Experiences of continuity when living with chronic heart failure

Abstract

The overall aim of this licentiate thesis was to explore how persons living with chronic heart failure (CHF) experience continuity and discontinuity in their daily life and in their healthcare contacts. The specific aims were: To illuminate whether persons with CHF experience discontinuity in their life and, if so, what helped them to preserve and strengthen continuity in their daily lives (Paper I). The aim was also to describe how the interaction in healthcare encounters contributes to either continuity or discontinuity in the daily life for persons with CHF (Paper II). The Grounded Theory Method (GTM) was used in the collection and analysis of data. Interviews were conducted with 18 participants, including 13 individual interviews and one group interview with five participants. The average age of participants was 76 years. The participants had been diagnosed with CHF from six months to more than five years with a varying severity of the disease. The results showed that life with CHF resulted in disruptions, losses and setbacks in relation to corporeality, temporality and identity. This caused experiences of discontinuity in daily life. To bridge these experiences, the participants constructed recapturing approaches that helped to reconcile them with their lives (Paper I). Moreover, the results showed that a ‘patient-centred agenda’ or a ‘person-centred agenda’ in the healthcare encounter, created from the normative discourse and professional actions, resulted in a sense of either continuity or discontinuity (Paper II). In conclusion, living with CHF could be troublesome in many ways but, despite this, the participants continuously managed upcoming limitations to overcome the obstacles in order to preserve continuity in their lives. Therefore, support from healthcare professionals is needed to preserve continuity in daily life, together with a healthcare organisation that supports one’s ability to manage and overcome discontinuity in daily life.