Two themes emerged from participants’ interviews with respect to the importance of mobile applications in the recovery phase of women affected by BC: 1) meaning for the recovery process and 2) maximizing potential utility minimizing concerns in relation to practical aspects of the application. Within each of these themes, three sub-themes were identified, and one to three categories identified within each sub-theme. Figure 1 summarizes the themes, subthemes, and categories, described in detail below.
Meaning for the Recovery Process
Three sub-themes emerged in relation to potential meaning for the recovery process associated with individual or family access to an app for managing health after active treatment: 1) finding social connection and support, 2) enhancing motivation and providing positive reinforcement; and 3) navigating through the treatment/recovery process.
Finding social connection and support
Users perceived a mobile application as a vehicle for connecting with others on a social level and also for giving and receiving support from others. This theme comprised three sub-themes: connecting with others to obtain support, helping others in similar situations, and obtaining information that could help keep the user safe.
Connecting with others to obtain support, particularly around issues that participants did not necessarily wish to contact a clinical professional about was deemed important. For example, one participant mentioned that some people did not like to talk to therapists and being able to talk about their disease and experiences with respect to their diagnosis in a less formal environment may be helpful. Another participant noted,
“I know that’s [mental health] like very important and I know people should have different outlets. This is where they can go because I know some people don’t want to go to like therapists. They don’t talk to anybody. So, I feel like knowing how to talk about your condition or disease will help out.”
Being able to obtain helpful information from other users was also valued, exemplified by one participant who reflected that it would be helpful to connect – not just with other people, but also with a professional for answers to “quick problems and questions”.
Although participants found useful information in talking with others, some participants did caution about the need to maintain perspective and avoid fueling worries when reading about others’ experience. This was illustrated by one participant who noted,
“…And then you want to be careful because you don't want to run into somebody else's horror story. You might not be heading down that path, but all of a sudden in your brain, you've convinced yourself you are.”
During the interviews, many participants described the possibility of helping others in similar situation as beneficial. For example, one participant was diagnosed with BC 20 years ago, when she was in her late twenties observed,
“…And then if I was out of that stage, I would probably, for me, become more of an advocacy position. I was young when I was diagnosed. I wanted to be there for other young patients to say ‘you’re not alone’ … to even anonymously say ‘I’m a real person, and this was my experience, and you’ll be okay. You can have kids, you can breastfeed’”
Participants also emphasized the value of information that could keep them safe during treatment and recovery. As one participant noted, people with cancer are immunocompromised and thus must take special care to avoid large crowds that could put them at risk of infection. A mobile application, she noted, could provide information on safe options for purchasing healthier foods in venues such as farmer’s markets. Another potential opportunity is in providing current information on potential drug reactions. One participant discovered that she was allergic to a carrier in a drug she normally takes. A mobile application, she reflected, could provide easily accessible information on potential drug reactions.
Enhancing Motivation and Providing Positive Reinforcement
Several participants noted that using a mobile application during their recovery process might be helpful in staying on track with healthy behaviors for their recovery, through motivational tools that could be embedded in the application, such as receiving positive reinforcement and obtaining feedback. Participants also discussed the importance of getting regular feedback of how well they are doing, or of their progress. For example, one participant stated that during her treatment, not only was it validating to hear from one of her care providers that she was doing a great job, but it was also important to hear specifically where she was doing well.
Almost all participants identified the value of receiving instant feedback on progress in relation to their stated goals, and the accountability that follows from receiving this feedback. For example, one participant stated, “I like the accountability of it. And I like being able to see [my progress].”.
However, notably, one participant also pointed out that engagement may be due to the newness of the experience, noting that “Data actually confirms what I should be doing, [it is] motivating, but the glitter runs out of everything eventually…”
Navigating through treatment, recovery, and recurrence
The third theme that emerged in terms of the potential meaning of a mobile application was the value in navigating the treatment and recovery process. Some participants described the early part of the treatment process, particularly immediately following diagnosis of cancer as one full of uncertainty. With that uncertainty came the need for practical tools to keep track and make sense of substantial new information. In addition, participants noted that the value of the mobile application could change depending on the stage of the treatment process. In navigating treatment in particular, participants talked about the importance of keeping track of medications they needed to take and of their numerous medical appointments, and the need for having a system to manage this. For example, according to one participant,
“When I was undergoing cancer treatment, I think I had four or five different cancer apps. I had one specifically for tracking medication and telling me what each type of medication did, and any concerns with interactions of medications as well as interactions of medication with like herbs and spices…I ended up transferring all of this to a spreadsheet because it was much easier for me to see it and the whole picture.”
Some participants emphasized the value of being able to reach out to others for support during their treatment process, and a few mentioned the importance of helping others as they themselves had been helped. Support provided for other participants included navigating the treatment process, or helping create a supportive environment for end-of-life care. This, for example, might be made of several dimensions such as navigating through health care systems and synthesizing (or evaluating) information. According to one participant,
“I like the idea [of an app for my spouse and I to use together] because [spouse] was a huge support to me; he was helpful in some physical ways--just being present and physically taking care of me. One of the things that we work on, though, is understanding the emotions of it. He's the kind of person that's straight-ahead, like “Doctor said to do this, Doctor said you're doing great.”
Another point raised by this participant was that the mobile application could be helpful in providing resources to the family member or caregiver:
“We had a conversation the other day where he was finally able to hear. [He said] ‘Oh, it's not about the medical part, I understand that this is hard for you.’. And that's all I wanted. Yeah, acknowledgement. So maybe an app could help do that in a non-threatening way”.
One final sub-theme involved helping coordinate care for others. This sub-theme was illustrated by one survivor who now finds herself helping another BC patient who is nearing the end of life. She noted that a mobile application would be helpful in helping support systems work together to help coordinate meals and appointments for a friend or family member. She elaborated on the potential of an app to help with both communication and scheduling: “…along with 6 other women, I’m caring for my neighbor. And…we’re a village, right...I think add who you want to, and then you have a schedule of who does what…”
Maximizing Potential Utility and Minimizing Concerns
Three specific sub-themes emerged regarding ways in which a mobile application may be useful: 1) creating a user-friendly interface, 2) ensuring credible information, and 3) minimizing concerns, including ensuring the privacy of information, and transparency about the use of data.
A user-friendly interface
Participants discussed the importance of a user-friendly interface and often referenced which apps that they currently use were user-friendly. For example, one participant mentioned a media app that lists her most frequently visited podcasts so that whenever she logs on to the website, it is easy to find relevant information. Another user mentioned the importance of receiving the information using limited text to enable ease of use. Another participant mentioned she found some apps unhelpful, and that she was interested in “very simple” basic information and layout.
Several participants discussed the idea of having some control over certain features. Participants mentioned the need to be able to turn off the features they found unhelpful, or to be able to change the appearance of the app if needed. One participant noted that some of the apps tended to overuse the common pink color for BC, and the negative impact it had on her process of moving past the disease, “The ones that have really bright colors and like saccharine colors…I didn’t really want to see…but you know this pink oversaturation…that’s just a little bit, a little bit too much of a reminder, I think, for me.”
Some participants mentioned that while they already use several mobile applications for different services, a helpful feature would be having all the functions of an application for managing their recovery in one location. This idea was typified by one participant,
“Because something that I’ve really focused on, and also how my food and exercise are tied together…because right now, I track this in a paper calendar and then I transfer it to an Excel spreadsheet, so that [integration] would be really helpful.”.
Another participant also underscored this point, adding that an opportunity for participants to choose some or all of the features to focus on would be an added benefit, noting: “I think everything in one place. I mean if you had the opportunity to focus on and separate what you’re looking for then definitely in one place.”
Importance of Credible Information
Participants provided diverse viewpoints on the importance receiving credible information from a mobile application. Two BC survivors who are professionally skilled in research mentioned that they did not necessarily worry about obtaining credible information from the app, given that they possessed the tools needed to seek out such information. In contrast, several other participants noted that the explosion in recent years in the use of social media around health conditions, it was important to ensure that the information was credible. This concern was exemplified by one participant who commented,
“…a lot of times you come up with other people that have asked the same question and you don't know who's answering that question, so you’re not sure how reliable that information is. So, a professional coach would be way up there because you know my doctors are really good to respond. But I sometimes feel like, oh, I don't want to bug them with just some educational thing, or you know, why does this [feel bad] here or whatever when it doesn't seem like a big deal.”
One recurring sub-themes among most participants was privacy concerns related to data collection and use. Although one participant stated she was less worried about privacy, because she assumed that all applicable regulations would be followed, others expressed different privacy-related concerns. For example, one recounted previous negative experience with privacy breaches that caused her to be more cautious with her shared data. Some participants were also concerned about sharing personal information to the public. According to a participant,
“I did have [a few privacy concerns] …because I did not want to do Facebook. I didn’t want to put my stuff out there. When we went through this cancer process, we put nothing online about it. So yeah, of course – it’s a private matter to me…. I think my limits would be personal numbers about myself: weight, maybe test results, that kind of thing. It’s not so much worrying about privacy as it is managing my personal mental health”.
Another participant underscored the importance of transparency as far as what the data collected was being used noting,
“I know with health care and I’m in healthcare administration, so I know all about HIPAA, but I have never been terribly concerned about privacy. I only don’t like my data being abused. Again, like targeting. But I am happy to give information. And security, I’m just not terribly concerned about it…Obviously like anyone else, I want to be protected. As far as health care…but I would be inclined to give whatever was appropriate or useful.”