Posts Tagged ‘patient perspective’

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Online Social Networks for Chronic Illness – Time for Providers to Take Them Seriously

March 25, 2010

For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role.

“It’s really literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.

That’s from an article in the technology section of today’s NY Times, which draws upon a report from the Pew Internet and American Life Foundation about how people with chronic illnesses are finding connection, support, and information in online social networks like DiabetesConnect.

Chronic illness can be isolating for many reasons: you often can’t explain a condition’s relentlessness and complexity to those around you; at the same time, you may be homebound or to some degree limited in the types of activities you can engage in.

Providers should be aware of such online networks and the role they play for patients. Patients get useful information about self-care, and they feel less alone—though some who study online social networks do caution against any sites where the mood is focused entirely on the negative. Good feelings and bad (like good information and bad) can both be infectious on the Web, as we’ve learned during recent political debates.

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“As Comforting as a Rodeo Clown”: When Competence Is at Odds with Bedside Manner

January 28, 2010

Then it comes to me. This is the same recovery nurse who brought our son out of anesthesia when he had ear tube surgery. This is the woman who jostled him in her arms like she was mixing pancake batter in a Tupperware container, who insisted “baby need stimulus,” dancing away from me as Luke reached and screamed.

That’s from the Reflections essay in our February issue, and is written by a patient who tells a funny (and insightful) story of finding himself dependent for a second time on a nurse and doctor he’d sworn to himself he’d never let near him again. So, does it help to hear the patient perspective sometimes? (For the best reading experience, click through to the PDF version.)

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