Hogan, Unarose and Bingley, Amanda and Morbey, Hazel and Walshe, Catherine (2024) Understanding the Role of the Informal Caregiver in Infection Prevention and Control in Hospitals in Vietnam : A Focused Ethnographic Study. PhD thesis, Lancaster Medical School.
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Abstract
Background: In low- and middle-income countries, informal caregivers assume an expanded role in patient care, driven by cultural factors and human resource constraints. A comprehensive systematic review was undertaken to consolidate existing evidence concerning the distinct engagement of informal caregivers in patient care across low- and middle-income countries. This review highlighted a critical gap in understanding their pivotal yet inadequately explored contribution to infection prevention and control within hospital environments in these settings. Hospital-acquired infections pose a significant global healthcare challenge, disproportionately affecting low- and middle-income countries due to systemic challenges, including inadequate infrastructure and human resources. Given the significance of hospital-acquired infections, exploring the role of the informal caregiver in infection control is warranted. Methods: This study employed focused ethnography involving informal caregivers and healthcare workers at a secondary-level acute public hospital in Hanoi, Vietnam. Data collection took place in adult inpatient departments over four intermittent weeks from August to December 2018. Purposive sampling using snowballing selected information-rich participants. Data collection methods included observation, semi-structured interviews with informal caregivers and healthcare workers, and a reflection diary to acknowledge researcher biases and ensure quality. Data analysis used Roper and Shapira's (2000) framework for thematic analysis, which was adapted for focused ethnography. Initially, the data was coded into broad categories, which were then refined into descriptive labels. Patterns were identified within these labels, forming themes relevant to the research question. A flexible approach allowed for theme identification through frequency, aligned with the research question. The World Health Organization's core components of the infection control model were then applied for further coding, refining the initial codes. Themes were iteratively reviewed to ensure alignment with participant experiences and research questions. Complex relationships between themes were identified and refined throughout the iterative process. Results: Over four intermittent weeks, spanning four hospital departments (general medicine, neurosurgery, orthopaedics and the emergency room), 32 hours of participant observation and 25 participant interviews were conducted with informal caregivers and healthcare workers. Three themes were identified in the research. Firstly, the embedded role of informal caregivers in the healthcare ecosystem was highlighted, identifying a cadre of commercial caregivers and an increasing professionalisation of the informal caregiving role. The research further identified informal caregivers' acknowledgement of national health policy, cultural expectations, and reliance on their role but found their integration into the healthcare workforce remains incomplete. Secondly, informal caregivers as proxy healthcare workers in infection prevention and control highlighted their involvement in patient care tasks, many of which pose infection control risks. The research also revealed the formation of a community among informal caregivers, and their interaction with the hospital environment akin to a domestic space was noted. Lastly, navigating the duality of informal caregivers' role in infection prevention and control as both a challenge and an opportunity underscored disparities in infection prevention and control between healthcare workers and informal carers, revealing varying knowledge levels and blame-shifting tendencies among staff. Patients and carers are often uninformed of infection diagnoses, highlighting the need for improved education and consistency. Moreover, constraints such as hospital infrastructure hinder infection control measures, necessitating action to support informal carers and enhance healthcare settings. Conclusion: The research underscores the crucial yet often overlooked role of informal caregivers in healthcare systems, particularly evident in low-income countries, emphasising the need to consider cultural-specific factors. It highlights the intricate interplay between culture and patient safety within the context of informal caregivers in hospitals, revealing various dimensions that influence caregivers' interactions and impact patient safety. Moreover, it identifies a lack of awareness among informal caregivers regarding their role in infection control, indicating the necessity for targeted education and training programmes tailored to them. The study also uncovers significant infrastructural, educational, and cultural barriers hindering the practical implementation of infection control measures by informal caregivers. It provides policy, practice, and research recommendations across infection control, emphasising the need for infection control training among informal caregivers, recognition of their role, resource allocation and understanding of their interactions in the hospital environment. Furthermore, it contributes to the existing body of knowledge by deepening our understanding of the role of informal caregivers in infection prevention and control. The findings carry implications for policy and practice, supporting tailored interventions to empower informal caregivers in their infection control roles. Addressing the identified challenges and promoting collaboration between healthcare workers and informal caregivers can enhance patient safety and mitigate the risk of healthcare-associated infections in low- and middle-income countries. Lastly, while valuable insights have been provided, it is essential to acknowledge the research's limitations and the need for further research to build upon these findings and further advance our understanding of this important area.