| dc.description.abstract | 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. | en_US |
