Parent's Perspective of Problems Faced during the COVID-19 Pandemic Lockdown on the Care of Children with Epilepsy: A Qualitative Study.

ABSTRACT

Background: COVID-19 has significantly impacted the care of children with chronic illness. There is a paucity of data on issues faced by parents of children with epilepsy (CWE) in an Indian setup. Objectives: The objective was to describe the parental perspective of the problems faced by them on the care of their CWE during the first wave of the COVID-19 pandemic. Materials and Methods: Parents of CWE who physically visited the clinic for their follow-up visit were asked to narrate their experiences about the problems they faced during the first lockdown due to COVID-19. The narratives were audio recorded, and transcripts were analyzed using thematic analysis to arrive at broad themes. Results: Four broad themes were identified transport-related issues, medication-related issues, issues related to doctor consultation, and diagnostic delay. Limited transportation facilities, lack of appropriate social distancing norms in public transport and outpatient units, rigorous frisking by personnel during travel, fear of viral transmission during outpatient visits, nonavailability of antiseizure medications (ASMs) in local markets, lack of discounts by pharmacy, change of brands of ASM, and inability to undergo scheduled diagnostic investigations were some of the major issues raised by parents of CWE. Conclusion: Parents of CWE had trouble in transport to the hospital, inadequate access to ASMs, difficulties in doctor consultation, and delays in diagnostic investigations during the first COVID-19 pandemic lockdown.