Nurses’ responses to expert patients: The rhetoric and reality of self-management in long-term conditions: A grounded theory study

Background Against the backdrop in the western world of increasing prevalence of chronic disease, active and informed patients and a policy emphasis on self-management, this English study explored health professionals’ responses to expert patients. Objectives To: • Explore how patient expertise is viewed, interpreted, defined and experienced by both patients and health professionals. • Analyse how patient expertise is promoted and enabled through the self-management process. • Uncover the mechanisms that enhance or impede the development of patient expertise. Design A grounded theory approach was utilised with two concurrent data strands. Setting A relatively affluent English county including community, primary and secondary care settings. Participants Via purposeful and theoretical sampling 100 health professionals (nurses, doctors, physiotherapists) and 100 adults affected by chronic disease participated. Methods Focus groups, interviews and observation. Results Nurses were found to be most anxious about expert patients when compared to other professionals, which appeared to be linked with a lack of professional confidence and unfounded fears regarding litigation. However, nurse specialists often provided a negative case for this. As a whole, nurses were most able to meet the emotional needs of patients, but apart from nurse specialists did not articulate this as a skill. Conclusion Apart from nurse specialists the majority of nurses appeared limited in appropriately facilitating self-management. It is suggested that this is linked to an ongoing nursing culture of patient as passive, an over-emphasis on empirical knowledge and a feeling of vulnerability on the nurses’ part towards expert patients. The findings also indicate a rhetoric rather than reality of autonomous nursing roles within the chronic disease management agenda.