Quality of Life of Mothers of Brazilian Children with Congenital Zika Virus Syndrome and Associated Factors

Alidianne Fábia Cabral  Cavalcanti; Yêska Paola Costa  Aguiar; Taynná Dantas  de Arruda; Adriana Suely de Oliveira  Melo; Alessandro Leite  Cavalcanti; Sérgio  d’Ávila

Authors

Alidianne Fábia Cabral Cavalcanti
Yêska Paola Costa Aguiar
Taynná Dantas de Arruda
Adriana Suely de Oliveira Melo
Alessandro Leite Cavalcanti
Sérgio d’Ávila

Keywords:

Disabled Children, Microcephaly, Zika Virus Infection, Child Care, Mothers, Quality of Life

Abstract

Objective: To evaluate the quality of life of mothers of Brazilian children with congenital Zika virus syndrome (CZS) and associated factors. Material and Methods: This cross-sectional study assessed the quality of life (QoL) of 65 mothers of children diagnosed with CZS using the WHOQOL-bref questionnaire. Information related to mothers and children's characteristics and aspects of QoL (physical, psychological, social and environment domains) was collected. Data were presented using descriptive and inferential statistics. Associations between independent variables and quality of life outcome were carried out through bivariate analyses, adopting a 5% significance level. Results: The “physical” domain showed the highest score (65.98 ± 17.62), while the “environment” domain showed the lowest score (48.55 ± 14.75). The quality of life for the physical domain was associated with maternal schooling and child's sex, while the psychological domain was associated with family income and child's sucking difficulty. Conclusion: Socioeconomic characteristics and comorbidities were associated with mothers' QoL. Knowledge of QoL determinants and their impact on different dimensions of life can serve as a guide for interventions aimed at improving the QoL of this population.

References

Costa F, Sarno M, Khouri R, de Paula Freitas B, Siqueira I, Ribeiro GS, et al. Emergence of congenital Zika syndrome: viewpoint from the front lines. Ann Intern Med 2016; 164(10):689-91. https://doi.org/10.7326/M16-0332

Brasil P, Pereira JP Jr, Moreira ME, Ribeiro Nogueira RM, Damasceno L, Wakimoto M, et al. Zika virus infection in pregnant women in Rio de Janeiro. N Engl J Med 2016; 375(24):2321-34. https://doi.org/10.1056/NEJMoa1602412

Soares de Souza A, Moraes Dias C, Braga FD, Terzian AC, Estofolete CF, Oliani AH, et al. Fetal infection by zika virus in the third trimester: report of 2 cases. Clin Infect Dis 2016; 63(12):1622-5. https://doi.org/10.1093/cid/ciw613

Wheeler AC. Development of infants with congenital Zika syndrome: What do we know and what can we expect? Pediatrics 2018; 141(Suppl 2):S154-S160. https://doi.org/10.1542/peds.2017-2038D

Bhatnagar J, Rabeneck DB, Martines RB, Reagan-Steiner S, Ermias Y, Estetter LB, et al. Zika virus RNA replication and persistence in brain and placental tissue. Emerg Infect Dis 2017; 23(3):405-14. https://doi.org/10.3201/eid2303.161499

van der Linden V, Pessoa A, Dobyns W, Barkovich AJ, Júnior HV, Filho EL, et al. Description of 13 infants born during October 2015-January 2016 with congenital Zika virus infection without microcephaly at birth - Brazil. MMWR Morb Mortal Wkly Rep 2016; 65(47):1343-8. https://doi.org/10.15585/mmwr.mm6547e2

Pessoa A, van der Linden V, Yeargin-Allsopp M, Carvalho MDCG, Ribeiro EM, Braun KVN, et al. Motor abnormalities and epilepsy in infants and children with evidence of congenital Zika virus infection. Pediatrics 2018; 141(Suppl 2):S167-S179. https://doi.org/10.1542/peds.2017-2038f

Brasil. Ministério da Saúde. Secretaria de Atenção à Saúde. Protocolo de Atenção à Saúde e Resposta à Ocorrência de Microcefalia. Plano Nacional de Enfrentamento à Microcefalia. Brasília: Ministério da Saúde; 2016. [In Portuguese].

van der Linden V, Filho EL, Lins OG, van der Linden A, Aragão Mde F, Brainer-Lima AM, et al. Congenital Zika syndrome with arthrogryposis: retrospective case series study. BMJ 2016; 354:i3899. https://doi.org/10.1136/bmj.i3899.

Moura da Silva AA, Ganz JS, Sousa PD, Doriqui MJ, Ribeiro MR, Branco MD, et al. Early Growth and Neurologic Outcomes of Infants with Probable Congenital Zika Virus Syndrome. Emerg Infect Dis 2016; 22(11):1953-1956. https://doi.org/10.3201/eid2211.160956.

Moore CA, Staples JE, Dobyns WB, Pessoa A, Ventura CV, Fonseca EB, et al. Characterizing the Pattern of Anomalies in Congenital Zika Syndrome for Pediatric Clinicians. JAMA Pediatr 2017; 171(3):288-295. https://doi.org/10.1001/jamapediatrics.2016.3982.

Carvalho MDCG, Miranda-Filho DB, van der Linden V, Sobral PF, Ramos RCF, Rocha MÂW, et al. Sleep EEG patterns in infants with congenital Zika virus syndrome. Clin Neurophysiol 2017; 128(1):204-14. https://doi.org/10.1016/j.clinph.2016.11.004

Siqueira RMP, Santos MTBR, Cabral GMP. Alterations in the primary teeth of children with microcephaly in Northeast Brazil: a comparative study. Int J Paediatr Dent 2018; 2018. https://doi.org/10.1111/ipd.12402

Bailey DB, Ventura LO. The Likely Impact of congenital Zika syndrome on families: considerations for family supports and services. Pediatrics 2018; 141(Suppl 2):S180-S187. https://doi.org/10.1542/peds.2017-2038G

Instituto Brasileiro de Geografia e Estatística (IBGE). Brasil/ Paraíba/ Campina Grande. 2018. Available from: https://cidades.ibge.gov.br/brasil/pb/campina-grande/pesquisa/37/30255 [Accessed on September 23, 2018]. [In Portuguese].

Grover S, Dutt A. Perceived burden and quality of life of caregivers in obsessive-compulsive disorder. Psychiatry Clin Neurosci 2011; 65(5):416-22. https://doi.org/10.1111/j.1440-1819.2011.02240.x

The WHOQOL Group. Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment. Psychol Med 1998; 28(3):551-8. https://doi.org/10.1017/s003329179800666

Fleck MP, Louzada S, Xavier M, Chachamovich E, Vieira G, Santos L, et al. Application of the Portuguese version of the abbreviated instrument of quality life WHOQOL-bref. Rev Saúde Pública 2000; 34(2):178-83. https://doi.org/10.1590/s0034-89102000000200012

Nishida T, Tanaka Y, Sakakibara H. Factors associated with quality of life among mothers rearing 4- and 18-month old infants in Japan. Matern Child Health J 2018; 22(8):1217-25. https://doi.org/10.1007/s10995-018-2493-2

Tekinarslan IC. A comparison study of depression and quality of life in Turkish mothers of children with Down syndrome, cerebral palsy, and autism spectrum disorder. Psychol Rep 2013; 112(1):266-87. https://doi.org/10.2466/21.02.15.PR0.112.1.266-287

Queiroz BM, Alencar NA, Requejo MEP, Antonio AG, Maia LC. Risk factors, perception of caregivers and impact of early childhood caries on quality of life related to oral health. Pesqui Bras Odontopediatria Clín Integr 2015; 15(1):85-94. https://doi.org/10.4034/PBOCI.2015.151.10

Vanz, AP, Félix TM, Rocha NS, Schwartz IV. Quality of life in caregivers of children and adolescents with Osteogenesis Imperfecta. Health Qual Life Outcomes 2015; 13:41. https://doi.org/10.1186/s12955-015-0226-4

Carneiro TV, Lucena RB, Ribeiro ILA, Agripino GG, Valença AMG, da Rosa MRD. Quality of life of paediatric oncology patients. Pesqui Bras Odontopediatria Clín Integr 2016; 16(1):457-67. https://doi.org/10.4034/PBOCI.2016.161.48

Tseng MH, Chen KL, Shieh JY, Lu L, Huang CY, Simeonsson RJ. Child characteristics, caregiver characteristics, and environmental factors affecting the quality of life of caregivers of children with cerebral palsy. Disabil Rehabil 2016; 38(24):2374-82. https://doi.org/10.3109/09638288.2015.1129451

Ramires CMN, Branco-Barreiro FCA, Peluso ETP. Quality of life related factors for parents of children with hearing loss. Ciênc Saúde Coletiva 2016; 21(10):3245-52. https://doi.org/10.1590/1413-812320152110.224720

Moura MR, Araújo CG, Prado MM, Paro HB, Pinto RM, Abdallah VO, et al. Factors associated with the quality of life of mothers of preterm infants with very low birth weight: a 3-year follow-up study. Qual Life Res 2017; 26(5):1349-60. https://doi.org/10.1007/s11136-016-1456-6

Dos Santos Oliveira SJG, de Melo ES, Reinheimer DM, Gurgel RQ, Santos VS, Martins-Filho PRS. Anxiety, depression, and quality of life in mothers of newborns with microcephaly and presumed congenital Zika virus infection. Arch Womens Ment Health 2016; 19(6):1149-51. https://doi.org/10.1007/s00737-016-0654-0

Dos Santos Oliveira SJG, Dos Reis CL, Cipolotti R, Gurgel RQ, Santos VS, Martins-Filho PRS. Anxiety, depression, and quality of life in mothers of newborns with microcephaly and presumed congenital Zika virus infection: a follow-up study during the first year after birth. Arch Womens Ment Health 2017; 20(3):473-5. https://doi.org/10.1007/s00737-017-0724-y

Carona C, Silva N, Crespo C, Canavarro MC. Caregiving burden and parent-child quality of life outcomes in neurodevelopmental conditions: the mediating role of behavioral disengagement. J Clin Psychol Med Settings 2014; 21(4):320-8. https://doi.org/10.1007/s10880-014-9412-5

Khanna AK, Prabhakaran A, Patel P, Ganjiwale JD, Nimbalkar SM. Social, psychological and financial burden on caregivers of children with chronic illness: a cross-sectional study. Indian J Pediatr 2015; 82(11):1006-11. https://doi.org/10.1007/s12098-015-1762-y

Beckung E, Carlsson G, Carlsdotter S, Uvebrant P. The natural history of gross motor development in children with cerebral palsy aged 1 to 15 years. Dev Med Child Neurol 2007; 49(10):751-6. https://doi.org/10.1111/j.1469-8749.2007.00751.x

Cavalcanti AL. Challenges of dental care for children with microcephaly carrying Zika congenital syndrome. Contemp Clin Dent 2017; 8(3):345-6. https://doi.org/10.4103/0976-237X.214553

Medeiros MMD, Martins ML, Gomes LN, Cardoso AMR, Padilha WWN, Cavalcanti AL. Factors associated with the caregivers' perception of the oral health of individuals with cerebral palsy. Pesqui Bras Odontopediatria Clín Integr 2019; 19:e4824. https://doi.org/10.4034/PBOCI.2019.191.139

Tehee E, Honan R, Hevey D. Factors contributing to stress in parents of individuals with autistic spectrum disorders. J Appl Res Intellect Disabil 2009; 22(1):34-42. https://doi.org/10.1111/j.1468-3148.2008.00437.x

Kandel I, Morad M, Vardi G, Press J, Merrick J. The Arab community in Israel coping with intellectual and developmental disability. Sci World J 2004; 4:324-32. https://doi.org/10.1100/tsw.2004.31

Brasil. Ministério do Desenvolvimento Social e Agrário. Portaria nº 58, de 3 de junho de 2016. Dispõe sobre ações articuladas das redes de Assistência Social e Previdência Social na atenção às crianças com microcefalia para o acesso ao Benefício de Prestação Continuada da Assistência Social - BPC. Diário Oficial da União 2016. [In Portuguese].

Brasil. Lei nº 13.985, de 7 de Abril de 2020. Institui pensão especial destinada a crianças com Síndrome Congênita do Zika Vírus, nascidas entre 1º de janeiro de 2015 e 31 de dezembro de 2019, beneficiárias do Benefício de Prestação Continuada (BPC). [In Portuguese].