Psychological and Economic Burden on Caregivers in State-funded Pediatric Cochlear Implantation in South India – A Pilot Study

Background: Although cochlear implant surgery, along with subsequent speech therapy, is the gold standard for rehabilitating children with severe to profound hearing loss, it is an expensive process. The motivation and involvement of caregivers play a crucial role in achieving successful outcomes following implantation. However, there is a lack of research in India examining the specific challenges faced by caregivers in this context. This pilot study was designed to explore and assess the burden experienced by caregivers of children who have undergone cochlear implantation. Materials and Methods: A pilot observational study was conducted at a tertiary hospital in South India, involving children with bilateral severe to profound hearing loss. The study included children who underwent cochlear implantation and subsequent auditory rehabilitation through the state comprehensive health insurance scheme. Caregivers were interviewed using a semi-structured questionnaire, and their responses were evaluated using the social burden scale and the caregiver burden scale. Results: Twenty cochlear implantees were included in the study. On the social burden scale, 26% of caregivers reported experiencing a severe overall burden, while 71% indicated a moderate burden. According to the caregiver burden scale, most caregivers experienced a mild-to-moderate burden in the emotional domain, whereas the physical, social, and financial domains were associated with low-to-mild levels of burden. Conclusions: Caregivers of cochlear implantees experience a significant degree of emotional and social burden. Therefore, enhancing both financial and psychological support for caregivers is essential. Such improvements will contribute to more effective and comprehensive hearing rehabilitation programs.