PPF21 Lessons learned from an ethnography in the inpatient hospital: the pitfalls, challenges and opportunities of ‘insider’ research

Résumé fourni par la source

Background Ethnographic methods can produce rigorous, trustworthy insights from first-hand observations in real-world settings. Critical analysis of activities can produce powerful solution-orientated conclusions but these methods are under-utilised in international hospital-based palliative care research owing to logistical, ethical and practical barriers. The PERSPEX study (Personalised Care and Patient Experience) investigates multiple perspectives on personalised palliative care for hospital inpatients: how it is defined, prioritized, experienced and what impact it has. Methods Field notes and recordings from interviews with patients, families, clinicians and health leaders (n=36) and clinician-inpatient-family observations (n=39) in a mid-size UK hospital (where the researcher also works clinically) were collected over ten months and analysed using reflexive thematic analysis. Initial findings, alongside patient and public involvement (PPI), prompted further research examining complaints data. Reciprocal dialogue with PPI colleagues at key junctures ensured centrality of patient experience to study design and implementation. Results Clinical pressures caused recruitment challenges resulting in pragmatic decisions to undertake more observations than interviews. Patient and most clinician participants viewed ‘personalised care’ as more closely related to moral action and empathy than providing/being provided with choice. While participants stated that personalised care deserves high priority, data analysis found it deprioritized by clinicians or leadership figures experiencing disincentivizing system barriers. Consequently, experiences of hospital admissions for those with palliative care needs can be dehumanizing. Professionals struggled to articulate how they might teach or measure personalised care. Discussion I will discuss the potential for wider use of ethnographic methods in hospital palliative care research, overcoming barriers, and reflect on my ‘insider role’ as a clinical academic. This facilitated sponsorship, governance and recruitment due to trust and familiarity but also required attention to potential risks relating to trustworthiness of study findings, addressed through maintaining reflexivity and practical clarity about boundaries. Despite challenges, hospital-based ethnographies can be successful and contribute substantially.

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