Exercising power in the self-management of COPD: A narrative inquiry

Abstract

Background: COPD is a common but underdiagnosed illness of the lungs and airways. Treatment is complex and varied and incorporates extensive self-management. Learning to self-manage in COPD requires people to draw on considerable resources. Recent policy and practice developments in the Republic of Ireland have highlighted the role of self-management in the care of people with COPD. However, there is a tendency in the policy and clinical literature to equate self-management with medical and behavioural management of COPD and an expectation that people with COPD should comply with the recommendations of health care professionals (HCPs). This eclipses the everyday self-management experience of people with COPD. Literature on living with chronic illness indicates that this experience is a source of power. Despite this, there is a lack of research conducted on how individuals with COPD exercise power in the self-management of their illness. Aim: This study therefore aims to develop an in-depth understanding of how people with COPD exercise power in the self-management of their illness. Methods: Adopting a narrative methodology and framed by a Foucauldian conceptualisation of power, knowledge and agency, 31 people with COPD took part in up to three in-depth, unstructured interviews. Participants could choose to include a family member in the interviews. Data were analysed using thematic template analysis. Findings: The findings of this study set out how people with COPD exercised power by mobilising agency in two main ways. Firstly, they appropriated medical knowledge and mobilised their own embodied knowledge as well as knowledge of alternative therapies to underpin their self-management practice. Secondly, they engaged in reflexive practices known as ?technologies of the self? designed to achieve happiness, well-being and health. However, their agency was always constrained and limited by the imposition of power on them, through surveillance and discipline of their private lives (pastoral power), through the shifting of responsibility for care from health care professionals on to them (responsibilisation) and through the imposition of medical standards and expectations on them. People with COPD had to negotiate a shifting boundary between power and agency in everyday self-management as they integrated medical and experiential knowledge and practice in order to construct an individualised approach to self-management. Conclusion: This is the first study to examine how people with COPD exercise power in the self-management of their illness. The findings contribute knowledge about how a Foucauldian theoretical framework of power, knowledge and agency can assist in recommending a shift to a model of self-management that is holistic and based on a recognition of the agency of people with COPD. The findings reveal COPD self-management to be a complex and multi-dimensional concept that is actively negotiated and constructed by people with COPD. This study supports an overall recommendation that honouring the knowledge and agency of people with COPD should form the basis of self-management support.