The self management of heart failure: a place in practice?

BACKGROUND Self management of heart failure has been suggested as a way to prevent hospital admissions. Understanding influences on self management could help to achieve targets for clinical outcomes and patient engagement. The implementation of self management in heart failure appears to be limited compared with other long term conditions. We know little about why this is the case. AIM To identify patients‟ and healthcare professionals‟ knowledge of and attitudes towards self management of chronic heart failure. SETTING AND PARTICIPANTS Twenty-one patients (14 women and 7 men with a mean age of 74) recruited from a general medical practice in an urban area of Leeds, West Yorkshire. Professionals (six doctors, five nurses, five pharmacists and three others) recruited from the local health economy. METHODS Semi-structured interviews were recorded with patients meeting defined inclusion criteria and professionals who cared for them or developed local services. Tapes were transcribed verbatim and thematically coded. Relationships between themes were explored qualitatively using "Framework‟ analysis as a guide. RESULTS Patients‟ activities were restricted in similar ways by symptoms, but only nine had good understanding of their diagnosis. Patients trusted their doctors, but were given few opportunities to learn about their condition and engage with its management. Patients‟ need for explanations, capacity to understand and potential for clinical improvement were probably underestimated. If it was proposed, all patients would monitor and record signs or symptoms to guide variable diuretic dosing. Few patients wished to self adjust doses by protocol, preferring instead to follow direct professional instructions. Few patients felt they could learn from group work with peers: a regular part of self management training. Patients‟ attitudes towards disease management were informed by their interpretation of symptoms, care and daily living. Their greatest priority was continuity of care not having more choice or responsibility. Professionals‟ conceptions of patient self management varied considerably. Specialists tended to support full disclosure and possible self management for a wide variety of patients; whereas generalists were more cautious. CONCLUSIONS Patients who could potentially benefit from self management were not aware of it or given enough opportunities to participate. Patients and professionals should work towards more open discussions about diagnosis, expectations and care.