The expert patient: an exploration of self-management in long term conditions
Wilson, P. M.
Chronic disease is the major challenge facing global health care. In tandem there has been the emergence of active and informed patients in western society, with the contemporary patient increasingly involved in decisions about their treatment and care. However, while it is acknowledged that the vast majority of chronic disease management is via self-care and effective self-management has a potentially significant effect on reducing resource demand, there has been comparatively little research on the concept of the expert self-managing patient within chronic disease. The aims of this study were therefore to: " Investigate how patient expertise is viewed, interpreted, defined and experienced by patients and clinicians. " Understand how patient expertise is promoted and enabled through the self-management process. " Discover how patient expertise is enhanced or impeded by other mechanisms. Adopting a grounded theory approach underpinned by critical realism, the study commenced with three focus groups with patients and seven focus groups conducted with nurses and physiotherapists. Using the emergent themes as a starting point for constant comparative analysis, concurrent data collection via semi-structured interviews and observation was conducted. This included interviews with twenty two patients, twelve clinicians including doctors, nurses and physiotherapists and two Expert Patients Programme lay tutors. Observation was undertaken with ten consultant and nurse-led clinics, a six week Expert Patients Programme and an eight week Back Fitness Course. A storyline is described that illustrates the journey of the expert patient and the thesis explores the barriers and enablers on this journey. A typology of the expert patient is developed in which it is shown that expert patients fall into four quadrants with overt acceptors as the idealized patient within medical consultations. The findings suggest that many expert patients learned characteristics of being succinct and non-emotional when communicating with clinicians, but at the cost of not being able to articulate the emotional consequences of living with chronic disease. Variance from this idealized type leads to conflict which is explored through theories of the medical division of labour. It is concluded that the typology of the expert patient should be widely discussed and acknowledged as a framework for professional and lay practice. In particular, there should be explicit recognition of the emotional needs of people with chronic illness. Recommendations for policy and practice are generated that include acknowledgement of the expert patient beyond the medically idealised type. It is suggested that within the Expert Patients Programme there should be a move away from the current rigid content and delivery style and a greater focus on the subjective experience of chronic illness. Lay tutors would benefit from developing skills to support the psychological needs of participants. Furthermore, it is suggested that the behaviours and working environment that characterised nurse specialists should be used as a template for good practice to enable clinicians to meet the needs of expert patients. Finally, recommendations are made for inter-professional education. It is suggested that the skills of a variety of expert patients beyond the idealized overt-acceptor type are utilised in order to expose clinicians to a fuller range of patient narratives surrounding the experience of chronic disease.