Between April 2019 and March 2021, we interviewed 40 out of 52 participants in the intervention group. Reasons for missing data include participant study withdrawal (n = 4), death (n = 3), and missing the 3-month data collection point (n = 5). Completers did not significantly differ from non-completers based on socio-demographic or health history. Interviews ranged from 17 to 46 minutes with an average of 32 minutes. Voice journal audio files were between 3 and 7 minutes.
Participants
Table 2 summarizes participant (N = 40) characteristics. Participants’ mean age was 59.9 years old (SD = 12.6), and they equally represented both cancer types (n = 20 breast; n = 20 gynecologic). Most participants were married or living with a partner (n = 25; 65.0%), White (n = 34; 85.0%), had an associate degree or less (n = 23; 57.5%), and had an annual household income <$80,000 (n = 24; 60.0%).
Table 2
| Serious Game Intervention Group (N = 40) |
| N (%) |
Age (Mean (Standard Deviation)) | 59.9 (12.6) |
Relationship status | |
Married or living with partner | 25 (62.5) |
Divorced, widowed, or separated | 8 (20.0) |
Single | 7 (17.5) |
Ethnicity | |
Latina | 1 (2.5) |
Race | |
White | 34 (85.0) |
Black | 5 (12.5) |
Asian | 1 (2.5) |
Education | |
High school or GED | 11 (27.5) |
Associate’s degree or technical school | 12 (30.0) |
Bachelor’s degree | 9 (22.5) |
Master’s, Professional, or Doctoral degree | 8 (20.0) |
Annual household income | |
<$20,000 | 6 (15.0) |
$20–50,000 | 8 (20.0) |
$50–80,000 | 10 (25.0) |
$80–150,000 | 4 (10.0) |
>$150,000 | 4 (10.0) |
Unknown or declined | 8 (20.0) |
Medical insurance status | |
Private insurance only | 15 (37.5) |
Medicare and private insurance | 13 (32.5) |
Medicaid/Medical assistance | 5 (12.5) |
Medicare only | 3 (7.5) |
Medicaid and Medicare | 3 (7.5) |
Veteran’s Administration | 1 (2.5) |
Financial distress | |
Somewhat or extremely difficult to pay for basic needs | 17 (42.5) |
Cancer type | |
Metastatic breast | 20 (50.0) |
Advanced gynecologic | 20 (50.0) |
Strong Together Serious Game
Most participants were satisfied with the Strong Together intervention and found it acceptable. They noted the intervention’s simplicity, ability to engage during personal time, and the ease of navigating the program. Although some participants found repeating games – a key game feature thought to promote learning – repetitive, others enjoyed choosing different behaviors across the scenarios: “It seems like every time I went back through it, I learned a little bit more” (Participant 57, age 70, gynecologic cancer). When asked who would most benefit from the intervention, participants stated that people who lack personal or family experiences with cancer, lack supportive social networks, or are timid would most benefit.
The major themes describing participants’ interaction with the serious game – including their reflections on how the game impacted their knowledge and behaviors – are described below with representative quotations located in Table 3.
Table 3
Qualitative themes representing intervention acceptability
Theme | Representative Quotation |
Overall acceptability | “I don't have a lot of support. So, while I was working on the tablet, that helps me a lot. When I got my diagnosis, and even after having the hysterectomy and everything before I started chemo, I'm still numb. I just didn't feel anything. Before, I was just going with still not really asking anything, because I'm just the type of person I don't ask for nothing. Yeah. But then you're going through the tablet. That helped me a lot, then I talked with, my case manager and [physician associate]." (Participant 70, age 58, gynecologic cancer) “I am electronically deficient [laughter], and when they handed me that thing and showed me how to work it, I had no problem.” (Participant 33, age 62, gynecologic cancer) “I have people in my family that are very educated and in the medical field, nurses. And we've been through cancer with my mom and my dad and my sister. And I have a huge family, and so I think someone that is not as lucky as I am to have that big of a family and that educated of a family, I think they will benefit from it.” (Participant 2, age 58, breast cancer) |
Seeing myself in most scenarios and wanting more content | “I actually related to several of the things that came up as far as– like I'm terrible with asking for help from people, so it just helped me in that way, to know to maybe ask friends or family for more help.” (Patient 14, age 59, breast cancer) “I wish there would have been more of the scenarios because I got done with them relatively quickly, went back, redid them over again and redid them a couple of times.” (Patient 16, age 63, breast cancer) “I also had my husband do the games which was a major help. If I had access to these games where my grown children or siblings could play the game, I would have done that also, I think sometimes I don't want to ask for help, it's embarrassing, but when my husband did the game, he was shocked, some things that came up on the game never occurred to him.” (Participant 79, age 73, breast cancer) |
Giving me the go ahead to expect more | “I never knew that I could interrupt a doctor to ask a question, to add a new direction to my care.” (Participant 16, age 63, breast cancer) “I realized that I don't advocate for myself. I really don't. Like I said, I advocated for my dad when he was sick. I advocated for my mom. But I didn't do it for myself. And, of course, it was the shock of knowing that I have the cancer. That was part of it. But then I was never one of those people who just jumped right in for me.” (Participant 17, age 61, gynecologic cancer) |
Offering ideas for how to stand up for myself | “I think it's just going through these women's different ways of handling situations. And it gives you different scenarios that you could try and– yeah, just reading it and picking the answers kind of goes into your brain a little bit that would come up if you have that situation in your life.” (Participant 73, age 68, breast cancer) “It's comforting. It helps you decide things about whether to go out, whether to run, whether to go shopping, call your doctor, all of the above. So, for me, it was like an outline of, ‘Wow, this is what I should do.’” (Participant 51, age 68, gynecologic cancer) |
Reinforcing what I am already doing | “It kind of reinforced things, what you should or should not do. And really nice to help others if they want it.” (Participant 58, age 76, breast cancer) “I just thought that was a good reminder for me. I mean, it's just to push because I'm not a necessarily pushy person when advocating for myself.” (Participant 78, age 63, gynecologic cancer) |
Reminding me of what I have | “It made me think about privilege a lot and who is able to afford to not work and still pay rent and do all these things. And so it made me really think about other people's experience a lot more than my own because I'm pretty lucky and I have a really strong support system. And so it just kind of made me mad that a lot of people don't have that. And that even though it was hard for me, it's astronomically harder for other people to make those choices.” (Participant 59, age 38, gynecologic cancer) |
Seeing myself in most scenarios and wanting more content. Participants explained that the game was relatable and realistic. Most participants recognized that even if the characters in the game did not directly match their situation (e.g., age, relationship status), they related to the types of problems the character faced. Some women indicated that they could not relate to the characters in the game. Although the game was not intended to have a first-person perspective or allow participants to personalize the game, when characters’ situations were significantly different from that of the participants, some participants felt the information was less relevant though perhaps useful at a future date: “They had issues that I am not experiencing. But at the same time, I may down the road. So, it was good to know what might be coming as far as other people's experiences” (Participant 33, age 62, gynecologic cancer). Several participants felt compelled to share the game with their family members so that they could experience what they were going through.
The most consistent comment was the desire for more content: “I'd like it longer. Add another chapter, perhaps. I was left with what happens next?” (Participant 80, age 71, breast cancer). Participants offered suggestions for additional challenging situations they would like to see in future versions of the game including difficult symptoms to manage, financial and employment concerns, and learning how to ask for help from healthcare providers and their social network. They also suggested having additional characters with different backstories than the existing characters.
Importantly, three patients had a negative reaction to a scenario that introduced palliative care. These participants were put off by the idea and thought this was introducing hospice or ending treatment. The topic made them feel “nervous” and “squirmy,” making one woman wonder, “Am I going to get to a point where I feel like [ending treatment]?” Since women were newly diagnosed, they did not want to consider the possibility of treatment not working: “I'm not curable, so when you're feeling good and you're thinking positive, I just don't want to talk about hospice and that kind of stuff, you know?” (Participant 2, age 58, breast cancer). However, few of these participants wanted the scenario to be removed, because they agreed that it was an important discussion to have.
Giving me the go ahead to expect more. Several women, especially those not diagnosed with cancer at an earlier stage, noted that they did not realize they could self-advocate. They did not know self-advocacy was acceptable or even desirable by their healthcare providers. Participants reported that the game gave them “a starting point” to get over a reluctance to challenge the care they are receiving or ask for help when needed: “I think it helps you realize that there are so many ways of handling something. And it's not that they're wrong. It's just some of those ways of handling something results in a better outcome. Sometimes, you feel uncomfortable asking a question, and sometimes, it's the best way” (Patient 62, age 60, breast cancer). Other participants reflected that prior to being diagnosed with advanced cancer, they advocated for others but had not yet started to advocate for themselves.
Offering ideas for how to stand up for myself. Because of the game’s realness, women visualized how they could replicate what they observed in the game in their lives. Several women used the game for specific, tangible suggestions. They focused on the game’s language, stating that it gave them the words they needed to speak up and ask for help. Some participants played through the same scenario multiple times to get ideas of how to handle situations they encounter: “It gave you an opportunity to continuously go back and click different answers just to see where it would take you” (Patient 17, age 62 gynecologic cancer). Other participants were less specific in what they took away from the game, sharing broader lessons they learned across different parts of the game: “[It] made me realize how important words are, to use the right words when asking for help. And maybe I have a different situation to what they showed on the tablet, but everybody can relate to that in some way” (Participant 10, age 53, breast cancer).
Reinforcing what I am already doing. For women who already felt they were strong self-advocates, the game validated their current approach to managing their cancer. They referred to the game as a “boost” or a “nudge” that solidified their approach managing their cancer, making them feel more confident in asking questions, insisting on getting the care and help they needed, and asking questions when needed: “It didn't change really how I did anything. It just changed how I felt about doing it. It made me feel like I was doing something right. [laughter] While I had no control over a lot of things, I did have control over how I was responding to things” (Participant 59, age 38, gynecologic cancer). Some women reported learning the need to speak up and insist on aspects of their care when they were diagnosed with an earlier, non-advanced cancer diagnosis or other serious illnesses.
Reminding me of what I have. Some women compared their personal situation to that of the characters and other women with cancer, realizing that they had ample support and skill compared to others with cancer. Several participants noted feeling “lucky” and grateful that they had social support, medical insurance, and supportive healthcare providers. At the same time, it made these participants feel pity for others who lack the resources they have: “It made me feel bad for people who don’t have what I have. I can’t imagine not having family who supports you, and that is who really needs this” (Participant 7, age 63, gynecologic cancer).