Home Care of Tracheostomized Chronically Critically Ill Patients: A Study of Caregivers’ Burden and Comparison with the Burden of Palliative Care Patients in India

INTRODUCTION: Chronically critically ill (CCI) patients often have high costs of care and poor outcomes. Disease management programs offering home care may reduce costs but need buy-in from informal caregivers. An understanding of caregiver burden in this population is lacking. We aimed to study the caregiver burden, its change over time, and factors affecting it, in post-ICU tracheostomized patients. We compared the caregiver burden among CCI carers to that of palliative caregivers. MATERIALS AND METHODS: Informal caregivers of thirty chronically critically ill tracheostomized patients (CGcci) were administered the Caregivers Burden Scale (CBS) tool at discharge, 2 and 4 weeks after discharge. A one-point assessment of burden was made in 30 caregivers of patients enrolled in Pain and Palliative care clinic (CGpc). Linear mixed models for repeated measures were used to analyze score of CGcci over time and compared to the burden in physical, psychologic, economic, time, and social domains between groups. RESULTS: All 60 caregivers were young (33–35 years), predominantly male, and children of the patients. Both CGcci and CGpc had moderate burden score of 60.5 (14.7) vs 61.5 (13), respectively. Physical burden (11.5 vs 8) was greater in CGcci (p = 0.001) compared to psychologic domain (10 vs 12.5) in CGpc (p = 0.01). Burden score over all domains in CGcci decreased rapidly from 67.5 (8) to 55 (16.5) (p = 0.001) in the first month after discharge. CONCLUSION: Burden of care among caregivers of tracheostomized chronically critically ill patients is comparable to those of palliative caregivers and reduces significantly with time. CTRI: 2020/11/029443 (registered on: 27/11/2020) HOW TO CITE THIS ARTICLE: Hansda U, Tripathy S, Sahoo AK, Panda I, Shetty AP, Mitra JK, et al. Home Care of Tracheostomized Chronically Critically Ill Patients: A Study of Caregivers’ Burden and Comparison with the Burden of Palliative Care Patients in India. Indian J Crit Care Med 2022;26(5):579–583.