Unpicking Dependency; Managing 'Becoming' – supporting the experiences of patients living with chronic disease (original) (raw)

This paper presents conceptual analysis based on an exploratory study involving patients in the UK living with a diagnosis of Inflammatory Bowel Disease (IBD). The study was concerned with understanding the lived experience of these patients, exploring the impact of IBD on their lives and their relationships with caregivers. After an initial descriptive-level analysis of the interview data, this paper suggests that for many patients their initial diagnosis is followed by a period of 'becoming'; of learning to live with IBD. For those with a responsibility for managing care this poses at least two questions. Firstly, how should the immediate care needs of the patient be addressed? Secondly, how ought this process of becoming be supported? Whilst the first of these questions, whilst difficult, is not 'wicked' (it can be easily defined and a clear 'solution' found – care can be managed even if the condition cannot be 'cured'); the second problem certainly fulfills basic criteria for description as 'wicked' (Rittel and Webber, 1973; Grint, 2005; Raisio, 2009). This paper will provide evidence for a claim that supporting a process of 'becoming' must begin with an appreciation of the individuals' needs – that it cannot be standardised. Equally the complexity of the problem, partly because it demands a response to individual needs that shift over time and partly due to the multi-faceted nature of the challenges (physical, emotional, psychological, informational etc.), suggests a 'wickedness' that presents a challenge to those seeking to provide and manage care. In discussing these challenges, this paper offers insight into the notion of 'dependency' and encourages rethinking of this notion in the light of both the empirical evidence and discussion of 'wickedness'. A more nuanced and careful understanding of dependence is called for and with it a normative demand for basing the caring relationship on an appreciation of both individuality and the expertise of the patient, even at a time when they are confused, upset, angry and know nothing about their diagnosis. Whilst based on a single study, it will be argued that the conclusions apply much more broadly and across a wide-range of domains. As such, this paper contributes to debates concerning the management of health and social care services, and may offer a partial comfort to those addressing 'wicked' problems.