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

Datos Bibliográficos

ID2249494
AutoresFadhila Mazanderani (0000-0002-3975-3283, Department of Science, Technology and Innovation Studies Edinburgh UK, autor de correspondencia), Nicholas D Hughes (0000-0003-0129-922X, University of Leeds), Nicholas Hughes (University of Leeds Leeds UK), Claire Hardy (0000-0002-3675-1901, Faculty of Health and Medicine Lancaster University Lancaster UK), Elizabeth Sillence (0000-0003-1085-7115, Northumbria University Newcastle upon Tyne UK), Jami Powell (0000-0002-1456-4857, University of Oxford), John Powell (0000-0001-6124-439X, Department of Primary Health Care University of Oxford UK)
Año2019
Volumen41
Número2
Páginas395-410
Fecha de publicación2019-02-01
Peer ReviewedSí
Open AccessSí
TipoARTICLE
RevistaSociology of Health & Illness (JOURNAL)
Identificadores de la revistaISSN: 0141-9889 • E-ISSN: 1467-9566
EditorialWiley (PUBLISHER • GB)
DOI10.1111/1467-9566.12842
PMID30677163
OpenAlexW2898449891
IdiomaEN
Citas recibidas13
Referencias citadas61

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 theUK(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

Context (archaeology) · Health care · Information management · Information sharing · Knowledge management · Political science · Public relations · Work (physics) · Family Support in Illness · Healthcare innovation and challenges · Intergenerational Family Dynamics and Caregiving · Medicine · Nursing · Psychology