Fifty percent of the AYA survivors and 90% of the providers/administrators are females. A variety of clinical and administration positions were recruited including n = 3 oncologists, n = 2 registered nurses, n = 3 psychosocial providers, and n = 2 others (i.e., administrator in patient experience and child life specialist). The overarching question posed to providers addressed facilitators and barriers they might encounter related to promoting meditation apps in the clinical setting (i.e., survivorship care). Survivors were asked questions regarding what factors may influence their adoption and use of mindfulness-based mobile apps. Table 1 presents the frequency of factors/themes that emerged for providers and patients. Patient Needs and Resources (Outer Setting), Cost (Intervention Characteristics), Evidence Strength and Quality (Intervention Characteristics), and Reinforcement (Motivation) emerged as the factors most frequently endorsed by the two groups. Several notable differences emerged. While providers reported greater importance of Available Resources (Inner Setting), Culture (Inner Setting), and Networks and Communications (Inner Setting), survivors emphasized the importance of Social Influences (Opportunities).
Table 1
Frequency of Factors Mentioned by Providers and Patients (N = 20)
Factor | Provider (n = 10) | n | | Factor | Patient (n = 10) | n |
Outer | Patient Needs & Resources | 10 | | Outer | Patient Needs & Resources | 10 |
Intervention | Cost | 10 | | Intervention | Cost | 10 |
Intervention | Evidence Strength & Quality | 9 | | Opportunity | Social Influences | 10 |
Inner | Available Resources | 9 | | Intervention | Evidence Strength & Quality | 8 |
Motivation | Reinforcement | 8 | | Intervention | Adaptability | 7 |
Outer | Culture | 8 | | Motivation | Reinforcement | 7 |
Inner | Networks & Communications | 7 | | Capability | Knowledge | 6 |
[Insert Table 1]
Providers
As part of the Outer Setting domain of the CFIR framework, all 10 providers discussed at length patient stressors and needs as well as the lack of easily accessible mental health resources for cancer patients and survivors (Patient Needs and Resources). For example, Provider 1 said “We’ve seen an increase in depression and anxiety related to things going on in the world complicated by the survivorship issues, particularly if there are long-term late effects that people are also coping with”, adding, “We are in a mental health provider crisis, particularly for young adults, and particularly for young adults who do not have a lot of money to pay out of pocket… Once people are in survivorship, it becomes much more difficult to access those services” (see Table 2).
Table 2
Selected Themes Mapped on the CFIR + TDF Frameworks (N = 20)
Framework | Domain | Construct | Definition | Illustrative Quotes - Providers | Illustrative Quotes - Patients |
CFIR | Outer Setting | Patient Needs and Resources | Consideration of the needs and resources of the app's target group (e.g., perceived vulnerability, literacy, language, … availability of hardware, network connection) | “[There is] Anxiety around treatment, anxiety around … what the life looks like now. ... missing out on school because you’re in treatment all the time. Not being able to see your friends; those are really big factors that impact mental health.” (Provider 1) "Finances certainly are big. Not having money and insurance. Some of our young adults don't have family or are not documented. So they have no insurance. They're working menial labor jobs." (Provider 8) | “I think … [my] PTSD is coming from the diagnosis, or an event similar to the cancer experience. … and certain thoughts and fears are…, oh my God, what if this lump is coming back … There’s always this thought like relapse and it’s a very common thought. It’s a very common fear.” (Patient 1) |
CFIR | Inner Setting | Networks and Communication | High social capital within a team, i.e. dimensions of shared vision and information sharing, can contribute to effective implementation through a sense of "team spirit" or "community". | "You're in a team environment in our clinic; you have the patient care associates and the PCs and the regular nurses and nurse practitioners, and we all act together to get the patient through their visit." (Provider 4) | n/a |
CFIR | Inner Setting | Culture | Norms and values, or a mindset and culture of an app provider. | "We ultimately all have the same goal for these kids is to help them as much as we can during their treatment." (Provider 9) | n/a |
TDF | Opportunity | Social Influences | Those interpersonal processes that can cause an individual to change their thoughts, feelings, or behaviors | n/a | “If my provider, my medical professional thinks that it’s best the interest for me to do it, I definitely would give it a try.” (Patient 9) “Coming from the hospital is like a plus. I think for me that would be enough.” (Patient 6) |
CFIR | Characteristics of Individuals | Knowledge and Beliefs about the Intervention* | Perception of a credible external presentation of the app, as well as knowledge of the users how to handle it. | n/a | "I think definitely mindfulness and meditation is helpful. It helps to track harmful thoughts and anxiety" (Patient 1) "If I was being diagnosed today, I think having a meditation app is probably good. … I think meditation should be a part of it [the treatment plan]." (Patient 4) "Mindfulness is a lot about kind of like reconnecting with your body and managing how you feel by being aware of like seeing in the moment and controlling how certain things affect you. 'Cause usually a lot of stuff is out of your control. So it's helping out with like realizing when you can and when you can't really control something. And then working to release whatever physical reactions you're getting." (Patient 5) |
TDF | Motivation | Reinforcement | Increasing the probability of a response by arranging a dependent relationship, or contingency, between the response and a given stimulus | n/a | "Just having an article that lists Okay, you should do this, you should read for like five seconds, you should do this next, that's very boring. It's very monotonous, ... but if there is a video or even a live person speaking...." (Patient 1) |
CFIR | Intervention Characteristics | Cost | Costs of the app and costs related to the implementation of this app, including investment, supply and opportunity costs. Costs should be in relation to the expected benefits, both for the user and the developer. | "Money is often an issue and I don't want to burden the kids or the families." (Provider 6) | "I think cost is the biggest one [factor]." (Patient 7) "Just thinking about my medical bills before, even in the future, or if this were to happen again. Am I gonna be able to afford that?" (Patient 9) |
CFIR | Intervention Characteristics | Evidence Strength and Quality | Description of the current status of previous, scientific findings on the quality and validity of the app. | “There's the problem with the mobile apps as there's a million of them right. You have to have one that's been vetted.” (Provider 4). "Just be very concrete: This is what the scientific research is and the data that supports it, and that it truly can help, what parts do we not know for sure if it's helping or not, and just being very kind of scientific about it." (Provider 5) | If it really helps you, helps your mental state, then I’d be willing to pay however much because it's actually helpful.” (Patient 10) “I would say that I’d be more encouraged to use it if I could see some evidence behind it.” (Patient 2) |
CFIR | Intervention Characteristics | Adaptability | Description of the extent to which core components of an app can be adapted, tailored, refined or newly developed to individual or local needs. | n/a | "I do like whenever they explain the logic behind like why it works in a way we kind of understand, why are you doing what you're doing." (Patient 5) "The only thing I wish that some of the meditation sessions would be shorter towards the end. ... I'm fidgety, my mind just wanders all the time. ... I guess shorter bites of meditation will be better." (Patient 7) |
CFIR | Process | Planning Engaging | Apps should be implemented according to plan. & Attracting and involving appropriate people in the implementation and use of the app through a combined strategy of social marketing, education, role modelling, training and other similar activities. | "I think there needs to be an introduction, or like a class or tutorials about what meditation is, what mindfulness is, what it's not. ... We have regular meetings before we start our clinic, a huddle, where they go through what everyone is doing. So maybe if everyone else is talking about it [app], and you're the only one not doing it, you know, maybe you'll try it too." (Provider 4) | n/a |
*Combined with Knowledge in TDF |
Cost, part of CFIR’s Intervention domain, seems to overlap some of these concerns. For example, the cost associated with mental health care was another prominent topic mentioned by all ten providers. There was a shared understanding that for a mental health app to be useful to patients, it needs to be freely available to them (e.g., Providers 6 and 8). Another intervention-related factor discussed was Evidence Strength and Quality; providers discussed the need for evidence-based research on the validity of mental health apps. Some providers expressed skepticism regarding the evidence of mindfulness apps: “Most people don't understand it, and physicians are going to be the exact same way. They're [physicians] going to have their preconceived biases and think it's about being like some hippie in the woods” (Provider 6). Furthermore, they note the importance of making evidence-based literature available to them: “There're articles in the medical journals that are about it… send in that kind of stuff to them [physicians] from time to time reminding them that we have the [mindfulness app] study that's available. Because often patients will take what the physician says as more relevant than what other people might say” (Provider 6 about physicians). Several providers stressed the importance of utilizing a “vetted” mindfulness app: “Meditation has a lot of solid research attached to it. Now it's more acceptable. They’re really gonna have to show it's evidence-based because they do not want to be associated with [lack of evidence], which is how most of what my mind body stuff is today” (Provider 1). In general, providers are receptive to learning about new evidence; Provider 10 discussed, “I would be happy to hear about the evidence behind a meditation app if there was ‘showcasing the evidence behind mindfulness is vital in its promotion…’ to really show that [it works is to say], look, this is the data, these are the trials, this is what people have studied, this is the outcomes. Because that at the end of the day is where we make most of our decisions. It's utilizing evidence-based medicine” (Provider 5).
As part of the Inner Setting domain (CFIR), providers strongly voiced the need for a supportive leadership and company culture (Structural Characteristics and Culture), open communication among the care team (Networks and Communications), and education about the implementation of such an app (Readiness for Implementation). For example, Provider 9 praised the formal and informal communication within the department (Networks & Communication): “We meet weekly to talk about our patients to see if anybody has any concerns and it’s a good way to sort of just make sure that we’re all on the same page.” Provider 8 also highlighted the importance of communication among care team members: “Because this is such a team approach that we do that even if it's a family that I resolve everything [with]… it's still something that I'm going to share with the rest of the team so that the next time they come in that they can be involved and be a support.”
Available Resources (Inner Setting) are another key element in the care and support of survivors: “We give that passport for care, with all their instruction sheets of all the potential late effects that can happen. There are things on mental health and post-traumatic stress there. I call it their ‘encyclopedia for health…’ And just leaving the door open, knowing that they can always call the social workers or the psychologist, and if they need assistance or things aren't working or going in the way they think and they need to come talk to somebody, the doors are open here” (Provider 3). Provider 4 shared “We have a lot of resources in this cancer institute. We have a licensed social worker for counseling onsite. We have a licensed psychologist. We have access to a young adult psychiatrist where we can prescribe medications” which further highlighted the strength of resources dedicated to the implementation and ongoing care of survivors.
Further, providers noted that the promotion of the app needs to be reinforced (Reinforcement in TDF) among the care team to help staff stay aware and informed of any changes and updates. Provider 1 pointed to the advantage of mental health apps as they are easily accessible, “even if they’re [patients] not with us,” however, cautioned that these services must be provided by “people who understand the impact of cancer on survivorship” which again spoke the direct relationship with the Evidence Strength and Quality of the app (Intervention Characteristic).
One cannot assume that mindfulness is a known entity even among healthcare providers. The authors noted that education is a crucial element in successfully implementing the broad application of mindfulness apps within the hospital system. The entire care team including physicians, nurses, and staff should be part of educational efforts to seamlessly introduce the app and to speak with ‘one voice’ when promoting the app to cancer patients (Provider 4). Provider 6 shared: “It is important for providers that not all of them [patients] necessarily are going to use it. They’re [patients] also going to have some misconceptions about meditation and mindfulness. Giving them some of the neuroscience behind it and the brain research that is done about it and giving them more of the hard facts as opposed to oh it's really helpful.” In sum, promoting and implementing an app hospital-wide would surely require education integrated with the Process domain as outlined in the CFIR framework. This highlights providers’ goal of “…teach[ing] our patients they have to advocate for their own health with their own healthcare providers. That's what we try and do… we're trying to do is to make them independent and taking care of their own health needs” (Provider 4).
[Insert Table 2]
Patients
Like providers, all (n = 10) AYA survivors expressed the relevance of stressors and needs, sometimes years and decades after treatment (Patient Needs and Resources). Patient 8: “My biggest hurdle was… learning different coping mechanisms to deal with PTSD, experiencing flashbacks, dealing with hospital settings and things of that nature. I think all of that really affects you going forward and trying to get back to whatever your life will shape out to be when you’re done.” This is underscored by Patient 1 who shared that they are still “dealing with complications from late effects… even like 15 years after completed treatment because of my leukemia and side effects as a result.”
Cost is a consensus concern and survivors were cautious about their choices. Patient 7: “I think costs are the biggest one, time and for me personally depending on whether it's an app or [in]person location… I have little vision and I’m unable to drive, getting to some places is very either hard or expensive.” Free trials could be enticing and allow survivors to use the app without commitment; Patient 10 mentioned: “I feel like the best situation would be you kind of get a test trial. See what the app is like, and then go from there.” Aligned with Patient 9, survivors want to know if it does work before making any further commitment, which reflects the importance of Evidence Strength and Quality; Patient 1 suggested: “For me, it will be nice to see empirical evidence. Let's say this app out in the market is tailored just for survivors. If there is some research that let's say improves the mood of these patients or these survivors by, I don't know, about 12% or 20% versus prior to using the app, that might pique my interest a little bit more.” Patient 3 raised the rating aspect of apps: “I try to read all the comments to see how they will do. And then I would consider.”
Individual factors such as motivation to use mindfulness apps are apparent. Patients emphasized the importance of Reinforcement (Motivation in TDF) in terms of app features and content. Patient 1: “It's about the app being interactive and engaging,” explaining further “having that interactive component I think is essential.” Another patient discussed the advantage of a “live” element: “I like a live chat… [where] we can really speak to another person and then meditate with them.” Another survivor: “I think it'll be really cool to have somebody else I can communicate with and meditate with” (Patient 3). Patient 4: “I think it would be helpful if there was a survivorship section not necessarily totally related to cancer. There's a lot of chronic diseases and illnesses that can go through with various degrees of daily impact on their daily lives. It doesn't necessarily have to be tailored to young adult cancer survivors. In my opinion, maybe people who have chronic medical issues or diagnoses who are young adults… It would be good to have people who have that history. As a survivor, or as a person who has a complex medical background, I think separating it by different stages of life as well would be helpful.”
Additionally, the trust survivors have in their clinicians makes them more amiable in giving mindfulness a chance (Social Influence in TDF). For example, Patient 4 noted, “I would say if my doctor and oncologist’s office suggested it and recommended it, that’s good enough for me.” Patient 8 shared: “[If the] Doctor tells me, ‘Hey, I think this would be helpful,’ I'm gonna try it.” Their trust in their clinical providers (Social Influence) offset concerns over other important factors (i.e., Evidence Strength and Quality shared by both providers and patients).
In discussing Intervention Characteristics (CFIR domain), Patient 10 expressed the advantages of a mindfulness app (versus going to an in-person appointment; Relative Advantage): “There’s a lot of things that you need to remember [as a cancer survivor]. It’s almost like this constant additional stressor, in addition to all of the other things that you have to do in terms of being alive. That sometimes I do feel like it’s like the straw that broke the camel’s back. So having that [an app] as an alternative avenue to kind of make sure that you’re taken care of and accounted for up to that point would probably be helpful.” AYA survivors also highlighted the need for the app to be adaptable (Adaptability), such as having reminder features (Patient 8), adjustable timeframes (Patient 7), progress tracking, and explanations that provide the logic behind mindfulness (Patient 5). Others expressed that the app should allow for opportunities to connect with others (i.e., forum options; Patient 6). Patient 3 voiced “I think it’d be really cool to have somebody else I can communicate with and meditate with them… [where] I just feel like I’m in a community with everyone who is in the same situation.” These responses elucidate the unique experiences (Patient 5) of cancer survivors. In the context of Social Influence, the ability to connect with others could improve the use of meditation apps. Patient 4 raised the opportunity for a mindfulness app to also serve as a support for the broader family system: “It's a stressful time and not just for the patient themselves, but for any family member that's directly involved or a spouse. It's more than just the individual going to treatment. I think the people who are in that immediate bubble, like immediate family and members, would also benefit from that as well.”