Some of you may remember a post I made a few months ago, Emerging Technology vs Old School. I discussed briefly how we have to find ways to incorporate technology into our profession in positive ways. I also touched on how we cannot forget that there are people who do not have access to technology and they ARE getting left behind.
We cannot ignore either group. How can we make sure both groups have access to the same information but in different ways? This is not the main focus of this post. I just wanted to remind readers that even though in this post I focus on resources that are more available to people who have access to technology, we must not forget that not everyone has access.
Facebooking, Twittering, and Blogging are what I think of when I think of social media. Facebook groups can serve as support groups. Blogs can serve as an excellent way to share thoughts and emotions. Twitter can help connect people going through similar situations.
Since I have Google alerts set up on my Google readers I oftentimes run across blogs written by people who have experienced genetic counseling or have children with genetic conditions. I have found that reading strangers’ blog posts about their daily life with a genetic condition and their perspective of genetic counseling has taught me so much more than I could ever learn from reading a textbook.
I get their honest opinion. I learn how misconceptions develop. I learn about different attitudes and perspectives. I learn more about people’s thought processes. This allows me to see their situation from their point-of-view which in turn helps me as a genetic counselor. An example of a powerful blog website is, CaringBridge.
CaringBridge is a blog website that “connects family and friends when health matters the most.”
“Human connection. That’s the heart of the CaringBridge experience.”
I have read several CaringBridge blogs written by parents with children who have a genetic condition. I have also read CaringBridge blogs written by people with genetic conditions. I have read personal stories about how many families are thankful for CaringBridge blogs. It allows them to share news with concerned ones without having to worry about making multiple calls. It allows them to express personal thoughts through writing that they may not normally express which helps with the coping process. It also allows them to find other people who are going through similar situations as they are. It makes people feel less lonely during scary times.
If used correctly, social media could be a great support resource for patients. Social media should NEVER replace actual information or serve as a sole resource. They should simply serve as support resource in the same sense as recommending books and connecting patients who may be going through similar situations.
Would you (or have you) ever suggest social media as a form of support resource for your patients? How do you make sure it’s appropriate for your patient?
Would you ever use social media as a teaching tool for yourself or for genetic counselor students? If so, how do you do this?
The DNA Exchange 
Great post Kelly. There is a relatively new website called http://www.TheSweetOne.ca that has been developed by the parent of an infant with Noonan Syndrome. Working in the adult world, we do get a surprising number of new Noonan syndrome diagnoses. I refer all of my patients to this site. I like that it is Ontario based (so often there are only US-based support group websites for our patients) and that it has been developed for parents, by a parent. Not only is there a lot of valid information provided, but there is also a “community” section where patients and families can connect with one another using social media.
I have pointed out sites like Caring Bridge and CarePages to patients before, for the ease of keeping multiple people appraised of situations with high risk pregnancies, children’s hospitalizations/treatments, etc. Those who are tech-savy can get a lot of support from friends and family through site feedback.
As you point out, Kelly, one concern about various forms of social media from a health provider standpoint is that they can perpetuate misunderstandings and misinformation (as well as provide good information). While I don’t think that diminishes their use as support mechanisms for our patients, I do think that it puts an onus on us to provide our clients with the means to determine the quality of the information they are gathering from all sources. It really comes down to helping to facilitate critical thinking, which can be difficult for a person to consider especially when just having been given a diagnosis.
There are a number of tools available to help people think through the quality of the information they are reading, including one Genetic Alliance, NCHPEG, University of Maryland and other partners have created…Trust It or Trash It? (trustortrash.org). I’m a bit biased because I’ve been involved with the project, but I’ve given it out to families in sessions and used the concepts (who said it? when did they say it? how did they know?) to help facilitate discussion about complex causes (e.g., autism). Giving clients tools, especially when there aren’t clear cut answers, can be empowering to some, I think.
Allie and Kate: Thank you both for the websites (Trust It or Trash It? and The Sweet One). I will definitely check into those. I love when we can share resources. 🙂
Robin: That’s great to hear. I think the Caring Bridge is an excellent place to go online.