• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Negotiating trust on health-related forums

Effi

Senior Member
Messages
1,496
Location
Europe
Not very interesting, but at least it looks like pretty realistic information. Did any PR members take part in this study?

(paywalled) http://www.sciencedirect.com/science/article/pii/S0277953616303136

Abstract
The internet is increasingly being used as a source of health advice and information by individuals with long term conditions (LTCs). Specifically, online forums allow people to interact with others with similar conditions. However, it is not clear how online health information is assessed by those with LTCs. This study aims to address this gap by exploring how individuals with contested and uncontested LTCs utilise internet forums.

Semi-structured interviews were conducted with 20 participants with ME/CFS and 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups.

The findings indicate that the use of online forums was a complex and nuanced process and was influenced by a number of individual and illness-specific factors. Participants trusted those with similar experiences and perspectives as themselves, while also valuing conventional biomedical information and advice. By accessing support online, forum users were able to draw on a personalised form of support based on the lived experiences of their peers. However, the role of digital literacy in developing and maintaining online relationships must be acknowledged.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
Just wondering what is a "contested" vs. "noncontested" LTC? Of course I'm presuming they mean illnesses which are legitimized, or not, by the medical profession at large, and we know where we stand, but it would have been nice if they had said exactly what they mean. Also note they use the word "condition" as opposed to illness - a condition can be anything - having red hair, etc. etc.

They seem to have waffled so much on the very terms they use as to almost make their conclusions meaningless; but it is better than saying people go to on-line forums to find support for their delusions.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
The article challenges the belief of some academics that information on the internet is dangerous, because it is usually of low quality and people will just believe any old shit. The truth is that exposure to variability in quality leads us to develop better faculties to sort the BS from valuable information and some of the things reported in the interviews in the study reflects that.
 

Tom Kindlon

Senior Member
Messages
1,734
Brady 2016.png


 
Last edited:
Messages
516
The article challenges the belief of some academics that information on the internet is dangerous, because it is usually of low quality and people will just believe any old shit.

The net product (or root cause, poor choice of words) is an entire system (medical + extra) that treats grown adults like children (and then fails them). Any time I have to play along with that I die a little inside.
 
Last edited: