Abstract
Exploring data on primary caregiver experiences of dealing with chronically ill children (CIC) strengthens the ability of paediatricians to improve the quality of care by detecting unmet needs in paediatric palliative care and understanding their original concerns instead of presumed needs. Hence, this study aims to identify and describe the primary concerns and challenges faced by caregivers of children with complex chronic conditions in a tertiary care hospital in Kerala. Primary caregivers of 25 children aged <13 years with non-malignant life-limiting illnesses, admitted to the paediatric department of a government medical college in Kerala between 1 July 2021 and 28 February 2022, underwent in-depth interviews to analyse their most worrisome issues. Thematic analysis was the method chosen for qualitative data analysis. The main themes identified were medical issues, unmet needs, caregiver health issues, and social and financial issues. Among the medical issues, poor seizure control and infected bedsores, sleep deprivation in both patient as well as caregivers, and difficulty in maintaining the personal hygiene of patients were the major issues. Parents of almost all the CICs reported that they required diapers more than any other material or device. Maternal depression was the major caregiver health issue. The unavailability of antiepileptic drugs in peripheral health centres resulted in missing doses and undue expenses for travel to tertiary centres to obtain the same. Caregivers reported their dismay when they finally realised that they were given false hopes of a cure by different systems of medicine. The challenges faced by caregivers of children with complex chronic conditions are multifaceted. Their most problematic issues related to medical issues are the occurrence of breakthrough seizures and development of infected bedsores. The most important material hardship reported was diaper needs. Caregiver issues such as sleep deprivation and maternal depression must be identified and addressed while providing comprehensive palliative care.
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