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

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.

Is Nurse Jackie Good for What Ails You?

[youtube=http://www.youtube.com/watch?v=5op6IdCXYqo]

Season 2 of the Edie Falco series on Showtime kicked off yesterday evening. Two immediate observations in passing: Jackie’s lifestyle is starting to catch up with her (so the show may be unrealistic at times, but it’s not all fantasy) and the episode’s most significant representation of patient advocacy showed Jackie on the phone trying to get a patient insurance coverage (good timing, on the eve of Obama’s signing of the health insurance reform bill).

We posted on “Nurse Jackie” from different angles (skeptical, enthusiastic) back during season one. It’s just entertainment, say many people. Others resent the less than idealized depiction of a nurse. Others find a heroic figure in Jackie despite her bad behavior. Or because of it. And so it goes. But the show does seem to have staying power. Are you watching? Are you a nurse watching, and how does that feel?

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Might Health Care Reform Happen? And What Will It Mean for Nurses?

By Shawn Kennedy, AJN editorial director/interim editor-in-chief

Sometime in the next few days, Congress may bring the health care reform issue to a final vote and even a resolution of sorts, though one never knows what new twists may occur before then. I can’t even imagine what will occupy the news if it really does pass. (Philandering professional athletes and pilfering politicians better beware as newspapers seek new headlines.) 

Many Americans are calling their legislators to tell them what they want and don’t want. At the same time, many remain confused by the complexity of the legislative process as well as the particulars of the legislation. The final push received a boost this week from projections by the Congressional Budget Office that the bill would cut the budget deficit by $1.2 trillion over the next two decades. 

As nurses, we need to be knowledgeable and concerned with how health care will shape up—we’ll be delivering it. For information on the current bills under consideration, here’s two accessible sources: the Washington Post has a comparison of what the already passed Senate bill and the reconciliation version under consideration by the House include; the New York Times provides a pdf of the House bill.

Here’s a short list of provisions related to nursing likely to be in a final bill (as we noted in a post back in December about a useful ANA chart comparing House and Senate bills at the time):

Word Games? ANA Says We’ve Already Got a National Nurse; Others Disagree

By Shawn Kennedy, MA, RN, AJN interim editor-in-chief

On a new post at Homeland Voice, author Fiona Regina, MSN, RN, presents a rather critical discussion of the American Nurses Association’s opposition to the National Nurse initiative. She writes, “For heaven’s sake, it’s time for the ANA to get on board. The entire ANA organization would be better served by embracing motivated, politically active nurses willing to improve the health of our nation.” 

Regina offers several theories as to why the ANA might be taking the position (that is, aside from their stated reasons, one of which is that the U.S. Public Health Service already has a Chief Nursing Officer); what’s lacking in her piece, though, is any comment from the ANA to refute her charges or further elucidate their position. 

The ANA stance aside, the notion of a National Nurse keeps coming up and has support from many sectors. Diana Mason, AJN‘s editor-in-chief emeritus, argued for it here last September. More nurses should join the debate so that this issue can either move forward or be put to rest. What’s your opinion?
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Workplace Violence Against Nurses — Neither Inevitable Nor Acceptable

I’ve read about hospital nurses dealing with violence at work, but I always told myself that was something that happened in the emergency room or the psych ward. In oncology, I reasoned, we have relationships with our patients, and I have always felt safe with them.

So begins a harrowing—and remarkably nonjudgmental— story of a really bad day at work, written by Theresa Brown, a nurse who blogs regularly for the NY Times. (AJN will be featuring a profile of Brown in the May issue.)

Unhappy coincidence: It so happens that AJN published a Viewpoint essay on workplace violence in the March issue. Here’s how it starts:

I was working in the ED one day when a patient looked up and threatened to kill me. Grabbing my hand, he squeezed it until I thought it would break. It took several staff members to restrain him and force him to let go. I’ll never forget how he looked into my eyes and smiled as I screamed in pain.

Some of my colleagues said I should file a police report; others told me to get used to this type of behavior and toughen up. I called the police, and although they took my statement, they wouldn’t arrest the patient because he hadn’t inflicted “serious bodily injury.”

The author, Jessica Leigh, offers advice to those who have faced workplace violence as nurses, and makes several recommendations for influencing policies at your hospital or facility, as well as […]

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