Cancer diagnosis can cause major emotional trauma, but it only represents the beginning of hardship for most patients. Aside from treatment, quality of life concerns, and financial hardship, the problem of self-advocacy, or the act of confidently speaking on one’s own behalf, arises.
Self-advocacy is extremely important in cancer survivorship. To receive the best care, patients must be able to make difficult treatment decisions, communicate clearly with health care providers, and discuss their experience with other important people in their lives.
A team from the University of Pittsburgh recently developed, tested, and published qualitative findings on a self-advocacy education tool called Strong Together. Strong Together is a ‘serious game,’ defined as “a game with an explicit educational purpose.” The purpose of Strong Together is to use simulated decision-making to teach and reinforce self-advocacy behaviors among women diagnosed with breast and gynecological cancers.
Lead author of the study, Teresa Hagan Thomas, PhD, BA, RN, described the mechanics of the game, adding that it was purposefully developed to be accessible to patients with differing levels of health and technological literacy:
“In the game, participants follow different characters who are women with cancer. Throughout various scenarios, these characters encounter different challenging experiences related to the character’s cancer including managing bothersome symptoms like pain, diarrhea, and fatigue; communicating personal needs and values with healthcare providers; balancing personal priorities with needs of family members and friends; and navigating healthcare options including palliative care. To move the storyline forward, users face multiple decision points where they must decide how the characters should act.”
In this qualitative review, patients were given a tablet pre-loaded with Strong Together, educated on how to play it, and encouraged to use it for 3 months. They were then interviewed about their experiences using the game and given the option to keep an additional voice journal. Of the original 52 participants, 40 completed interviews and 14 kept voice journals. The mean age of the 40 participants who completed the interviews was 59.9 years old (SD = 12.6). There were 20 with breast cancer and 20 with gynecological cancer.
Overall, the participants reported that using Strong Together was a positive experience. Many reported that it either reinforced or taught them new ways to advocate for themselves. Another common experience was feeling that the game was too short or contained too few story lines. Nevertheless, most were able to relate to the game’s characters, even when commonly reporting that the game’s scenarios did not always directly relate to their own experiences.
Notably, many found the inclusion of palliative care an upsetting experience. Though the American Society of Clinical Oncology currently recommends introducing the concept of palliative care at the time of diagnosis, Dr. Thomas and colleagues stated, “findings from this study raise concerns about introducing palliative care within a behavioral intervention outside of clinical care.”
A clinical trial evaluating the efficacy of Strong Together versus a traditional self-advocacy guide pamphlet was recently completed as part of this study (clinicaltrials.gov NCT03339765). That manuscript is currently in preparation.