How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF
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...
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BMJ Publishing Group
2020-12-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/10/12/e038228.full |
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| author | Melissa Gladstone Taynah Neri Correia Campos Veronica Schiariti Adriana Melo Jousilene Sales Tavares Adriana Gomes Magalhães Egmar Longo |
| author_facet | Melissa Gladstone Taynah Neri Correia Campos Veronica Schiariti Adriana Melo Jousilene Sales Tavares Adriana Gomes Magalhães Egmar Longo |
| author_sort | Melissa Gladstone |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-ebb422e1a2e04f269cdcb8899235fbf8 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2020-12-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-ebb422e1a2e04f269cdcb8899235fbf82024-11-22T02:30:08ZengBMJ Publishing GroupBMJ Open2044-60552020-12-01101210.1136/bmjopen-2020-038228How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICFMelissa Gladstone0Taynah Neri Correia Campos1Veronica Schiariti2Adriana Melo3Jousilene Sales Tavares4Adriana Gomes Magalhães5Egmar Longo6Department of Women and Children’s Health, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UKGraduate Program in Collective, HealthFederal University of Rio Grande do Norte – UFRN-FACISA, Natal, BrazilDivision of Medical Sciences, University of Victoria, Victoria, British Columbia, CanadaInstituto de Pesquisa Joaquim Amorim Neto, Campina Grande, BrazilInstituto de Pesquisa Joaquim Amorim Neto, Campina Grande, BrazilHealth of Women, Graduate Program in Rehabilitation Sciences, Federal University of Rio Grande do Norte – UFRN-FACISA, Santa Cruz, BrazilGraduate Program in Rehabilitation Sciences and in Collective Health, Faculty of Health Sciences of Trairi, Federal University of Rio Grande do Norte (UFRN-FACISA), Santa Cruz, Rio Grande do Norte, BrazilIntroduction 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.https://bmjopen.bmj.com/content/10/12/e038228.full |
| spellingShingle | Melissa Gladstone Taynah Neri Correia Campos Veronica Schiariti Adriana Melo Jousilene Sales Tavares Adriana Gomes Magalhães Egmar Longo How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF BMJ Open |
| title | How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF |
| title_full | How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF |
| title_fullStr | How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF |
| title_full_unstemmed | How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF |
| title_short | How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF |
| title_sort | how congenital zika virus impacted my child s functioning and disability a brazilian qualitative study guided by the icf |
| url | https://bmjopen.bmj.com/content/10/12/e038228.full |
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