THE BLOG
09/24/2013 11:49 am ET Updated Nov 24, 2013

The Young Adult Cancer Social Network: Why Support Networks Matter

Young people are social beings, but for the more than half a million young adult cancer survivors in America, finding support and guidance through existing social networks can be a tall task. Nonetheless, these young adults try to seek out those connections through whatever means available -- happy hours, young adult cancer conferences, Facebook groups, or other sources. As a doctoral candidate in clinical and medical psychology, I am interested in how social support systems can improve the lives of young adult cancer survivors, a group that is often overlooked and misunderstood.

What kind of support already exists and what is so powerful about these connections?

1) A sense of belonging

Cancer as a young adult poses unique challenges. The physical and psychological challenges of cancer can be accompanied by the isolation and alienation that comes with having a major life experience that none of your peers have faced. It can be hard to relate to your friends who are stressing out about bad dates or workplace politics, while you are wondering how to pay for treatment, trying to preserve your fertility, and confronting your mortality for the first time.

Most research literature on social support focuses on three types of support: emotional support (feeling cared for and loved), tangible support (practical help with things like transportation, meals, etc.) and informational support (information, guidance). But another type of social support is a sense of belonging, a feeling of being part of a group or community. Psychiatrist Sidney Cobb, who first introduced the term "social support" in 1976, talked about how this type of belonging support makes someone "believe that he belongs to a network of communication and mutual obligation." He framed this type of support as stemming from a basic human need to secure a place in a group. As much as family and friends can provide support in some ways, sometimes they just can't help maintain that sense of belonging. Particularly during young adulthood, a stage of life focused on building networks and moving into new social roles, connecting with other survivors can provide a sense of community that eases the loneliness.

2) "Experiential support"

Peggy Thoits, a sociologist at Indiana University, has written about how people who have experienced a similar stressful event can help in multiple ways. They can let you vent, validate your feelings, and reassure you that it's OK to feel the way you do. Also, because they've been in your situation, they can offer specific guidance and advice. This information can prepare you for what to expect and directly help you cope more effectively with problems that arise. And finally, they can give you hope and encouragement -- the sense that "you'll get through this, you can be OK like me." Karrie Snyder and William Pearse, researchers from Northwestern University coined the term "experiential support" from their study of interviews with young breast cancer survivors. They defined this type of support as "the experience and insights of others who have gone through breast cancer themselves."

3) Helping others

Most social relationships are inherently more satisfying when there is opportunity to reciprocate. Usually people don't want to only be takers in their relationships, they want to be givers as well. But cancer can, at least temporarily, force people to take more than they can give. A 23-year-old might just have graduated from college, moved into his own apartment, and started working at his first job -- until a cancer diagnosis makes him move back home, stop working, and rely on his parents again to help get him through treatment. That experience can be a big blow to someone who is just becoming a self-reliant adult. So the opportunity to help someone else can be tremendously powerful. It can help bring back your sense of dignity and self-worth. This idea is similar to Frank Reissman's "helper therapy principle" -- the notion that in settings like support groups, people benefit from helping others with the same problem. This idea is also consistent with research findings that volunteering appears to protect against depression.

But not everyone benefits in the same way from these types of social connections.

Forming social ties is not always easy, and it's not as rewarding or effective for everyone.

What gets in the way of forming connections with other survivors? Why don't some people seek out those connections as much as others?

A) Adequate support already

If someone already feels satisfied and fulfilled by the support they get from friends, family, and others in their existing network, they might not feel the need to reach out to get more support. Similarly, a systematic literature review by Rie Tamagawa and colleagues from the University of Calgary found that cancer patients and survivors with stronger social support at baseline don't benefit as much from formal interventions like support groups and psychoeducation programs. In other words, forming new social connections and participating in structured support activities seem to be most helpful for people who aren't already getting the support they need elsewhere.

B) The desire to move on

Some people who have had cancer in the past look at cancer as something that just happened to them but is not a central part of their identity. They might not want to invest their energy in connecting with other cancer survivors because they prefer to focus on other parts of their identity -- job, hobbies, family, etc.

C) Difficult comparisons

As much as connections with other survivors can be fulfilling and supportive, they are also risky. Maintaining connections with many other young cancer survivors might mean being around other survivors who have recurrences or develop a new cancer. Not only is it hard to watch friends become sick and suffer, but these occurrences can also lead to more anxiety about recurrence, more questions of "what if that happens to me?" There can also be a sense of guilt -- "they have it so much worse than me."

D) Practical constraints

People are busy. It may be too impractical or time-consuming to reach out and build connections with other survivors. Other young adult survivors might not live nearby. Services and programs might be held at inconvenient times and places, or they might be non-existent.

E) A poor match

Every cancer survivor is different. Some deal with long term effects that interfere with daily functioning, some can more or less resume the lives they led before cancer. Some are single and worried about disclosing a cancer history and uncertain fertility status to potential romantic partners; others are married with children, and wonder how cancer will impact their ability to keep up with their kids. Some love meeting people at happy hours, others prefer bonding with others through shared interests like training for a race. Making a satisfying connection with other young adult survivors often requires making a good match. The crux of that good match could vary -- it could be a similar diagnosis, similar long-term effects, phase of life, or outside interests.

There is no "one size fits all" support structure that meets the needs and preferences of every young adult survivor. But having an array of different opportunities to connect with other young adults -- whether that entails regularly scheduled in-person activities, one-time events like conferences or workshops, or communication over social media -- might make it easier for young adult survivors to find the connections that are most helpful for them.

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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