Publication:

Caregiver burden in primary caregivers of pediatric cochlear implantees: a cross-sectional study from a tertiary referral centre in Southern India

Background Caregiving for paediatric cochlear implantees (CI) is challenging, underreported and has not been quantified. This study has implications for improving support systems for the primary caregivers of paediatric cochlear implantees.

Methods The analysis was done using the Zarit burden inventory (ZBI), the Oh and Seo family caregiver burden scale (FCBS) and the Pai and Kapur family burden interview schedule (FBIS), and the burden of care was correlated with socio- economic-demographic factors. 119 implanted children during the period 2018-2025 and their caregivers were recruited. All patients had undergone at least three months of auditory-verbal rehabilitation therapy (AVT).

Results The mean age at implantation was 3years. All the primary caregivers were female. 83% of the primary caregivers were the mothers of the implantees. 21.8% of the respondents had additional responsibility in the form of another sick person at home. The mean duration of AVT was 11.94 months. The mean distance of the AVT centre from the patients’ homes was 42 km. The age of CI was statistically significant for financial burden in the FCBS. The distance of the AVT centre contributed to a statistically significant emotional burden. Caregiving was significantly easier for children for whom at least 3 years had elapsed since surgery. The ZBI screening tool correlated well with the FCBS and the FBIS for documenting burden.

Conclusions Caregivers burden (CB) is significant economically and when it involves younger children, recent surgery and travel for AVT. Women bear all caregiving responsibilities at home. The ZBI can be used as a rapid screening tool for CB.