Video: Joining and Participating in an Online Disease Support Community

Voiceover: This program is made possible with the support and collaboration of Pfizer Oncology.

Carmen:

Hello again!

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:

  • How to prepare for and join a telemedicine appointment as well as advice for troubleshooting technical issues.
  • And, it’s important to be patient! As with most video calls, it sometimes takes a few minutes for everyone to be able to hear and see each other.

OK, let’s move on. What are the potential benefits of online disease support communities?

Finding support online can:

  • Allow you to connect with support resources from the comfort of your own home. This can be especially helpful for people who live in a remote area, have transportation issues or a weakened immune system.

Online communities can also:

  • Allow you to connect with patients and caregivers who are in a similar situation to share stories, ask questions and discuss shared interests.
  • And, they can serve as an alternative to face-to-face group meetings, which may not be for everyone.

Quincy: Thanks, Carmen! Let’s learn about the types of available communities and groups:

  • Online support communities are like virtual get togethers. These include discussion boards, virtual support group meetings, and private groups on social media platforms, such as Facebook.
  • There are online support communities that focus on a specific cancer, while some focus on cancer support more broadly.
  • Some are open forums while others are closed and require approval by the group administrator.
  • There are also communities that are aimed at caregivers and family members.

Carmen:

  • Because there are so many different communities available, it’s good to start by asking your healthcare team for suggestions. And, if you know other patients, find out what communities have worked for them.
  • You can also check with cancer organizations, including those that address your specific cancer, for their recommendations.

Quincy:

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.

Carmen:

Beyond Facebook, there are several organizations that provide online support. I’ll share just a few:

  • Cancer Support Community’s MyLifeLine allows you to connect with other patients and caregivers 24 hours a day, 7 days a week, through their discussion boards, which are moderated by licensed mental health professionals. Visit cancersupportcommunity.org/ and click on “Find Support” in the top navigation bar to learn more and get started.
  • CancerCare is another resource for online support groups, led by professional oncology social workers. Visit cancercare.org and look for the Find Support link under “Our Services”.
  • And the American Cancer Society offers online support through their “Cancer Survivors Network.” Go to csn.cancer.org to explore their resources.
  • There are also many other organizations and groups that you may find helpful.

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.

  • Links to these websites are all found in the downloadable guide that is associated with this video, check it out when you’re done watching.

Quincy:

Once you have found a support community that seems like a good fit for you, here are a few important factors to consider:

  • Look for communities from established groups and advocacy organizations.
  • Groups that have password-protected sites will be more likely to have policies to protect your privacy and confidentiality.
  • Find groups that are facilitated by a moderator who has knowledge of your disease. Often the conversations on a group focused on your specific cancer will be more tailored to your concerns.
  • A group that enlists a mental health professional and/or health expert to oversee the experience will often encourage people to practice positive online etiquette.
  • And it’s important to note that there are free options available, but some might charge a fee.
  • Finally, asking questions and doing your own research will make you feel more comfortable about groups you want to join.

Carmen:

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.

Quincy:

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.

Carmen:

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.

Quincy:

On to our next video. Join us there!