Power of their stories: faces of kernicterus – experience and perception of caregivers and their children in Northern Nigeria

Background Our qualitative study was conducted to explore real-life experiences and challenges of caregivers and individuals with kernicterus spectrum disorder (KSD) in Northern Nigeria, where it remains a significant cause of neurological impairment. The lived experiences of affected individuals and their caregivers are largely undocumented. These stories of caregivers living with children with KSD and survivors with KSD highlight challenges and obstacles they face beyond bilirubin levels and quantitative measures. Methods We conducted focus group discussions (FGDs; n=7), caregivers (n=54 or 6–8 per FGD) and case studies (n=4 individuals with KSD). Data were analysed using thematic analysis at three teaching hospitals in Northern Nigeria, all members of the Stop Kernicterus and Infection in Northern Nigeria+ collaborative. Caregivers with a child who had acute bilirubin encephalopathy and now has KSD and those living with KSD were interviewed. Results Key features identified among caregivers were remarkably limited awareness of neonatal jaundice (NNJ) and its consequences, as well as reliance on traditional remedies, resulting in delays accessing care and pervasive stigma. Caregivers reported significant physical, long-term emotional and financial burdens, while individuals with KSD faced real-life challenges with mobility, communication and social inclusion. Despite these obstacles, participants demonstrated incredible resilience and inspiring aspirations. Conclusions Our study highlights the lives and stories of caregivers and individuals affected by KSD and the urgent need for public health interventions that could prevent KSD through timely access to screening, diagnosis and treatment of NNJ. For those individuals who do progress to KSD, we need not only improved care and support for caregivers but also to value their stories, insisting they not be victimised but given every opportunity to achieve their dreams and full potential.