Caregiver burden in primary caregivers of pediatric cochlear implantees: a cross-sectional study from a tertiary referral centre in Southern India
DOI:
https://doi.org/10.18203/issn.2454-5929.ijohns20261853Keywords:
Cochlear implant, Caregiver burden, Economic burden, Quality of life, Paediatric cochlear implantation, Financial burdenAbstract
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.
References
Liu Z, Heffernan C, Tan J. Caregiver burden: A concept analysis. Int J Nurs Sci. 2020;7(4):438.
Kumar N, Samantray VR, Syed KA, Magendiran N, John M. Psychological and Economic Burden on Caregivers in State-funded Pediatric Cochlear Implantation in South India – A Pilot Study. Curr Med Issues. 2026;24(2):135.
Hoffmann RL, Mitchell AM. Caregiver burden: historical development. Nurs Forum (Auckl). 1998;33(4):5-11.
Zarit SH, Todd PA, Zarit JM. Subjective burden of husbands and wives as caregivers: a longitudinal study. The Gerontologist. 1986;26(3):260-6.
Aşkın A, Atar E, Şengül İ, Tosun A, Demirdal Ü, Elmalı F. Validity and reliability of the Turkish version of caregiver self-assessment questionnaire. Disabil Rehabil. 2020;42(22):3250-5.
Bertelli S, Ferrara P, Di Modica S, Bergamelli E, Gambini O, D’Agostino A, et al. Adaptation and validation of the Caregiver Burden Inventory in eating disorders. J Eat Disord. 2022;10:34.
Luo W, Liu M, Yao Y, Zeng Y. Measurement Properties of the Caregiver Reaction Assessment Scale: A Systematic Review and Meta-Analysis. Int J Older People Nurs. 2025;20(3):e70024.
Planey AM, Spees LP, Biddell CB, Waters A, Jones EP, Hecht HK, et al. The intersection of travel burdens and financial hardship in cancer care: a scoping review. JNCI Cancer Spectr. 2024;8(5):pkae093.
Young JJ, Yeon KJ. Validity and Reliability of the Korean Version of the Caregiver Burden Questionnaire for Family Caregivers of Hemodialysis Patients. Asian Nurs Res. 2024;18(5):509-15.
Pai S, Kapur RL. The burden on the family of a psychiatric patient: development of an interview schedule. Br J Psychiatry J Ment Sci. 1981;138:332-5.
Domínguez-Vergara J, Santa-Cruz-Espinoza H, Chávez-Ventura G. Zarit Caregiver Burden Interview: Psychometric Properties in Family Caregivers of People with Intellectual Disabilities. Eur J Investig Health Psychol Educ. 2023;13(2):391-402.
Cosetti M, Roland JT. Cochlear Implantation in the Very Young Child: Issues Unique to the Under-1 Population. Trends Amplif. 2010;14(1):46-57.
Bryson GL, Clavel NA, Moga R, Power B, Taljaard M, Nathan HJ. Patient function and caregiver burden after ambulatory surgery: a cohort study of patients older than 65. Can J Anaesth. 2013;60(9):864-73.
Syed IH, Awan WA, Syeda UB. Caregiver Burden among Parents of Hearing Impaired and Intellectually Disabled Children in Pakistan. Iran J Public Health. 2020;49(2):249-56.
Liao C, Lee W, Wang Y, Weng L. Gender Difference in the Caregiving Burden and Psychological Distress of Family Caregivers of Liver Transplant Recipients. Nurs Open. 2026;13(1):e70418.
Schulz R, Sherwood PR. Physical and Mental Health Effects of Family Caregiving. Am J Nurs. 2008;108:23-7.
Sambasivam R, Liu J, Vaingankar JA, Ong HL, Tan M, Fauziana R, et al. The hidden patient: chronic physical morbidity, psychological distress, and quality of life in caregivers of older adults. Psychogeriatrics. 2019;19(1):65-72.
Choy JCP, Lum TYS, Yu DSF, Wong GHY. Application of Family Stress Theory: Predicting Wellbeing by Demands, Resources and Perceptions Among Caregivers of Older Adults. Fam Process. 2025;64(1):e13100.
Al-Shawi YA, Alrawaf FK, Al-Gazlan NS, Al-Qahtani MM, Almuhawas FA. Relationship between proximity to a cochlear implant center and early presentation in children with congenital hearing loss. Saudi Med J. 2020;41(3):314-7.
Quittner AL, Steck JT, Rouiller RL. Cochlear implants in children: a study of parental stress and adjustment. Am J Otol. 1991;12:95-104.
Sharma A, Prinja S, Thakur R, Gupta D, Kaur R, Sharma S, et al. Healthcare Cost of Cochlear Implantation in India. Indian J Otolaryngol Head Neck Surg. 2024;76(2):1716-23.
Downloads
Published
How to Cite
Issue
Section
