My Virtual Neighbors. Or, the Value of Online Media in Kids’ Health

Sometimes what I’m reading and what crops up in the Asthma Mom comments collide, and art imitates life or life imitates art, I don’t know which.

I love that.

Case in pont: Kelley’s question yesterday and the subsequent discussion of allergy med choices and Singulair side effects.

In the early 2000′s, I had one healthy baby and one preschooler with asthma that we couldn’t get under control. To give you an idea, I describe her as a “preschooler” because of her age, not because her health actually permitted her to attend preschool. Since blogs didn’t permeate the Internet then the way they do now, I used to read about asthma on messageboards and ask the other members questions about my daughter’s health all the time.


She looks happy despite all those early problems, huh?

Those wonderful messageboard parents taught me

– To request a peak-flow meter, allergy testing, and a referral to a pediatric pulmonologist.
– To do my research so I could ask the right questions in the doctor’s office.
– To learn about dust mites and the importance of covering my daughter’s mattress and pillow.

That last bit of advice helped my kid sleep through the night and freed us from the 2:00 am coughing fits more than anything else.

The Internet changed our lives.

Participating in messageboards felt like having thousands of neighbors with asthma children themselves, unlike my actual neighbors in real life. And every week, I see so many of you doing the same thing for one another here.

Now check out this article on BBC News, Internet child health advice ‘wrong.’ The research within advises UK parents to ask healthcare professionals and visit “governmental or other pre-approved websites” for information first, rather than rely on Internet searches that pull up inaccurate kids’ health information.

EXCEPT

– In the US, parents head to the Web in the first place because doctors don’t have time for the detailed, lengthy discussions and brainstorm sessions that blogs and social networks offer.

– Going to vetted sites for medical information makes sense, but so does heading to Internet communities for emotional support, non-medical tips, and suggestions.

– You can find accurate information on children’s health sites, but you have to be picky. Look for disclaimers (see right sidebar), online “honor codes” (again, right sidebar), and links to established medical sites that back up the author’s own musings.
(ETA: Well, usually they’re in that sidebar. We’re in the middle of a redesign this week, and I have no idea where they went at the moment. Don’t worry! They’re here somewhere and will reappear when the redesign’s done.)

(ETA, again: HA! Found them.)

Consider this passage from new Pew research on adults with chronic conditions and Internet usage:

And yet, those who are online have a trump card. They have each other. This survey finds that having a chronic disease increases the probability that an internet user will share what they know and learn from their peers. They unearth nuggets of information. They blog. They participate in online discussions. And they just keep going.

13 responses to “My Virtual Neighbors. Or, the Value of Online Media in Kids’ Health”

  1. Samantha says:

    I love your blog, I really really do. And I cant tell you how helpful reading yours and aimee (angryasthmamama) and the comments from readers on my own blog, have been to me as I work my way through this adventure with my girl. Having the advice of asthma moms and dads, and adult asthmatics who have been through this stage before has been so amazing for us and really helped keep me sane at times.

  2. I agree, the internet has been invaluable. Anecdotal patient advice/experience is sometimes worth its weight in gold.

    The internet has improved my health in ways no doctor ever has.

    M

  3. Sara C. says:

    I think, if nothing else, it shows us we aren’t ALONE! Being alone is a scary feeling, and while I am not having the same experience you are having, or have had, and vice versa…I can look at you, and Kyra, and see that you survived the really scary time, and came out ok on the other side…it gives me HOPE. That, at times, is in short supply.

    I think anybody who goes to a patient blog (or parent blog) and takes it at it’s word, and as gospel is doing themselves a disservice. I guess I HOPE that goes without saying…but I’ve met people…and there are some doozies out there.

  4. Kelley says:

    The support, information and sense of comraderie I find here is beyond words. I really am quite literally alone with my AG in the real world and finding this site has given me such a strong sense of community. To communicate with others who understand that panicked fear I get when my AG coughs in the middle of the night, and all of those other things I have to deal with on a daily basis: meds, attempts to avoid exposure to colds, allergens, etc. Just yesterday while I was talking with our manager regarding the need to get our carpets changed due to the lingering cat “residue” her response of course was “well, I’m sure that she’ll grow out of it.” I like knowing that just about everyone has felt the exasperation of hearing that dismissive (and inaccurate) response.
    My AG’s asthma doc is wonderful, but there is just a different aspect to living every day trying to manage your child’s ability to breathe. We live with a diferrent reality than those who have never had a chronically ill child, and the first hand experience is really valuable.
    So, after all of that rambling… I would like to say again THANK YOU FOR THIS SITE!

  5. Sarah says:

    I think that perhaps a better suggestion than “eschew all non-governmental health sites” would be to make sure that people know how to spot the bad ones, and more importantly, understand the importance of fact-checking!

    The fact of the matter is that some so-called “health” websites aren’t only inaccurate, they’re downright dangerous (like the MANY that I found that tried to paint Advair and Singulair like demons in pill form and advocated that anyone on them stop them immediately without even consulting their doctors – who were all in on the Big Pharma conspiracy, of course *eyeroll* – and instead try Homeopathic Load-o’-Crap De Jour / convert to an organic, vegan, or vegan-organic diet / try acupuncutre, shiatsu, or chiropracty/ take megavitamins / whatever other load-of-bull “alternative” therapy they were trying to push, which of course could ONLY be provided by the runners of that particular website).

    Critical thinking and the ability to double check anything that you see is crucial in the internat age, and even more so when what you’re reading might affect your health decisions.

    Websites like this one are very important in the management of chronic illnesses, for all the reasons discussed above. If I didn’t have your blog, I wouldn’t have thought to buy an allergen-proof matress cover (which is now responsible for me being able to sleep well – when I don’t have a cold, at least). If I didn’t have Rick Frea’s blog and MyAsthmaCentral, I wouldn’t have known that my asthma was nowhere NEAR controlled, and so I would have accepted the word of the doctor last spring who insisted that there was no reason I shouldn’t be helped by 125mcg twice a day of Flovent. And sometimes all you need is people to lend a sympathetic ear, offer suggestions your doctor might not think of or tell a relevant anecdote.

    I’m certain that the fact that I’ve reached the level of control I have now is in part due to health-themed social networking sites, like blogs and communities. They’re wonderful resources… as long as you’re careful.

  6. Allison says:

    I totally agree Sarah!

    Doctors need to embrace the internet and know that it’s not going away, that their patients are going to seek solace and information there. So they should be prepared to offer some guidance and direction about reputable sites and encourage critical thinking.

  7. Amy says:

    Samantha–Thank you! And I’m so glad the asthma blog world is growing.

    M–So many of the tips I use came to me from other patients/parents and occasionally, nurses or therapists. Doctors fill a role no one else can, but so do we.

    Sara C–I feel weird in this position sometimes. I remember talking to the parents with older, well-controlled kids during Kyra’s bad years and thinking, “I’m never going to get there.” And now I am there, talking to people who used to be in my shoes.

    Kelley–Thank you for being a part of this! Asthma Mom wouldn’t be nearly as valuable w/out readers like you, asking and answering questions and throwing in your two cents.

    Sarah–I love your entire second paragraph, and I agree both on the critical thinking and on Rick’s blog. He has some great information and insight.

    Allison–Particularly, I wish the medical community would recognize that online communities fill they role they can’t. Some do, but too many are turned off by the disreputable websites.

    Everyone–I keep thinking about the people who DON’T realize the value – or maybe even the existence – of Internet health communities. If they read that research, what are they going to think?

    Why bother, right? If websites will just give them the wrong information, then what’s the point of turning to the Internet in the first place?

    Research that tells people not to assume everything they read on the Internet is true IS important and it reminds me to keep striving for accuracy here, but telling people how to find the good information is crucial, too.

    What a shame if parents/patients miss out on the best part of the Internet–readers like you and communities like this one—if they assume bad information is all they’ll find.

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