Indispensable yet invisible: A qualitative study of the roles of carers in infection prevention in a South Indian hospital

Objectives: We investigated the roles of patient carers in infection-related care on surgical wards in a South Indian hospital from the perspective of healthcare workers (HCWs), patients, and their carers. Methods: Ethnographic study included ward-round observations (138 hours) and face-to-face interviews (44 HCWs, 6 patients/carers). Data (field notes, interview transcripts) were coded in NVivo 12 and thematically analyzed. Data collection and analysis were iterative, recursive, and continued until thematic saturation. Results: Carers have important, unrecognized roles. At the study site, institutional expectations are formalized in policies, demanding a carer to always accompany in-patients. Such intense presence embeds families in the patient care environment, as demonstrated by their high engagement in direct personal (bathing patients) and clinical care (wound care). Carers actively participate in discussions on patient progress with HCWs, including therapeutic options. There is a misalignment between how carers are positioned by the organization (through policy mandates, institutional practices, and HCWs expectations), and the role that they play in practice, resulting in their role, though indispensable, remaining unrecognized. Conclusion: Current models of patient and carer involvement in infection prevention and control are poorly aligned with sociocultural and contextual aspects of care. Culture-sensitive infection prevention and control policies which embrace the roles that carers play are urgently needed. (c) 2022 The Authors. Published by Elsevier Ltd on behalf of International Society for Infectious Diseases. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/)

Automated summary

This study investigates the roles of patient carers in infection-related care on surgical wards in a South Indian hospital. The findings reveal that carers play important but unrecognized roles in patient care, actively participating in personal and clinical care activities. However, there is a misalignment between their actual roles and how they are positioned by the organization and healthcare workers.