internet technologies… and the mediation of HIV communities

Fadhila MazanderaniUniversity of Edinburgh

22nd July 2014

cultures, communities & connections in the HIV sectorAHRC seminar series

Community?

HIV community affected communities

online communities community support

• Community vs. Society (Ferdinance Toennies, 1887)

• 94 definitions of community (George Hillery, 1955)– Location– Activity– Shared beliefs– Shared identity– Common concern or interest– Imagined communities

virtual community

• Review of research conducted on ‘the internet’ and ‘HIV’ between 1995-2011

• Study on how women (originally from sub-Saharan Africa, but living in London at the time) with HIV use the internet in relation to their health (2008-2011)

Global Local

Specific General

Shared Individual

Cyber utopian dystopian visions

Internet technologies and community • break down of community (Kraut et al.; Nie & Erbring)• a new ‘global village’ (McLuhan)• ‘death of distance’ (Cairncross) • virtual communities (Rheingold)

Internet technologies and health • empowering patients (Hardey) • potentially dangerous for patients - misinformation (Kalichman et al.)• ‘revolutionise healthcare’ – more efficient and cost effective (DoH) • ‘disciplining’ patients – enforced responsibilities (Foucauldian perspectives)• ‘mundane realities’ and mediated health (Nettleton; Kivits)

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1995 201120052002 20091999

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Analysis of online content

Information seeking

Development and assessment of customised systems

Sex seeking and risk online

How people living with HIV use the internet

Education and prevention

Internet for research recruitment

How people living with HIV use the internet

in relation to HIV and their health

dating & partner selection

information seekingHealth information

News Statistics

Other people’s experiencesResearch

Treatment information

Legal & benefitsEducation & employment

E-mails

sharing experiences & communication

Blogs

Forums

Social networking sites

Websites

Online support services

Custom built systems

Specific interventions

Telehealth systems

‘Mundane realities’

• Because it’s my health. It’s me that understands myself better than the doctor and I have to take charge of my own health. All the doctor does is to ask how are you feeling? He gives me treatment, I go home [pause]. But all the other things that I need to know, that I need to check for myself, the doctor cannot do that one, he is not paid to do all that. So he will just do his own bit, so this one is my own bit, I have to check for it. Because it’s good that we have Internet, it’s good that we have a lot of information on the Internet, and maybe some of it is not good, but at least it will give you a rough idea. And once you have a rough idea you take the matter up to someone who knows.

• I look at new medication. I look at people’s stories. I look at you know oh [pause] how transmissions from mother to babies have been cut, you know about medication, new stuff coming up and I’m interested to know, to find out, about new medication and the future really.

New forms of inequality/ exclusion?

Access and levels of use:

• Availability not the same as access

• Huge variety in levels of access

• Training and familiarity

• Type of devices

• Location of devices

• Privacy and anonymity

Information infrastructure

‘When I go to the internet for some reason I trust the information. I do. Uhm [pause] because they are different, even if you Google, it will come up with different websites and then you read through the first one and then you read through the second one and you try and connect the information and it adds up. So simple examples like, if you enter urinary tract infection, which I did in the past, you get the same, almost the same information, signs and symptoms. You go on another one and you get the same information. It’s not confusing…’

Classification and categories

• ‘A whole world opened up to me. To meet somebody going through the same thing.’

• ‘It was through going to the groups, getting back the confidence through seeing other people in the same condition and they moved forward.’

Mediators, Mediation and MediatizationConclusion [1/2]:

• Internet as a mediator of everyday life living with HIV

• Mediation and Mediatization• Media convergence– Homogeneity through apparent diversity

– Can reinforce or create new exclusions…

– But also new forms of inclusion

Information and the enactment of communityConclusion [2/2]:

• The role of information practices and information infrastructures in creating ‘communities’

• Subtle, but profound effects of information infrastructure and categorisation

• Creating a common language <> experience– Biomedical and clinical

– Human rights

– Experiential

Acknowledgements• Thank you to people living with HIV, medical practitioners and those

working in relation to HIV-related websites and forums who took part in interviews, spoke to me informally, or offered their insights on internet use and HIV. Without your input this work would not have been possible.

• In particular, Professor Jane Anderson, patients and staff at the Homerton, Newham and Barking university hospitals, and the following organisations: Avert, Body and Soul, i-Base, NAM, Positive East, the Rain Trust and the Terrence Higgins, provided invaluable support to the project.

• Many of the ideas presented here have been informed and enriched through discussions with Sara Paparini – thanks Sara!

• Financial support for two focus groups hosted by the Rain Trust and Body and Soul was provided by the EPSRC (grant EP/G002606/1).

Thank you!

Questions?