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Background: The paucity of state-supported rehabilitation for chronically ill patients with long-term tracheostomies has ramifications of prolonged hospital-stay, increased burden on acute-care resources, and nosocomial infections. Few interventions describe home rehabilitation of adult tracheostomized patients. Almost none involve stakeholders. This paper describes the All-India Institute of Medical Sciences (AIIMS) ICU rehabilitation (AIR) healthcare intervention developed to facilitate home rehabilitation of chronically ill tracheostomized patients. Methods: The AIR intervention development was based on the experience-based codesign theory (EBCD). A core research-committee studied prevalent knowledge and gaps in the area. Patients-carer and health-care stakeholders' experiences of barriers and facilitators to home care resulted in an intervention with interlinked components: family-carer training, equipment bank, m-health application, and follow-up, guided by the Medical Research Council (MRC) framework. Healthcare stakeholders (doctors, nurses, medical equipment vendors) and patient-carer dyads were engaged to gather experiences at various stages to form smaller codesign teams for each component. Multiple codesign meetings iteratively allowed refinement of the intervention over one year. The Template for Intervention Description and Replication (TIDieR) checklist was used to report the AIR intervention. Results: The first component comprised a minimum of three bedside hands-on training sessions for carers relating to tracheostomy suction, catheter care, monitoring oxygenation, enteral feeding, skincare, and physiotherapy, buttressed by pictorial-books and videos embedded in a mobile-application. The second was an equipment-bank involving a rental-retrieval model. The third component was a novel m-health tool for two-way communication with the core group and community of other patient-carers in the project for follow-up and troubleshooting. Home visits on days 7 and 21 post-discharge assessed patient hygiene, nutrition, physiotherapy, and established contact with the nearest primary healthcare facility for the future. Conclusions: Findings support the EBCD-based development using active feedback from stakeholders. Assessment of feasibility, process and effectiveness evaluation will follow.
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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.
