AYA Cancer Study

Paper 1: Summary

“I’m So Glad I Met You”: Designing Dynamic Collaborative Support for Young Adult Cancer Survivors by Jordan Eschler, MS and Wanda Pratt, PhD

This is a summary of research findings that were peer-reviewed and published in the proceedings of the 2017 Computer-Supported Cooperative Work (CSCW) conference. I presented these findings on March 1 of this year to an audience of social scientists, ethnographers working in online communities, and technology designers. The full paper is linked here. If you have questions, please email the corresponding author, Jordan.

First, here’s some background to this research. The National Cancer Institute identified three primary psychosocial needs faced by adolescent and young adult (AYA) cancer survivors in its 2006 AYA HOPE report. These needs are as follows:

  1. Overcoming feelings of isolation;
  2. Confronting a sense of mortality; and
  3. Struggling with body image and identity.

In this study, I interviewed 15 AYA survivors in one-on-one, face-to-face sessions lasting approximately 90 minutes per participant. The interview questions asked about informational and emotional needs during the course of the cancer experience. I then analyzed the interview transcripts to articulate themes that emerged related to the three needs listed above. The findings below seek to answer the question: How do we design technology that adapts to the changing psychosocial needs of AYA survivors as they move from diagnosis, to treatment, to survivorship?

Need 1: Overcoming feelings of isolation.

Illustration of “Feeling Isolated” design findings. Overview of the dynamic (i.e., changing) design requirements for helping young adults overcome isolation, such as allowing users to select different criteria to find helpful, appropriate peers during all phases of cancer.

There are two types of isolation I identified in speaking with survivors. Physical isolation is the state of being separated from family and friends due to hospitalization or activity restrictions during treatment. AYA survivors were very adept at overcoming this type of isolation, using social media or synchronous communication technology (a fancy term for Facetime or Skype) to stay connected with family and friends.

The second type of isolation–experiential isolation–is more difficult to overcome. Experiential isolation is the state of lacking peers who understand what a survivor is going through during all phases of cancer. To overcome this isolation, survivors must work to find new peers, usually online, or through a service like Imerman Angels. Furthermore, survivors may wish to connect with peers based on different criteria at different times: at diagnosis, it may be more important to find peers with the same diagnosis; during survivorship, aspects of lifestyle, such as having children or re-entering the dating world, may become more relevant than diagnosis. Finding: technology design should support survivors’ changing needs in finding, and connecting with, “survivor peers” in spaces where informational and emotional needs can be discussed safely.

Need 2: Confronting a sense of mortality

Illustration of “Confronting Mortality” design findings. Overview of the dynamic (i.e., changing) design requirements to help young adults cope with facing mortality over time, including facilitating tasks in acting as their own storytellers, or as emerging advocates.

Adolescence and young adulthood should be a time of beginnings–in the realms of career, family, relationships–but a diagnosis of cancer can feel like a potential, and unexpected, threat of a sudden end. To cope with this need, I found participants made an effort to tell their own stories, controlling the sharing of details and updates. Here, survivors’ behavior ranged from very actively telling their own story (in the form of a blog), to carefully separating their “cancer world” and the “real world” in disclosures on social media, to multiple behaviors “in between” on that spectrum. Finding: Technology design should better support the range of roles that survivors must fulfill in controlling their stories–everything from storyteller, in all of its forms, to the role of more public advocate in survivorship.

Need 3: Struggling with body image and identity

Illustration of “Struggling with body image and identity” design findings. Overview of the dynamic (i.e., changing) design requirements to assist young adults in maintaining public and private spaces, as well as accommodating forgetting as well as remembering.

Cancer can take a physical toll that affects psychosocial needs and the resultant adaptive strategies that survivors adopt. Here, survivors balance the public and private sides of their illnesses, taking measures such as declining to take or post pictures of themselves online (particularly in the case of hair loss, for women), or choosing to keep their diagnosis completely private during treatment.

In the long term, survivor identity may change, as well. Perhaps a survivor decides that she would like to work in public, as an advocate–this requires establishing a public, often online, persona as a public survivor. On the other hand, perhaps a survivor prefers to leave the cancer experience in the past and move on from related traces of illness. Finding: Technology design should support dynamic privacy settings, (1) to give survivors comfort in expressing a changing body image, and (2) to support survivors’ ability to forget, revisit, archive, or amplify the presence of illness in their identity work, according to individual preference.

In sum, this paper was very well received by the CSCW community (it got a Best Paper Honorable Mention!). I thank my participants for sharing their stories, as well as my peer reviewers, who worked with me to make this paper the strongest contribution to the conference as possible.

Did you participate in this research? Looking for more information? Participant FAQ here.