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Parent's Perspective of Problems Faced during the COVID-19 Pandemic Lockdown on the Care of Children with Epilepsy: A
Manjeet Singh1, Jaya Shankar Kaushik2, Alka Yadav3
1Medical Undergraduate Student, Department of Neurology, Pt B D Sharma Postgraduate Institute of Medical Sciences, Rohtak, Haryana, India.
Insights
Parents of children with epilepsy faced significant challenges during the COVID-19 pandemic, including transportation issues, medication access, and delayed diagnostics. These difficulties impacted the care of children with epilepsy (CWE) in India.
Area of Science:
- Pediatric Neurology
- Public Health
- Epidemiology
Background:
- COVID-19 pandemic significantly disrupted healthcare for children with chronic illnesses.
- Limited data exists on challenges faced by parents of children with epilepsy (CWE) in India.
Purpose of the Study:
- To explore the parental perspective on problems encountered during the care of CWE.
- To document challenges during the first wave of the COVID-19 pandemic in India.
Main Methods:
- Qualitative study involving parents of CWE who attended clinic follow-ups.
- Audio-recorded narratives of parental experiences during the COVID-19 lockdown.
- Thematic analysis of transcripts to identify key issues.
Main Results:
- Four major themes emerged: transportation, medication access, doctor consultations, and diagnostic delays.
- Parents reported issues with limited transport, social distancing, fear of transmission, ASM unavailability, brand changes, and postponed investigations.
- Specific challenges included non-availability of antiseizure medications (ASMs) and difficulties in accessing healthcare services.
Conclusions:
- Parents of CWE experienced substantial difficulties with hospital transport, ASM access, consultations, and diagnostic procedures.
- The findings highlight critical areas for improving support for CWE and their families during public health crises.
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.
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