Banca de QUALIFICAÇÃO: Jaqueline Cardoso Durães

Uma banca de QUALIFICAÇÃO de DOUTORADO foi cadastrada pelo programa.
STUDENT : Jaqueline Cardoso Durães
DATE: 23/02/2026
TIME: 14:30
LOCAL: SOL - registro periodo de greve
TITLE:

"Mindt hat hurts",body that thinks, soul that suffers: love, struggle/ mourning, and pain in the walking of FENAFAL

KEY WORDS:

sickle cell disease; sociology of health; health of black people; patient associations.

PAGES: 96
BIG AREA: Ciências Humanas
AREA: Sociologia
SUBÁREA: Sociologia da Saúde
SUMMARY:

This research aims to analyze theimportance and protagonism of the National Federation of Associations of People with Sickle Cell Disease (FENAFAL ) in the development of public policies focused on sickle cell disease. The guiding hypothesis suggests that FENAFAL, similarly to black movements, has played a central role in the formulation of national public policies,whose implementation impacts state-level associations and, more broadly, influences the international scenario. The general objective is to understand the process of establishing FENAFAL as a collective that promotes and ensures specific public policies for sickle cell disease. To achieve this, the following specific objectives are set:to record, describe, and analyze FENAFAL's struggle for the guarantee of rights and quality of life for people with sickle cell disease; to construct a chronological timeline of the federation's activities between 2001 and 2025, highlighting its organization, partnerships, and strategies for advocacy with government bodies; to investigate how the categories of race and racism emerge in the federation's discourse and actions, as well as their impact on the affiliated associations;and to verify how the categories of mourning, struggle, pain, and love are mobilized in the federation's discourse. Additionally, the research seeks to identify discursive productions among the members that make up the federation and the associations. The research will be qualitative, involving participant observation, documentary analysis, and semi-structured interviews to be conducted with FENAFAL leaders,associationsfromBahia,Paraná,andtheFederalDistrict(DF),aswellasmembers of these collectives. The first chapter's objective is to engage in a dialogue with the field of sociology of health, seeking to understand its origins, development, and contemporary configuration, as well as the interfaces between the sociology of health and the category race, investigating the presence (or absence) of this dimension in the field. The second chapter,titled"Health ofthe Black Population in Brazil: A Historical Overview," aimsto analyze how the health of the black population has historically organized itself in the country, highlighting continuities, ruptures, and tensions in relation to the state and understanding the origins and development of the research field known as Black Population Health. The third chapter, "Sickle Cell Disease, the Black Movement, and Patient Associations, "investigates the interactions between the black movement, health, and sickle cell disease collectives, deepening thed iscussion about the field of patient associations studies.The last two chapters will focus on the description of the methodological     procedures, fieldwork, and     analysis       of      the     information obtained, consolidating the empirical and theoretical contributions of the study

COMMITTEE MEMBERS:
Externa à Instituição - Carmen Verissima Ferreira Halder - UNICAMP
Interno - 1642428 - FABRICIO MONTEIRO NEVES
Interna - ***.178.428-** - JACQUELINE MORAES TEIXEIRA - USP
Presidente - 1276976 - JOAZE BERNARDINO COSTA
Externa à Instituição - ROSANA MARIA NASCIMENTO CASTRO SILVA - UERJ