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

Abstract

An ongoing process of inner negotiation -a Grounded Theory study of selfmanagement among people living with chronic illness Aim. The aim of this study was to better understand the main concern of selfmanagement 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, selfmanagement behaviour among individuals with chronic illness.

The experience of stigma in inflammatory bowel disease: An interpretive (hermeneutic) phenomenological study

“…As in other chronic illnesses (Colbert, Kim, Sereika, & Erlen, ; Whatley, Dilorio, & Yeager, ), social support promotes self‐management, encourages adherence to medication regimens and improves disease control (Lee, Bowen, Mosley, & Turner, ). The suggested relationship between social support, control (which aids normalization) and IBD‐related stigma supports arguments that managing stigma is integral to normalization in chronic illness (Audulv, Norbergh, Asplund, & Hörnsten, ; Joachim & Acorn, ).…”

Learning to live with diabetes – integrating an illness or objectifying a disease

“…This is further discussed by Aujoulat et al. (2008) in terms of holding on and letting go, and as an on‐going inner negotiation in decision‐making (Audulv et al. 2009) for participants with various chronic illnesses.…”

The Multiple Sclerosis Self-Management Scale

“…11,12 The majority of the people with MS involved in these studies have expressed a keen desire to participate in self-management programs, not only to learn about their condition but also to interact with others who share similar challenges. 4,13,14 Prior to the availability of an MS self-management tool, most clinicians and researchers relied on the assessment of self-management components (eg, self-efficacy, which is associated with improvement in health status). 15 Self-efficacy tools were commonly used to evaluate the usefulness of self-management programs.…”