Exploring Psychosocial Support Online: A Content Analysis of Messages in an Adolescent and Young Adult Cancer Community

Exchanging support

Emotional support exchanges typically included conversations where members related, provided perspectives, or offered understanding. This most common type of talk centered on treatment, medication, and relationships. Community members tended to offer empathy to convey mutual understanding through stories, thoughts, and feelings (“The same thing happened to me.”). Support developed as a cyclical process whereby one member asked for affirmation (“Am I alone in feeling this angry?”), and then others shared–or at least validated the feelings (“My situation was different, but I understand how you must feel”). Supporting the original poster seemed to serve a cathartic function. By giving support, members received support, contributing to the constructive environment.

Sharing informational support appeared as messages sharing or soliciting knowledge, often about personal experience with treatment, medications, and diet and exercise. Many contributors discuss the forum as an approximate second opinion. Experiences of others appeared to be a trusted source largely treated as separate from health professionals' directives. The popular advice episodes involved: treatment types and side effects, doctor and treatment facility reviews, mental health concerns, and relational issues (troubles with dating, talking to close others about thoughts and feelings).

Coping

Across all types of talk, coping with emotions emerged as a frequent subject. Through humor, positive reframing, or venting, coping involves emotional and informational support. Members joked with each other and laughed at themselves to combat the expressed overwhelming feelings of fear, anger, sadness, and loneliness. For example, one thread entitled “What pisses you off?” included members venting frustrations. Common frustrations included: insensitive or assuming comments from others (“A police man told him he looked pretty good for being sick. He looked at him and paused for a second, then said, ‘Thank you, but the tumors are on the inside.’”).

Members reframed some of the most difficult experiences as positive ones to cope. A silver lining helped make sense of their experiences, attribute meaning, and see it as something that has made life better, not worse—even if it did not feel that way at times. For example, one wrote, “But my thought is if I can help someone else, even just one person, by sharing my story and/or my time, that I'm getting outside myself and somehow helping to make the world a slightly better place for the limited time I'm here.”

Users maintained almost uniform positivity. Positivity and hope persisted even when members were venting or discussing difficult topics, such as the termination of relationships. Contributors fostered this behavior by encouraging people to recognize their lovability or attractiveness, resulting in a community comfortable discussing serious matters in a supportive and realistic tone.

Describing experiences

AYAs in this community used metaphorical and euphemistic language to refer to themselves, their cancer, and their experiences. When speaking euphemistically, individuals referred to “cancer” as ambiguous descriptions of cancer meaning the same thing, including “lump,” “growth,” “dark spot,” and “seedlings.” Losing hair was a “hair cut,” and when it grew back, a “perm.” Treatment was described as “a bike that requires your legs to move it into a purposeful direction.” In one thread entitled, “Dear Cancer: What would you say to your cancer?” members addressed their cancer as a living person. Using sarcasm, one AYA said, “There's bad blood between us now (haha) and I just want to say that I'll beat your face in with my first if you ever come near me again.” Another wrote, “So you see my old little buddy, although I wish you had never come into my life, I do not regret what has happened to me.”

Enacting identity

Cancer was described as a hugely disruptive force that, like a whirlwind, swept in unexpectedly and after treatment often left just as abruptly, initially causing devastation. In general, members reported a dearth of support on how to manage life after cancer, accepting that cancer has changed them forever and restructuring a life they want to live. They struggled to make sense of their personal journeys and self-identities.

These needs are amplified by the way individuals talk about their cancer experience, namely, through personal stories. For example, in one thread about the difficulty of disclosing cancer to a potential romantic partner about cancer, many shared the story of how they told someone they were interested in. Other stories are about the cancer journey from life before cancer to life post-treatment. In the end, once treatment ends, many members report struggling with depression, strained relationships, and maladjustment to work, although others describe a more meaningful outlook.

Communicating membership

One community-building function of the online support group involves talk that signifies who is and is not a member of the community. The first theme, establishing membership, occurred when individuals legitimized their presence on the site by stating reasons for use. This typically included background information and served as a way for individuals to introduce themselves to the community.

Often, AYAs discussed noncancer patients as out-group members because they could never understand having cancer. In addition, AYAs signal closeness to other community members—the in-group—by showing appreciation and giving compliments. For example, one said, “I have found that this site has been undeniably the most helpful thing for me…I am so glad I found this site.”