'It was just a normal day!' Caregiver perspectives of the impact of the COVID-19 pandemic on children living with disabilities in South Africa.

BACKGROUND

Children with disabilities were unlikely to be included in response strategies during the COVID-19 pandemic in the poorest countries that prioritise medical models. We aimed to understand the impact of COVID-19 on these children and their families in South Africa, through the lens of the WHO International Classification of Functioning, Disability and Health (ICF) framework, to advance service delivery that could make a difference to their lives.

METHODS

Caregivers of children with developmental disabilities from an online parent network (n=400), initiated by Shonaquip Social Enterprise during the COVID-19 pandemic, were invited to participate in an online survey in October 2021, to understand their experiences. A quantitative analysis was conducted using Stata Statistical Software. NVivo 14, QSR International, enabled an iterative thematic analysis, using the ICF Framework.

RESULTS

Out of 400 parents surveyed, 68 (17%) responded. They reported declines in child health (n=11, 16%), contracting COVID-19 infections (n=6, 9%) and demise (n=2, 3%) alongside food insecurity (n=42, 62%), income losses (n=17, 26%) and restricted educational access (n=22, 32%) during the pandemic. Caregiving was described as 'very stressful' (n=33, 49%) and some needed substances to cope (n=5, 7%). Parents expressed that services for children with disabilities were not prioritised during the pandemic. Although the parent network empowered resilience, strong themes of isolation were equivalent to their pre-pandemic experiences.

CONCLUSION

By collaborating with community organisations, and leveraging technology, we reached vulnerable populations during the pandemic in South Africa. By contextualising the ICF framework and 'F-Words', we exposed the challenges of families which may be compared with a crisis in low- and middle-income countries, beyond a pandemic. Whereas COVID-19 forced us to reimagine addressing these needs, this is a call to relisten and rebuild systems around children with disabilities. Bridging research to practice gaps and strengthening family resilience should be 'just a normal day'.