An ongoing process of inner negotiation – a Grounded Theory study of self‐management among people living with chronic illness

Abstract

Aim. The aim of this study was to better understand the main concern of self‐management processes among people with chronic illness. Background. One aspect of living with chronic illness is self‐management that can reduce the illness impact on daily life and promote future health. Although factors that influence self‐management have been identified in previous research, little attention has been brought to the process of making self‐management decisions. In clinical settings, use of a theory could facilitate patient‐empowering approaches. Method. The data collection for this Grounded Theory was mostly conducted in 2006. Data were collected by interviews with 26 adults with a variety of chronic illnesses, including rheumatoid arthritis, diabetes mellitus, inflammatory bowel syndrome, multiple sclerosis, ischaemic heart disease and chronic kidney failure. Results. Individuals are conflicted by competing preferences when taking decisions about self‐management. Consequently, the decision‐making process can be understood as an ongoing inner negotiation between different incompatible perspectives, e.g. social needs vs. medical needs. The process of negotiating self‐management starts with the individual’s considering beliefs about health and illness, which make the individual face illness threats and the need for self‐management. Several aspects influence negotiating self‐management namely, assessing effects of self‐management; evaluating own capacity; perceiving normality or stigmatisation; and experiencing support and external resources. The process has been demonstrated in a model. Conclusions. The process of negotiating self‐management is an ongoing inner debate rather than a one‐time decision. This opens up new ways of understanding, and communicating with, patients. The described model also links behavioural theories and research findings in a comprehensive understanding. Relevance to clinical practice. This model could be applicable as a communication tool for health‐care providers in identifying barriers to, and resources in, self‐management behaviour among individuals with chronic illness.