ArticleBMJ open2020
How congenital Zika virus impacted my child's functioning and disability: a Brazilian qualitative study guided by the ICF.
Article in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- My child is growing and now? Exploring the environmental needs of children with congenital Zika syndrome according to their caregivers' perceptions.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Characterizing Disabilities in Preschool Aged Children with Congenital Zika Virus Syndrome with the ICF Model.Viruses · 2022Article
- Neurodevelopment in Children Exposed to ZikaFrontiers in genetics · 2022Review
- Impact of congenital Zika virus and COVID-19 on childhood disability in Latin America.Developmental medicine and child neurology · 2021Article
- Developing a Culturally Sensitive ICF-Based Tool to Describe Functioning of Children with Autism Spectrum Disorder: TEA-CIFunciona Version 1.0 Pilot Study.International journal of environmental research and public health · 2021Article
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionThe Zika virus outbreak in Brazil has had devasting social, medical and financial consequences for families. Both researchers and clinicians are measuring longer-term outcomes to understand the impact of the Zika on child development, functioning and disability. Outcomes and tools used to measure them are very varied and we are unclear how meaningful they are to families and children. This study aimed to identify the parents' perspectives on relevant areas of functioning and disability that should be included as outcome measures for children with congenital Zika syndrome (CZS), as guided by the International Classification of Functioning, Disability and Health (ICF).
methodsThis qualitative study included parents or caregivers of children aged 0-5 years with confirmed CZS from two states in northeastern Brazil. Interviews were conducted using focus groups. Content mapping followed the WHO's ICF linking rules. Three raters analysed the content using NVivo V.11.
resultsThirty-two caregivers participated in six focus groups, 88% were mothers with an average age of 30 years. Most children were male (59%) and all were level V (severe) to on the Gross Motor Function Classification System (GMFCS). Overall, 825 themes were mapped to 36 ICF categories. Although parents mentioned areas across all ICF domains, they reported that areas of mobility, eating and recreation were most relevant for them. In addition, environmental factors were highly identified as barriers, specifically services, policies and access to assistive devices. The most predominant facilitators within the environment were; immediate family support, kind relationships with therapists and support from the extended family.
conclusionsAlthough parents emphasised issues related to mobility, their greatest concerns involved environmental factors, such as access and quality of health and social services, systems and policies. These results reinforce the importance of including parents' perspectives when selecting or developing outcome measures for CZS.
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