TY - JOUR

T1 - Health information work and the enactment of care in couples and families affected by Multiple Sclerosis

AU - Mazanderani, Fadhila

AU - Hughes, Nicholas

AU - Hardy, Claire

AU - Sillence, Elizabeth

AU - Powell, John

N1 - This is the peer reviewed version of the following article: Mazanderani, F. , Hughes, N. , Hardy, C. , Sillence, E. and Powell, J. (2019), Health information work and the enactment of care in couples and families affected by Multiple Sclerosis. Sociol Health Illn, 41: 395-410. doi:10.1111/1467-9566.12842 which has been published in final form at https://onlinelibrary.wiley.com/doi/full/10.1111/1467-9566.12842 This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.

PY - 2019/2/1

Y1 - 2019/2/1

N2 - 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.

AB - 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.

KW - Multiple sclerosis

KW - Internet

KW - Care work

KW - Experience of illness

KW - Interviewing (qualitative)

U2 - 10.1111/1467-9566.12842

DO - 10.1111/1467-9566.12842

M3 - Journal article

VL - 41

SP - 395

EP - 410

JO - Sociology of Health and Illness

JF - Sociology of Health and Illness

SN - 0141-9889

IS - 2

ER -