Health information work and the enactment of care in couples and families affected by Multiple Sclerosis

Mazanderani, Fadhila, Hughes, Nic, Hardy, Claire, Sillence, Elizabeth and Powell, John (2019) Health information work and the enactment of care in couples and families affected by Multiple Sclerosis. Sociology of Health and Illness, 41 (2). pp. 395-410. ISSN 0141-9889

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Abstract

Given the considerable emphasis placed on informed choice, the management of health information has become an increasingly important part of living with chronic illness. This paper explores the intra-familial dynamics of managing health information in the context of chronic illness. Drawing on 77 interviews with people affected by Multiple Sclerosis in the UK (patients, partners, family members and close friends), we show how families develop their own idiosyncratic information practices, including the careful, at times strategic, seeking, sharing and withholding of information. We describe how one individual, most commonly either the patient or their partner, often takes primary responsibility for managing growing quantities of health information. Doing this is a complex task, yet its dynamics within the family unit remain invisible and unacknowledged. In this paper we: (a) stress the importance of understanding information management in chronic illness as a collective process across all those affected, patients as well as carers; (b) conceptualise the process of managing health information in this context as ‘health information work’; and (c) analyse it as part of the wider care practices families engage in and as a form of care in its own right.

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