Stigmas of congenital Zika syndrome: family perspectives

Moreira, Martha Cristina Nunes; Mendes, Corina Helena Figueira; Nascimento, Marcos Antonio Ferreira do; Melo, Ana Paula Lopes de; Albuquerque, Maria do Socorro Veloso de; Kuper, Hannah; Pinto, Márcia; Penn-Kenkana, Loveday; Moreira, Maria Elizabeth Lopes

doi:10.1590/0102-311X00104221

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ARTICLE • Cad. Saúde Pública 38 (4) • 2022 • https://doi.org/10.1590/0102-311X00104221 copy

Stigmas of congenital Zika syndrome: family perspectives

Estigmas da síndrome da Zika congênita: perspectivas das famílias

Estigmas del síndrome Zika congénito: perspectivas familiares

Authorship SCIMAGO INSTITUTIONS RANKINGS

This article uses a socio-anthropological framework to explore the stigmas around interactions with children born with congenital Zika syndrome caused by the Zika virus epidemic in two Brazilian municipalities. Semi-structured interviews were conducted with parents and other relatives. We reflected on the search for meaning when having a baby with unexpected body marks, the moral suffering, the societal ableism, the burden of care, and the need for support networks. We concluded that public policies, especially social policies (health, education, and social assistance), are essential for compensatory mechanisms, recognition, and social inclusion of these children and their families.

Keywords:
Zika Virus; Family; Social Stigma

CHILD	CHILD’S AGE (MONTHS)	CHILD’S GENDER	INTERVIEWEE	INTERVIEWEE AGE (YEARS)	INTERVIEWEE RACE/ETHNICITY	MOTHER’S SCHOOLING LEVEL
C1	20	F	Mother	20	Mixed-race	Incomplete high school
C2	19	F	Mother	36	Mixed-race	Complete high school
C3	20	F	Mother	18	White	Complete high school
C4	19	F	Two adoptive mothers	42 and 19	Mixed-race	Incomplete high school
C5	15	M	Mother	34	Mixed-race	Complete high school
C6	22	F	Mother	W/I	Black	Incomplete high school
C7	22	F	Mother	31	Mixed-race	Incomplete high school
C8	19	M	Mother	39	White	Complete higher education
C9	18	F	Mother	27	Mixed-race	Incomplete high school
C10	22	M	Mother	W/I	White	Incomplete high school
C11	20	M	Mother	23	Mixed-race	Complete high school
C12	19	M	Mother	35	Mixed-race	Complete high school
C13	20	M	Mother	23	Mixed-race	Incomplete elementary school
C14	21	F	Mother	28	Mixed-race	Incomplete high school
C15	22	M	Mother	35	Mixed-race	Complete higher education
C16	23	M	Mother	33	Mixed-race	Incomplete high school
C17	24	M	Father	38	Mixed-race	Incomplete elementary school
C18	20	F	Father	26	W/I	W/I
C19	21	M	Father	33	W/I	Complete high school
C20	20	F	Father	37	White	Complete high school
C21	21	F	Grandfather	47	Mixed-race	Incomplete elementary school
C22	22	F	Father	W/I	White	W/I
C23	23	F	Mother and grandmother	21 and 63	Mixed-race Mixed-race	Incomplete elementary school
C24	24	F	Grandmother	50	Mixed-race	Incomplete elementary school
C25	18	F	Aunt	22	White	Complete high school
C26	Missing	F	Mother	W/I	W/I	W/I
C27	11	F	Mother	42	White	Complete high school
C28	23	M	Aunt	18	White	Complete elementary school

CHILD	CHILD’S AGE (MONTHS)	CHILD’S GENDER	INTERVIEWEE	INTERVIEWEE AGE (YEARS)	INTERVIEWEE RACE/ETHNICITY	MOTHER’S SCHOOLING LEVEL
C1	7	F	Mother	33	White	Complete high-school
C2	15	M	Mother and grandmother	31 and 60	Mixed-race	Incomplete higher education
C3	16	M	Mother	23	White	Complete high school
C4	10	F	Mother	33	White	Complete high-school
C5	18	F	Mother and grandmother	23 and 37	Mixed-race	Incomplete high-school
C6	12	F	Mother	27	Mixed-race	W/I
C7	9	M	Mother and grandmother	23 and 51	Mixed-race	Complete high school
C8	16	M	Mother and father	32 and W/I	White	Complete high school
C9	9	F	Mother and father	23 and 26	White	Complete high school
C10	7	F	Mother	34 and 33	White	Complete elementary school
C11	9	F	Mother	W/I and W/I	Mixed-race	Complete high school
C12	9	F	Mother	34	Mixed-race	Incomplete higher education
C13	5	F	Mother	18	Mixed-race	Complete high school
C14	4	F	Mother	W/I	White	W/I
C15	10	M	Mother	28	White	Incomplete high school
C16	19	F	Grandmother	43	W/I	Incomplete higher education
C17	10	F	Grandmother	47	W/I	W/I
C18	13	M	Father	21	W/I	W/I
C19	21	M	Father	29	W/I	W/I
C20	18	M	Father	29	W/I	Complete high school
C21	15	M	Grandmother	49	W/I	W/I
C22	22	M	Aunt	19	W/I	W/I

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[1] Correspondence
M. C. N. Moreira Departamento de Ensino, Instituto Nacional de Saúde da Mulher, da Criança e do Adolescente Fernandes Figueira, Fundação Oswaldo Cruz. Av. Rui Barbosa 716, Rio de Janeiro, RJ 22250-020, Brasil. marthacnmoreira@gmail.com