qualitative research in the state of Bahia. We present five overarching themes relevant to the social production of SCD, and associated health policies in Brazil: (1) The achievements and setbacks to overcome neglect in SCD, (2) Continuity of comprehensive SCD care; (3) Social movements of people with SCD; (4) Biocultural citizenship; and (5) Academic advocacy. We conclude that it is insufficient to merely recognize the health inequities that differentiate white and black populations in Brazil; racism must be understood as both a producer and a reproducer of this process of neglect. We conclude with a set of recommendations for the main SCD stakeholder groups committed to improving the lives of people living with SCD

Community engagement in Cutaneous Leishmaniasis research in Brazil, Ethiopia, and Sri Lanka: A decolonial approach for global health.

Cutaneous leishmaniasis (CL) is a parasitic skin disease endemic in at least 88 countries where it presents an urgent, albeit often "neglected" public health problem. In this paper, we discuss our model of decolonial community engagement in the ECLIPSE global health research program, which aims to improve physical and mental health outcomes for people with CL. The ECLIPSE program has four interlinked phases and underpinning each of these phases is sustained and robust community engagement and involvement that guides and informs all activities in ECLIPSE. Our decolonial approach implies that the model for community engagement will be different in Brazil, Ethiopia and Sri Lanka. Indeed, we adopt a critical anthropological approach to engaging with community members and it is precisely this approach we evaluate in this paper. The data and material we draw on were collected through qualitative research methods during community engagement activities. We established 13 Community Advisory Groups (CAGs): in Brazil ( = 4), Ethiopia ( = 6), and Sri Lanka ( = 3). We identified four overarching themes during a thematic analysis of the data set: (1) Establishing community advisory groups, (2) CAG membership and community representation, (3) Culturally appropriate and context-bespoke engagement, and (4) Relationships between researchers and community members. During our first period of ECLIPSE community engagement, we have debunked myths (for instance about communities being "disempowered"), critiqued our own practices (changing approaches in bringing together CAG members) and celebrated successes (notably fruitful online engagement during a challenging COVID-19 pandemic context). Our evaluation revealed a gap between the exemplary community engagement frameworks available in the literature and the messy, everyday reality of working in communities. In the ECLIPSE program, we have translated ideal(istic) principles espoused by such community engagement guidance into the practical realities of "doing engagement" in low-resourced communities. Our community engagement was underpinned by such ideal principles, but adapted to local sociocultural contexts, working within certain funding and regulatory constraints imposed on researchers. We conclude with a set of lessons learned and recommendations for the conduct of decolonial community engagement in global health research. [Abstract copyright: Copyright © 2022 Polidano, Parton, Agampodi, Agampodi, Haileselassie, Lalani, Mota, Price, Rodrigues, Tafere, Trad, Zerihun and Dikomitis.

Community engagement in cutaneous leishmaniasis research in Brazil, Ethiopia, and Sri Lanka : a Decolonial approach for global health

Cutaneous leishmaniasis (CL) is a parasitic skin disease endemic in at least 88 countries where it presents an urgent, albeit often “neglected” public health problem. In this paper, we discuss ourmodel of decolonial community engagement in the ECLIPSE global health research program, which aims to improve physical and mental health outcomes for people with CL. The ECLIPSE program has four interlinked phases and underpinning each of these phases is sustained and robust community engagement and involvement that guides and informs all activities in ECLIPSE. Our decolonial approach implies that the model for community engagement will be different in Brazil, Ethiopia and Sri Lanka. Indeed, we adopt a critical anthropological approach to engaging with community members and it is precisely this approach we evaluate in this paper. The data andmaterial we draw on were collected through qualitative research methods during community engagement activities. We established 13 Community Advisory Groups (CAGs): in Brazil (n = 4), Ethiopia (n = 6), and Sri Lanka (n = 3). We identified four overarching themes during a thematic analysis of the data set: (1) Establishing community advisory groups, (2) CAG membership and community representation, (3) Culturally appropriate and context-bespoke engagement, and (4) Relationships between researchers and community members. During our first period of ECLIPSE community engagement, we have debunked myths (for instance about communities being “disempowered”), critiqued our own practices (changing approaches in bringing together CAG members) and celebrated successes (notably fruitful online engagement during a challenging COVID-19 pandemic context). Our evaluation revealed a gap between the exemplary community engagement frameworks available in the literature and the messy, everyday reality of working in communities. In the ECLIPSE program, we have translated ideal(istic) principles espoused by such community engagement guidance into the practical realities of “doing engagement” in low-resourced communities. Our community engagement was underpinned by such ideal principles, but adapted to local sociocultural contexts, working within certain funding and regulatory constraints imposed on researchers. We conclude with a set of lessons learned and recommendations for the conduct of decolonial community engagement in global health research.peer-reviewe

Sickle Cell Disease in Bahia, Brazil: The Social Production of Health Policies and Institutional Neglect

A disease is considered neglected when it is not given due priority in health policies despite the social relevance of that disease, either in terms of the number of individuals affected by it or its morbidity or mortality. Although the causes are structural, neglect in health does not occur in a vacuum. In this paper, we explore how sickle cell disease (SCD) is constructed and neglected in Brazil, based on insights from our long-term participatory qualitative research in the state of Bahia. We present five overarching themes relevant to the social production of SCD, and associated health policies in Brazil: (1) The achievements and setbacks to overcome neglect in SCD, (2) Continuity of comprehensive SCD care; (3) Social movements of people with SCD; (4) Biocultural citizenship; and (5) Academic advocacy. We conclude that it is insufficient to merely recognize the health inequities that differentiate white and black populations in Brazil; racism must be understood as both a producer and a reproducer of this process of neglect. We conclude with a set of recommendations for the main SCD stakeholder groups committed to improving the lives of people living with SCD