Congenital zika syndrome: analysis of parent support networks

This is a qualitative study, conducted at a State Reference Center on Neurodevelopment, in northeastern Brazil, between April 2017 and February 2018. Parents of children with microcephaly treated at the site participated. 18 semi-structured interviews were conducted, three with father and mother and 15 only with mothers, totaling 21 participants. The sample was defined by the saturation criterion and content analysis was used in the thematic modality.

Results

The results are presented from the categories of analysis “informal network” and “formal network”. The informal support network, especially grandparents, exercised important emotional and financial support to parents. Virtual social networks stood out as a space for sharing information and experiences. Regarding the formal support network, the families established stronger bonds with specialized care professionals who offered technical support and care to parents and children. Primary care, on the other, played the role of referral to specialized care. Different degrees of resolution were reported by the municipalities, in terms of programs, the performance of managers and professionals.

Conclusion

Formal and formal networks acted in a complementary way in the treatment and support of children with Congenital Zika Syndrome. The insertion in different indirect networks allowed social support to face the impact caused by the disease. Despite the ministry of health’s investment in primary care, fragility was identified in this level of care.

Family; Parents; Microcephaly; Zika virus infection; Social support

Son of*	Interview with	Mothers’ age	Father age	Income (MW)	Father’s education	Mother’s education	Father occupation	Mother occupation	Marital status	Residence	Religion **	Planned pregnancy	Number of children
Moana	Mother	30	-	1.5	-	EDU	-	Housewife	Married	COU	-	No	4
Marina	Mother	18	31	1	IES	IES	Unemployed	Self-employed	Consensual union	CAP	Evangelical	Yes	2
Mônica	Mother	21	28	1	CHS	CHS	Unemployed	Housewife	Married	CAP	Evangelical	No	3
Melissa	Mother	18	21	2	IHS	IHS	Salesperson	Housewife	Married	COU	Catholic	No	1
Marcela	Couple	35	29	2	CHS	CES	Salesperson	Housewife	Married	COU	Evangelical	No	5
Maria	Couple	21	26	2	CHS	CES	Guard	Housewife	Married	COU	Evangelical	Yes	3
Márcia	Couple	22	28	1	CES	IHE	Unemployed	Student	Consensual union	COU		Yes	1
Mary	Mother	20	22	1.5	CES	CHS	Painter	Housewife	Consensual union	COU	Catholic	No	2
Milena	Mother	31	37	3	CHS	CHE	Merchant	Housewife	Married	COU	No religion	Yes	2
Mariana	Mother	22	24	1.5	CHS	CES	Unemployed	Housewife	Consensual union	CAP	-	No	3
Maísa	Mother	42	37	1	IES	IES	Self-employed	Housewife	Separate	CAP	-	No	9
Michele	Mother	19	24	1.5	IES	CHS	Unemployed	Housewife	Married	COU	Catholic	No	1
Marisa	Mother	32	37	1.5	CHS	CHS	Unemployed	Housewife	Married	CAP	Evangelical	No	2
Mel	Mother	20	22	1	CHS	CHE	Salesperson	Housewife	Consensual union	COU	Evangelical	Yes	3
Matilde	Mother	26	16	2	IHE	CHS	Receptionist	Housewife	Lovers	CAP	Catholic	No	1
Mirian	Mother	39	42	1	IES	CES	Self-employed	Housewife	Widowed	COU	-	Yes	2
Melani	Mother	15	26	3.5	CHS	CHS	Self-employed	Housewife	Consensual union	CAP	Catholic	No	1
Mila	Mother	20	35	1	CHS	CHS	Self-employed	Sealesperson	Consensual union	COU	-	No	1

Son of*	Sex	Age	Place of birth	Diagnosis time	PC (cm)
Moana	F	1y5m	Countryside municipality	At birth	27
Marina	F	1y4m	State capital	Pregnancy	24
Mônica	F	1y5m	State capital	Labor	29
Melissa	F	1y3m	Countryside municipality	At birth	28
Marcela	F	1y7m	Countryside municipality	After birth - 2m	28
Maria	M	1y7m	Countryside municipality	After birth - 15d	27
Márcia	F	1y4m	Countryside municipality	At birth	28
Mary	F	1y4m	State capital	Pregnancy	26
Milena	M	1y4m	Countryside municipality	After birth - 11d	28
Mariana	M	1y6m	State capital	At birth	28
Maísa	F	1y1m	State capital	After birth - 2m	33
Michele	M	11m	Countryside municipality	After birth - 8m	30
Marisa	M	1y9m	State capital	After birth - 7m	29
Mel	F	1y9m	Countryside municipality	Pregnancy	31,5
Matilde	F	1y10m	State capital	After birth - 8m	31
Mirian	M	1y11m	Countryside municipality	After birth	30,5
Melani	F	1y8m	State capital	Pregnancy	26,5
Mila	M	1y11m	State capital	Pregnancy	32

Son of*	Comorbidities	Skull-face disproportion	Biparietal depression	Prominent occipital	Excessive nuchal skin	Congenital clubfoot	Cleft palate/ cleft lip
Moana	Microcephaly, epilepsy, hydrocephalus, adenoid hypertrophy	Yes	Yes	Yes	Yes	Yes	No
Marina	Microcephaly, low vision	Yes	Yes	Yes	Yes	No	No
Mônica	Microcephaly, epilepsy	Yes	Yes	Yes	Yes	Yes	No
Melissa	Microcephaly, epilepsy, low vision	Yes	Yes	Yes	Yes	Yes	No
Marcela	Microcephaly, epilepsy	Yes	Yes	Yes	Yes	No	No
Maria	Microcephaly, epilepsy, protein-calorie malnutrition	Yes	Yes	Yes	Yes	No	No
Márcia	Microcephaly, seizures	Yes	Yes	Yes	No	Yes	No
Mary	Microcephaly, bifid uvula, seizures	Yes	Yes	Yes	Yes	No	No
Milena	Microcephaly, epilepsy	Yes	Yes	Yes	Yes	No	No
Mariana	Microcephaly, pityriasis versicolor, epilepsy	Yes	Yes	Yes	Yes	Yes	No
Maísa	No information	Yes	Yes	Yes	Yes	No	No
Michele	Microcephaly, pityriasis versicolor	Yes	Yes	Yes	No	No	No
Marisa	Microcephaly, cerebral palsy	Yes	No	No	No	No	No
Mel	Microcephaly, seizures, low vision	Yes	Yes	No	No	No	No
Matilde	Microcephaly	Yes	No	No	No	No	No
mirian	Microcephaly, epilepsy, pericardial effusion	Yes	No	No	No	No	No
Melani	Microcephaly, epilepsy, hydrocephalus	Yes	Yes	Yes	Yes	Yes	No
Mila	Microcephaly, epilepsy, low vision	Yes	Yes	Yes	Yes	Yes	No

Escola Paulista de Enfermagem, Universidade Federal de São Paulo R. Napoleão de Barros, 754, 04024-002 São Paulo - SP/Brasil, Tel./Fax: (55 11) 5576 4430 - São Paulo - SP - Brazil
E-mail: actapaulista@unifesp.br

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[1] Corresponding author Marina Uchoa Lopes Pereira E-mail: ulpmarina@gmail.com