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Not Your Grandma's Support Group: Online and Offline Support for Young Adults

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Peer support for people with cancer has traditionally looked like this: a group of people, perhaps women in their 60s, sitting in chairs around a circle in a support group held weekly or monthly, facilitated by a mental health professional.

Peer support for young adults with cancer increasingly looks like this: An organized happy hour. Or a week-long kayaking trip with First Descents. Or Skype conversations with another cancer survivor matched up through Imerman Angels. Or the Twitter feed of Stupid Cancer. Or the Facebook group of any of several organizations dedicated to young adults with cancer.

Many in-person young adult cancer peer support activities are taking place at informal or activity-based settings, from bars to athletic training programs, instead of clinical settings. Meanwhile opportunities for online support provide another way for young adult cancer survivors to connect with one another.

The advantages of online interactions, particularly for young adult survivors, are numerous:

Accessibility: Online connections are easily available regardless of time and place. At any time of day, wherever you are, someone else is on Facebook. And for a cohort that grew up as Facebook and YouTube were created, a cohort that still has the highest rates of social media use of any age group according to the Pew Research Center, turning to social media is easy and natural. Access has become even more ubiquitous now that the majority of cell phone users own a smartphone, according to Pew.

A wide audience: Online platforms also allow access to a much larger network of young adult cancer survivors than you could ever hope to meet in one physical place. Young adult cancer remains relatively uncommon, and in-person programs for young adults with cancer aren't available everywhere. Online communities allow young adult cancer survivors to connect in ways that would be impossible in person.

Idealized communication: It's not just about access and convenience. Online interactions are qualitatively different from face-to-face connections. Joseph Walther, a communication professor at Michigan State University, introduced the concept of "hyperpersonal" online communication in 1996 -- back in the days of dial-up and AOL chat rooms. Walther wrote about how online interactions are often more socially desirable. He described how, without physical cues getting in the way, online interaction allows people to portray themselves more favorably, perceive others in a more idealized way, and create a sense of emotional closeness between strangers.

Less commitment, less awkwardness: Walther has also written about the unique advantages of online support groups. Besides offering 24/7 availability, access to a huge geographically dispersed group of people, and the feeling of "hyperpersonal" communication, online support groups provide a sense of anonymity and allow members to dip in and out at will. Lurking in an online forum -- or even writing your feelings into the abyss of the Internet -- spares you the potential awkwardness and discomfort of going to a traditional support group, where you show your face to a group of strangers, look them in the eye, and spill your guts.

But online support has its limitations too.

Questionable quality: Lack of quality control over the exchange of medical information is one obvious drawback. Crowdsourcing medical questions may be easy and tempting, but in unmoderated forums, it's impossible to know how reliable and valid the answers are.

Frustrations about online communication: A study by UK researchers Angelica Attard and Neil Coulson analyzed postings on an online support group for Parkinson's Disease and found several problems: Some members were annoyed when their posts went unanswered. Some were frustrated at the lack of personal information available about the other members. Some had a hard time when other members would disappear from the site suddenly. Some pointed out that the lack of non-verbal cues led to misunderstanding of messages. And some were frustrated by the inadequacy of support that remains only online.

Of course, Parkinson's is a very different disease than cancer, and the members of this online support group were most likely older adults. But some or all of these frustrations could apply to young adults with cancer. There's no published research yet that spells out the differences between online and in-person connections for young adult cancer survivors. But there are some possible additional drawbacks of online connections suggested by some young adult cancer survivors.

Less fulfilling connections: As much as the physical distance and lack of non-verbal cues makes online communication less awkward and intimidating, it can also make online interaction less satisfying than in-person contact. As participants noted in the Parkinson's Disease online support group study, online support might feel inadequate. Some people might feel that online exchanges of support just aren't as meaningful as a touch, or smile, or the sheer physical presence of another person.

Restricted range of conversation: Also, online support groups may, by default, restrict the topic of conversation to cancer. Participants generally access online support groups to ask cancer-related questions, post articles with cancer-related information, or express feelings related to cancer. By contrast, in a naturalistic setting like a kayaking trip or happy hour for young adult cancer survivors, the conversation can more easily wander across a variety of topics. So it can be easier to get to know people in a well-rounded way.

Selection bias: And finally, there may also be a selection bias in online support groups, whereby the most vocal members of these groups might be the ones who are struggling the most. The "social compensation" model, developed in 2002 by Robert Kraut of Carnegie Mellon, suggests that "those who are introverted or lack social support would profit most from using the Internet" because they would use online connections to compensate for not having enough connections in-person.

The social compensation model has been supported by multiple studies of online support interventions for cancer patients, which found that people with the lowest social support and worst emotional well-being at baseline participated most actively in the online support groups. These findings are good news, in that online groups might help people fill needs that they have trouble meeting in person. But it's worth wondering how this selection bias might skew the content and tone of postings on groups. If the most active voices in online forums are those who are the most isolated, who are struggling the most emotionally, how does that affect the more casual or passive reader on the forum? Does too much exposure to other peoples' struggles become depressing and anxiety-provoking?

In a world where communication is increasingly fueled by social media, where almost everyone on the subway is glued to their smartphone, it's inevitable that much of our social interactions -- cancer-related or otherwise -- take place online. Still, it seems that some aspects of in-person interaction just can't be replicated through a screen.

Miki Moskowitz is a doctoral candidate in Medical and Clinical Psychology doing her dissertation research on social support for young adult cancer survivors. She is always interested in hearing from young survivors. You can reach her at Michal.moskowitz@usuhs.edu.

The opinions and assertions contained herein are the private views of the author and are not to be construed as being official or as reflecting the views of the Uniformed Services University of the Health Sciences or the Department of Defense.

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