A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis

Abstract

Abstract:This paper explores how people with progressive Multiple Sclerosis (MS) give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression. This repeat interview study is empirically grounded in twenty eight interviews with fourteen people with progressive MS. We identified gender differences in diagnosis-seeking which impacted upon subsequent sense-making. Male respondents found a diagnosis of MS difficult to come to terms with, and an enduring sense of loss or anger could inhibit further sense-making. A diagnosis of MS was more difficult to obtain for women respondents, and any sense of certainty that diagnosis provided framed their subsequent sense-making strategies. The complex sequelae of MS require that self-management strategies are both contextual and timely; although even the most accomplished selfmanagers can lose their sense of self with neurodegeneration. Disease progression can be associated with suicidal ideation, suggesting the need for greater dialogue to ensure that people with MS are adequately supported to fulfil their quality of life at all stages of neurodegeneration. These lay perspectives emphasise the articulation of affect rather than the rendering of a medical diagnosis, although diagnosis may provide a degree of certainty in the short term. The ethos of self-management ensures people attempt to retain their sense of 'normality' and existent social roles for as long as possible, but this ethos can negate both ones' ability to selfmanage and the management of self.http://mc.manuscriptcentral.com/health Health: an interdisciplinary journal for the social study of health, Illness and medicine This repeat interview study is empirically grounded in twenty eight interviews with fourteen people with progressive MS. We identified gender differences in diagnosisseeking which impacted upon subsequent sense-making. Male respondents found a diagnosis of MS difficult to come to terms with, and an enduring sense of loss or anger could inhibit further sense-making. A diagnosis of MS was more difficult to obtain for women respondents, and any sense of certainty that diagnosis provided framed their subsequent sense-making strategies. The complex sequelae of MS require that self-management strategies are both contextual and timely; although even the most accomplished self-managers can lose their sense of self with neurodegeneration. Disease progression can be associated with suicidal ideation, suggesting the need for greater dialogue to ensure that people with MS are adequately supported to fulfil their quality of life at all stages of neurodegeneration.These lay perspectives emphasise the articulation of affect rather than the rendering of a medical diagnosis, although diagnosis may provide a degree of certainty in the short term. The ethos of self-management ensures people attempt to retain their sense of 'normality' an...

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