Exploring complexity in community palliative care: a practitioner based approach to research and development

Abstract

This thesis explores the complex discipline of community palliative care. Palliative patients suffer from a range of conditions, have complex, evolving clinical problems and receive care from a wide variety of health and social care professionals. Understanding these issues is central to effective service provision and maintaining continuity of care for patients and their carers. Current community palliative care provision in the UK is the result ofthe co-evolution of the emergent specialties of palliative and primary care over the past sixty years. A critical realist and practitioner based research approach is used in a multi-method study ofthe reasons for emergency admission ofpalliative patients into hospital and a qualitative study exploring the work and experiences of health care assistants prov~ding practical supportive care for palliative patients in their homes. Examining narratives of patients, carers and health professionals enables in depth exploration ofthe fundamental elements and contexts which define the inherent complexity ofthis area. Emergency admission ofpalliative patients represents a significant breach in continuity of care often resulting in disruption for both patient and health care services. The reasons for these admissions are many and complex. Relationships of power between different health professionals and between patients and health professionals exert a major influence on community palliative care provision and the process of admission. Health care assistants are relatively powerless and employed as basic carers, yet in community palliative care they undertake emotional labour, for which they draw on their personal resources. This aspect oftheir practice is crucial for patients and their carers; however it is largely unrecognised by formal health care services. Undertaking research in the context of a community palliative care team enables the development of a community of research practice. This provides an effective model for both developing an evidence base for community palliative care and the development of appropriate local services