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Abstract
Introduction The 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).
Methods This 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.
Results Thirty-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.
Conclusions Although 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.
- infectious diseases
- public health
- developmental neurology & neurodisability
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Footnotes
Contributors VS, MG and EL designed the study. TCC recruited the participants and conducted the interviews. VS, MG, EL and TCC reviewed and refined the data. TCC wrote the article. VS, MG, EL, MG, JST and AGM revised the article. TCC received qualitative research training through participation in a qualitative health research methods course at the Federal University of Rio Grande do Norte/Brazil.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement statement Families were not involved in the design, recruitment or conduct of the study. However, the results will be presented to families, professionals and managers at each participating centre, with a view to discussing strategies to meet the needs of children with CZS and their families.
Patient consent for publication Not required.
Ethics approval This research was approved by the Ethics and Research Committee of the Faculty of Health Sciences of Trairi/Federal University of Rio Grande do Norte (2.357.552), it was also reapproved at Liverpool University Ethics Committee (#2083) and developed in three Brazilian rehabilitation centres for CZS in the states of Rio Grande do Norte (Physical Therapy School Clinic at UFRN-FACISA, in Santa Cruz) and Paraíba (Centre for the Care of Children with Microcephaly at the Professor Joaquim Amorim Neto Research Institute - IPESQ, in Campina Grande, and Physical Therapy School Clinic at UNIPE, in Joao Pessoa).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available on reasonable request from the corresponding author subject to restrictions to preserve anonymity and personal privacy. These data are not publicly available as they contain information that could compromise research participant privacy/consente.
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