Institutional ethnography of living well with Parkinson’s disease in care homes: Organisational culture, connection and care

Background:<br/>Parkinson’s disease (PD) is a progressive neurological condition affecting over ten million people globally. Many individuals with PD reside in care homes where institutional routines and documentation shape daily experiences. This study used Institutional Ethnography (IE) to explore how residents with PD and staff in Northern Ireland understand and support “living well,” and how their experiences are organised through institutional practices and culture.<br/><br/>Methods:<br/>Guided by IE, the inquiry began from the standpoint of residents with PD and traced how everyday activities were coordinated by institutional relations. Data were generated through semi-structured interviews with residents (n=15) and four focus groups (n=8 per group) with nurses, care assistants, activity coordinators and managers. Field notes captured daily routines, staff–resident interactions, and the physical and social environment. Documentary audits of care plans, medication charts and policies examined how residents’ lives were represented textually. Interviews and focus groups were audio-recorded, transcribed verbatim and analysed thematically using Braun and Clarke’s reflexive approach, guided by IE principles to connect individual experiences with institutional processes. This study took place between January 2025-October 2025.<br/><br/>Results:<br/>Residents described living well as maintaining identity, humour and social connection within institutional constraints. Many experienced tension between safety and autonomy, where organisational priorities limited personal choice. Staff identified three main processes shaping care: navigating clinical and emotional complexity, creating moments of personhood through individualised interactions, and managing systemic constraints such as limited PD-specific training and fragmented multidisciplinary input. Care records and audits showed that documentation primarily reflected medical and functional perspectives, with limited attention to personal preferences or emotional wellbeing.<br/><br/>Conclusion:<br/>Institutional Ethnography demonstrated how organisational routines and documentation structure the experiences of residents with PD in care homes. Living well was supported through relational and person-centred practices but constrained by institutional priorities for safety and efficiency. Enhancing PD-specific education, reflective documentation and relational care can strengthen organisational capacity to support living well in long-term care