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Voiceover: This program is made possible with the support and collaboration of Pfizer Oncology.
As Quincy and I mentioned in an earlier video, online support communities can help patients and caregivers feel more hopeful, less alone and more informed.
So, how can you find, join and connect to a community that could be right for you? In this video, we’ll guide you through the process.
But first, let’s review what we discussed in the last video. You learned:
OK, let’s move on. What are the potential benefits of online disease support communities?
Finding support online can:
Online communities can also:
Quincy: Thanks, Carmen! Let’s learn about the types of available communities and groups:
Facebook has many different types of cancer communities—some geared to specific cancers while others are more general.
You can find them by typing a related term in the search bar.
For instance: prostate cancer support group. Once you have searched on a term, you will see navigation on the left of the page, with various options, including links to pages and groups.
If you click on “Groups,” you will see a list of groups related to your search term.
Facebook “Groups” can be open or closed. A closed group will require the approval by the group’s administrator or founder. When you have found a group you are interested in, click on the “Join” button.
Some groups will ask you to provide more details about yourself to verify that you are a patient or caregiver. Often, with Facebook groups, you will need to be “approved” before you can view posts or make your own posts to the group.
This may seem too rigorous but, because health information is being shared, it’s in place to ensure privacy is being respected.
Beyond Facebook, there are several organizations that provide online support. I’ll share just a few:
Make sure to ask around and find online support that’s most appropriate for you.
Many medical centers provide resources, and disease specific advocacy groups have online support communities on their website.
Once you have found a support community that seems like a good fit for you, here are a few important factors to consider:
And, after you have joined a group, remember:
While it’s great to go online for support from other patients, be sure you check with your doctor about any medical advice you receive. Every patient’s situation is unique.
You don’t have to post right away, if at all. You can always just read and follow along and, if you feel comfortable enough, share with the group. Just observing others can still be beneficial.
When you set up a profile on any of these sites, remember to adjust your privacy settings so that you can control what is shared online.
Visiting these websites is your choice, you can choose if and when to return.
Thanks, Carmen. And, if you aren’t comfortable in a group setting, you don’t need to abandon virtual support. Many cancer organizations, such as CanCare, can connect you with someone, one-on-one, in a similar situation to provide support.
And you may find that this type of remote support is not for you, and that’s OK too.
Quincy and I have given you a lot to think about, so remember, you can always re-watch this video if you need to review any of the information. You can also download the resource guide that accompanies this video for more details.
On to our next video. Join us there!