Online cancer forums and social media platforms are an important source of information and support for cancer patients and survivors. If you’re a regular Brio reader, you know I’m nothing short of obsessed with ensuring the information we supply to you and the design and content of our programs is justified by medical evidence. The intent of this writing is to briefly review my research into whether perceived benefits of online programs and support for cancer survivors are supported in the medical literature.
I’m an Oncology Nurse Practitioner and see patients every day in the oncology clinic at a large academic comprehensive cancer center. I know first hand that cancer patients are among the most sophisticated health consumers and for good reason; their very life depends on actively participating in their care. I’m happy to say that overall, my research into online support for you is widely positive; online forums and information gathering have the effect of activating patients and survivors to participate in their cancer care planning, which results in empowerment and improves emotional well being. Everything about this is good, especially when a person is feeling vulnerable and powerless in the face of cancer and upon entering survivorship.
How Cancer Survivors Use Online Support
The cancer survivor population is growing. By 2050, there will be 50 million cancer survivors in the United States. Cancer survivors experience increased levels of life distress that require a proportional level of professional support and predictably, future access to needed services will be problematic. Online peer support forums are perfectly poised to fill the gap.
Online survivorship support programs are extremely convenient. They allow access to support for those who may not otherwise have it, particularly survivors who are isolated geographically or have transportation challenges. Online support is also an excellent option for cancer survivors less inclined to join an in-person group due to busy work and family lives, unusual work hours, or a desire for higher levels of anonymity.
In a paper in the Journal of Cancer Survivorship in 2017 entitled Navigating cancer using online communities; a grounded theory of survivor and family experiences, the authors studied why and how cancer survivors used these online communities. They found that:
Cancer survivors were motivated to navigate cancer online because they experienced an information void after diagnosis. Being overwhelmed by the large amount of information given to them in such a short period of time, they used online forums to fill in the blanks and increase their understanding of the disease.
They were also motivated to navigate cancer online due to the experience of change. The online forums gave an opportunity to learn ways of coping with change through others’ experiences.
Cancer Survivors were also motivated to use online forums to gain a feeling of control. The chaos caused by the diagnosis drove them to seek an understanding of what was in store for them to decrease the uncertainty of the future.
The motivation to become involved resulted in positive experiences with online cancer support. The cancer survivors experienced feelings of being on a journey to become informed, a journey toward a new identity after cancer, and a journey into different worlds, a result of being welcomed into communities and subcommunities of people online.
The over arching theme here is online communities help cancer survivors engage with others to create meaning around their cancer diagnosis and the experience of survivorship, to empower themselves with information, and to cope with the changing perception of self through the cancer experience.
Lurking Isn’t So Bad
I’m sure you’re all familiar with the concept, depending on what social media channels you use - there are the super-extroverted-ultra-constant social media posters…and there are the lurkers - those that read everybody else’s posts but stay eerily silent themselves.
Lurking in online cancer forums was historically thought of as freeloading behavior, but the above mentioned study actually concluded lurkers are essentially the listeners of the forum and as such, perform a valuable function while maintaining a sense of safety. Furthermore, listening is actually an active process and is beneficial for the lurkers themselves. This has implications for online forums because active and passive participation are both valuable and should be actively encouraged.
A Few Negatives
There are a few survivor populations that may experience distress in cancer forums. One such population are survivors of rare cancers. Because of the rarity of their disease, they may have a difficult time finding survivors with like experiences which may encourage a feeling of isolation.
This same isolation can be experienced by cancer survivors who don’t necessarily embrace the “survivor identity.” The survivor identity is a personal choice influenced by many factors including but not limited to perceived cancer threat, previous treatment, type of cancer, sex, socioeconomic status, and level of education. Those with a weak survivor identity can also feel isolated, encouraging exit from support forums from which they may have benefited. Members and mediators of groups must be sensitive to people affected by cancer who feel isolated by certain definitions or assumptions about survivorship.
It must also be noted that survivors who make friends in online forums experience distress upon the death of new online friends with cancer. This obviously causes grief and fear, making the particpant’s future seem far less certain.
Another concern to note is while availability of online forums increases opportunities for peer support, the forums are often not mediated by a health care professional. Thus, there should be emphasis on health literacy education as defense against improper and exploitative dissemination of false or misleading information to vulnerable survivors.
Social Media Benefits Cancer Survivors
Another paper in the Journal of Cancer Survivorship published in 2017 entitled The role of social media use in improving cancer survivors’ emotional well being: a moderated mediation study concludes that social media can be activating for cancer survivors. When survivors are activated, they’re more likely to become involved in their care and seek beneficial health information. When this activation is paired with good emotional coping, it results in an improved sense of well being.
In my opionion, this is an argument for marrying the online survivor peer communities with survivor wellness modalities that support improved coping after cancer, as this will surely result in greater motivation toward wellness, greater success with peer support and accountability, and better health outcomes for cancer survivors.
I think you’ll agree that online support for cancer surivors holds a lot of promise. I’m encouraged there is adequate research evidence proving cancer survivor peer support is beneficial. After all, it really should be about you. There is healing in telling your story, and there is healing in listening to the stories of others.
I think there is huge potential in creating programs that incorporate cancer survivor peer support and it happens to be what I’m planning here at Brio :). I know, I know - our online coaching and courses are still being developed. I’ll let you know as soon as they’re available. If you want a taste right now of what’s in store, download Brio’s FREE Morning Checklist - A 7 Point Solution to Cancer Survivor Fatigue by clicking the button below.
Take care, Survivor.