Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness

Barker, Kristin K.

doi:10.1177/002214650804900103

Cited by 254 publications

(253 citation statements)

References 54 publications

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“…A middle-aged employee stated clearly that he searched for medical "facts" because "I rely on orthodox medicine." 4 The other half of the participants, most particularly women, were more interested in finding medical and health-related information to help them in their day-to-day routines, reflecting the idea of the "informed patient" who takes health matters into their own hands (Hardey 1999;Broom 2005;Barker 2008). Rather than standardized medical solutions, these users were interested in information that enabled them to act in terms of measuring and controlling blood sugar levels, or handling an asthmatic attack, for example.…”

Section: Thought Styles Abstract and Evaluation Practicesmentioning

confidence: 99%

Search Engines Matter: From Educating Users Towards Engaging with Online Health Information Practices

Mager

2012

Policy & Internet

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While the Internet is often discussed as empowering or endangering patients due to broadening access to medical and health-related information, little is known about the way patients actually get informed about medical conditions and how the technology shapes their practices. This article draws on 40 user observations and 40 qualitative interviews to explore how users employ the web to obtain knowledge about a chronic disease in the Austrian context. Following concepts from the field of Science and Technology Studies (STS) it explores how users' individual medical preferences and search engines' mechanisms of pre-filtering information co-shape online health information practices. The analysis demonstrates that search engines are not passive intermediaries, but rather actively shape how users browse through, select and evaluate health information in the context of their own bodies of knowledge. Accordingly, new skills are required on the part of users, but also on the part of medical professionals and policy makers. Both policy makers and doctors should engage with users' highly individual search practices and establish more dialogueoriented and technology-focused health policy measures, rather than trying to educate users with standardized quality criteria for websites not responding to users' online routines and needs.

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Section: Thought Styles Abstract and Evaluation Practicesmentioning

confidence: 99%

Search Engines Matter: From Educating Users Towards Engaging with Online Health Information Practices

Mager

2012

Policy & Internet

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“…A proposição de projetos de lei de proteção à pessoa autista, ainda que pouco expressiva, também aparece. Essa tendência dos dados analisados está em consonância com a literatura internacional que aponta a organização de pacientes em meio virtuais em prol de seus direitos civis, o que configura uma nova modalidade de ativismo em saúde (Barker, 2008;Epstein, 2008;Gillet, 2003;Chamak, 2008).…”

Section: Resultsunclassified

“…Essas são apenas tendências para aonde apontam os dados, sendo importante lembrar que esse é um campo de investigação ainda inicial no Brasil, o que revela 10 A esse respeito, dados internacionais corroboram essa tendência encontrada nos dados analisados (Barker, 2008;Bromm, Tovey, 2008;Fox et al, 2005a;Gillet, 2003;Blumenthal, 2002;Hardey, 1999 …”

Section: Discussão Dos Dadosunclassified

“…A pesquisa sobre o impacto da internet na experiência de portadores de doenças -sobretudo aquelas envoltas em incertezas quanto à etiologia -é assunto em plena expansão no campo do conhecimento sociológico em saúde (Conrad, Stults, 2010;Barker, 2008;Bromm, Tovey, 2008;Miah, Rich, 2008;Schaffer, Kuczynski, Skinner, 2008;Berger, Wagner, Baker, 2005;Broom, 2005;Fox, Ward, o'Rourke, 2005a, 2005bSeale, 2005;Gandchoff, 2004;Gillet, 2003;Blumenthal, 2002;Hardey, 1999).…”

Section: Introductionunclassified

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A construção do diagnóstico do autismo em uma rede social virtual brasileira

Ortega

Zorzanelli

Meierhoffer

et al. 2013

Interface (Botucatu)

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Este artigo apresenta alguns resultados de uma pesquisa realizada em uma rede social virtual brasileira, com o tema do autismo. Investigou-se a opinião pública sobre o autismo nessa rede, por meio de suas comunidades ligadas ao assunto. A opinião pública sobre determinada condição médica traz consequências diretas sobre a experiência do doente e sobre as pessoas implicadas em cuidar dos pacientes acometidos. Os resultados apontam algumas direções a respeito das representações dos usuários sobre as supostas causas da doença, os métodos de tratamento, as formas de ativismo e de busca de direitos dos portadores, e os usos paradoxais do conhecimento médico, ao qual se atribui a possibilidade de desvendar a doença, e, ao mesmo tempo, é alvo de resistência de pais e cuidadores, que priorizam o conhecimento proveniente de sua experiência cotidiana com os autistas.

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“…Observation included collecting data from status updates and comments made on other participants' status updates. Gathering naturally occurring data can provide insight into the construction of meaning and identities, which is important in assessing question of the self as posed by in this research (Mann and Stewart 2000;Barker 2008 Facebook has a temporal element in addition to the more obvious collaborative, relational and self-representational aspects.…”

Section: Observationmentioning

confidence: 99%

Constructing Facebook: cnstituting social space online

Smith¹

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This thesis explores the ways in which Facebook is created as a space and how this space is produced through the presentation of the self and the friendships that Facebook contains. The focus of the thesis is on understanding the interplay between the constraints of Facebook's framework, and how users act within it. To address this focus, this research takes a critical realist approach. To embody a critical realist approach in the social sciences is to use a combination of methods in order to elucidate the phenomena at hand.As such, this research takes a case study approach to Facebook which combines a variety of methods in order to approach the object of study. These methods include a structured questionnaire, semi-structured interviewing and observation.From the results generated by these methods, I argue that Facebook, while new in many ways, is not inherently more disruptive to friendship than other forms of mediation that have preceded it and should be understood as part of a continuum of changes that have shaped the expression of friendship. In fact, Facebook removes some of the temporal aspects of friendship, being no longer location or place specific as it relocates some of these characteristics to Facebook. The architecture of Facebook means that friendships become simultaneously dynamic and static, as they can be maintained with little effort, while remaining current. Using Facebook as a hub through which to manage friendships means that users must present at least a portion of their selves to be presented for consumption and comment. Not doing so tacitly resists the pressure that Facebook puts on users to be part of its social hum. Deciding on the 'right' way to present the self requires accounting for the space one is acting in, similar to face-to-face interaction. The sharing of the self helps to facilitate impromptu socialising regardless of corporeal presence.Building on these results, I argue Facebook can be best understood as a parochial space that contains known, although not necessarily intimate others. Facebook is a place and a space -an abstract space rather than an organic space created by capital for its own purposes. Even so, abstract space can be resisted and re-shaped. People demonstrate agency in reshaping both in how space is used to 'get around', but also in how social relations are formed, maintained, ordered and sustained. The popularity of Facebook has helped foster a reconfigured parochial sphere that be framed as a return to gemeinschaft, and the 'village square'. There is little of the public realm or the stranger about Facebook. 3Although Facebook potentially gives the comfort of Tönnies' gemeinschaft village square it does have some important differences. Rather than bestowed through birth and kinship, this village is intentionally created and 'curated' by the user to meet varied social and relational needs and obligations. Relationships are formed, ordered and sustained reflexively according to the dictates of Facebook's architecture and the reflexive preferences of ...

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Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness

Cited by 254 publications

References 54 publications

Search Engines Matter: From Educating Users Towards Engaging with Online Health Information Practices

Search Engines Matter: From Educating Users Towards Engaging with Online Health Information Practices

A construção do diagnóstico do autismo em uma rede social virtual brasileira

Constructing Facebook: cnstituting social space online

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