Enhancing Resilience in Family Caregivers Using an mHealth App

Keywords

mobile health - mHealth - resilience - psychological - family caregivers - qualitative - research - transplantation - hematopoietic stem cell

Background and Significance

Hematopoietic stem cell transplantation (HCT) is a potentially curative therapy for several malignant and nonmalignant conditions, but it is intense and often associated with life-threatening complications.[1] Accordingly, a dedicated caregiver remains necessary and expected, especially within the first 100 days of the procedure.[2] However, HCT caregivers are often unprepared for this role; it is not uncommon for caregivers to experience significant levels of anxiety and distress, especially during this acute peritransplant period.[3] [4] Thus, this population needs interventions that are sustainable and scalable.[5]

Recently, there has been exponential growth in mobile connectivity and the use of smartphones.[6] A growing evidence base supports the clinical application of mobile health (mHealth) technologies in the health care setting.[7] [8] mHealth serves as a platform for delivery of multicomponent interventions, as well as capture of continuous, real-time sleep and activity. The HCT setting[9] provides an ideal “model” to rigorously test an mHealth intervention due to (1) high level of engagement by HCT caregivers, (2) intense and rapidly evolving caregiving needs of medically fragile patients, and (3) long hospital course followed by frequent outpatient follow-up that allows for high-resolution data collection with minimal additional burden.[10]

Inspired by this vision, our team was an early adopter of mHealth technology to enhance the resilience of the HCT individuals we serve. Over the past decade, we successfully developed an mHealth platform (Roadmap) by partnering with patients, caregivers, and health care providers in iterative cycles of user-centered design to define requirements and design.[10] [11] [12] [13] [14] [15] [16] [17] [18] [19] [20] [21] [22] The existing platform offers a menu of resilience-building activities that are centered on a positive psychology framework[23] [24] designed to foster individual strengths and protective variables (e.g., optimism, gratitude, positive emotions).[25] This platform also collects digital signals through wearable sensors and self-report outcomes.

The positive aspects of caregiving, such as self-efficacy and positive attitudes toward the caregiver role, may provide insight on caregiver self-care and self-management.[26] Simple strategies aimed at enhancing positive thoughts, emotions, and behaviors have been shown to be effective and highly scalable.[25] [27] [28] Daily positive reflection, journaling, and conducting acts of kindness have been used in various clinical settings.[29] [30] [31] [32] [33] [34]

The Roadmap app is currently being tested in a randomized trial.[15] The caregiver population was randomized to the intervention and control versions of the app, while the patients only received the control version. Thus, interviews were solely conducted with the caregivers of the dyad pair. Collecting user feedback through semistructured qualitative interviews immediately after completing the 120-day study period was part of the a priori trial design. Accordingly, users were invited to participate in qualitative interviews and share their experiences with using the app. In this study, our objective was to assess its utility in fostering resilience. We sought to examine users' views and preferences, identify the most/least useful components of the app, and evaluate design considerations and app enhancements for future studies.

Methods

Study Design and Setting

This study is part of a multiphase project, which is currently testing the Roadmap app in a randomized trial of family caregivers and their patients undergoing HCT at the U-M Blood and Marrow Transplantation Program.[15] The study setting is located within a Midwestern academic medical institution (Michigan Medicine, Ann Arbor, MI) with an active status date as of September 2020.

Recruitment and Enrollment

Eligibility for study participation of caregivers included age ≥ 18 years and self-reported as the primary caregiver of their HCT patient. Patients were required to be at least 5 years or older and receiving HCT care at the U-M Blood and Marrow Transplant Program. While the intervention specifically targeted the caregiver, both members of the dyad (i.e., caregiver and patient) had to agree to participate. Additional eligibility requirements included both members having access to necessary resources for participating in an mHealth technology-based intervention (i.e., smartphone/tablet and internet access) and being willing to use personal equipment/internet for the study. All participants signed IRBMED-approved informed consents/assents within the Roadmap app (provided in English language only). All study procedures included remote recruitment, enrollment, and follow-up with no in-person contact. For the qualitative study herein, caregivers of adult patients (age ≥ 18 years) only were recruited to participate in interviews from the U-M Blood and Marrow Transplant Program between June 2021 and April 2022.

Study Procedures

Roadmap and Fitbit apps: The design and development of Roadmap have been previously published, including graphical images of the app (https//:www.roadmap.study). Once participants (caregivers and patients) consented and were enrolled in the study, they (caregivers and patients) were onboarded through a Health Insurance Portability and Accountability Act (HIPAA)–compliant Zoom at U-M platform (https://its.umich.edu/communication/videoconferencing/zoom). Participants were instructed to download Roadmap and Fitbit apps on their smartphone or other mobile device (both free of charge and publicly available via Apple and Google app stores). Participants were explained to enter a Mood score once daily (“How has your mood been today?”: 1 [worst possible] to 10 [best possible]) and to interact with the app freely throughout the 120-day study period. As previously described,[15] family caregivers were randomized 1:1 to either the treatment arm (full-version of Roadmap) or the control arm. Roadmap's full-version included (1) eight positive activities ([Fig. 1]), (2) chat forums, (3) informational resources, and (iv) graphs (mood, sleep, and steps). Roadmap's control version included graphs only (i.e., no access to positive activities, chat forums, or informational resources; [Fig. 2]). All patients received the control version of the app.

Fig. 1 Roadmap resilience-building activities. The eight resilience-building activities include Positive Piggy Bank, Gratitude Journal, Savoring, Pleasant Activity Scheduling, Random Acts of Kindness, Signature Strengths, Love Letters, and Engaging with Beauty.

Fig. 2 Main components of the Roadmap app. The full-version of the app includes eight resilience-building activities, Chat Forum, Graphs, and Resources; the control version of the app includes the Graphs and Settings information only. Note: The full-version of the app includes eight resilience-building activities, Chat Forum, Graphs, and Resources; the control version of the app includes the Graphs and Settings information only. This figure was adapted from Figure 1 in Rozwadowski M, Dittakavi M, Mazzoli A, Hassett AL, Braun T, Barton DL, Carlozzi N, Sen S, Tewari M, Hanauer DA, Choi SW. Promoting Health and Well-Being Through Mobile Health Technology (Roadmap 2.0) in Family Caregivers and Patients Undergoing Hematopoietic Stem Cell Transplantation: Protocol for the Development of a Mobile Randomized Controlled Trial. JMIR Res Protoc. 2020 Sep 18;9(9):e19288. Doi: 10.2196/19288.

Wearable sensor: Fitbits were mailed to the participants' homes. They were instructed to wear it continuously, except while charging, to measure their physical activity, heart rate, and sleep during the 120-day study period. The Fitbit data integrated with the Roadmap app through the Fitbit API (https://dev.fitbit.com/build/reference/web-api/).

Interviews: Family caregivers were invited to participate in one-on-one semistructured qualitative interviews with research staff trained in qualitative methods, immediately following their completion of the day 120 (end-of-study) self-report assessments. Thirty family caregivers participated in the poststudy interview sessions: N = 15 (50%) received the full version of the app (treatment arm) and N = 15 (50%) received the control version of the app (control arm). Interviews were conducted using the HIPAA-compliant Zoom at U-M platform (https://its.umich.edu/communication/videoconferencing/zoom). Interviewers used open-ended questions that encouraged responses through prompts and probes, and incorporated pauses and reflective listening. Participants received US$20 upon completion of the interview. Recruitment ended once it was determined that no additional data were being identified that informed new thematic categories. Saturation is defined in qualitative research as a criterion for discontinuing data collection and/or analysis.[35]

The interviews lasted approximately 20 minutes. The interview script and codebook were developed by E. S., L. R., and A. L. H., and minor iterations were made to adjust for clarity of the questions after review/piloting the script with the rest of the research team ([Table 1]). The sentence structures were refined to make the question as well as potential probing questions clear. All interviews were audio-recorded, professionally transcribed verbatim (Babbletype Inc., Philadelphia, PA), and redacted for anonymity.

Table 1 Roadmap codebook

Code	Abbreviation	Definition	Example
Burden of participating in the study	Y-BURDEN	Caregiver describes a medium to high burden of participating in the study and/or rates burden above 5	Code was not used
No burden of participating in the study	N-BURDEN	Caregiver describes little to no burden of participating in the study and/or rates burden below 5	Interviewer: How great was the burden? Respondent: Oh, there was no burden. It was easy go. Interviewer: How would you rate the study burden on a scale from 1 to 10, with 1 indicating the study was not burdensome at all and 10 indicating the study was extremely burdensome? Respondent: I'd have to go with a 1.
Learning to use the Roadmap app	LEARN	Caregiver comments on how they learned to use the Roadmap app	Interviewer: First question is, how did you learn to use the app, and how can we make this process easier? Respondent: I learned to use the app by just instruction. Someone went over the app with me reading the instructions, and trial and error
General experience with the App	GEN	Caregiver comments on their general experience with the Roadmap app	Interviewer: How did you feel like your experience with the app was? Respondent: Good. I check it all the time, make sure I'm doing what I'm supposed to do. Like I say, I've had Fitbit before, so I knew how to navigate the app and was real comfortable.
Positive aspects of the app	POSA	Caregiver mentions something positive about the app	Interviewer: How would you rate this on a scale of 1 to 10, with 1 indicating the activity was not beneficial and 10 indicating that it was very beneficial? Respondent: Very beneficial. It's something that you take for granted. You do something every day and say, “I'm fine. I'm fine. I'm fine.” Then it's like, “Oh, no.” I did not take time to paint my nails. I did not take time to sit in the bathtub. I did not take time. Yes, that was a 10.
General positivity	POSG	Caregiver mentions something beyond the app that resulted in general positivity	Interviewer: Could you tell me a little bit of why you rated the activity this way? Respondent: I'm a positive person and I thank god every day for everything.
Negative aspect of app/study	NEG	Caregiver mentions a negative aspect of the Roadmap app or the study	Interviewer: How did you learn to use the app? Respondent: I had a terrible experience with the app. I didn't interact with it much at all because of my experience. I don't know if it's just my technical inability or what, but I think we had phone… We interacted over the phone.
General suggestion	SUGG	Caregiver makes a suggestion about altering an aspect study	Interviewer: How could we make the learning process easier for you? Respondent: Maybe some more information about how to actually go into some of the possibilities.
Suggestion about the Roadmap app	SUGG-A	Caregiver makes a suggestion about altering an aspect of the Roadmap app	Interviewer: You think that adding push notifications would help you with the activities as well? Respondent: Yes. Interviewer: You wouldn't just ignore them? They would be helpful, you think? Respondent: Yes, I think so.
Intuitiveness of app	INTU	Caregiver describes the Roadmap app as intuitive to use	Interviewer: How do you feel about the complexity of the app? Do you think it was intuitive? Respondent: Yes
Complexity of app	COMP	Caregiver describes the Roadmap app as complex to use	Interviewer: Are there any ways that we could simplify using the app or the experience itself? Respondent: I don't think so. I have to say that the surveys are a little complicated at times, the questions and to give the correct answer. Sometimes the questions were a little off, as far as I was concerned. I answered them the best I could but I thought that some of the questions were not well-stated. Let's put it that way.
Confidence using app	CONF	Caregiver mentions general confidence with the Roadmap app and features that contributed to their confidence	Interviewer: How confident did you feel using the app? Respondent: Very. Interviewer: Were there any features in particular that contributed to your confidence in the app? Respondent: I just like the fact that I can wear it and see what's happening, walking and everything else.
Technological issues	TECH	Caregiver mentions technological issues with the Roadmap app	Interviewer: What issues, if any, came up for you while using the app? Respondent: It did freeze a few times. All I had to do was log out and come back in. That was the most, basically.
Activity completion once started	FIN (*)	Caregiver says they always finish activities once started	Interviewer: How frequently did you start an activity and not finish it? Respondent: If I started one, I'm not sure that I didn't finish it.
Activity incompletion once started	PAUSE (*)	Caregiver says that they do not always finish activities once started	Interviewer: How often did you start an activity and then not finish it? Did that ever happen? Respondent: Yes, because I had stuff to do.
Favorite activity	FAV	Caregiver describes their favorite activity and why they favored said activity	Interviewer: Which activity did you like the best, and why did you like this activity the best? Respondent: I liked the looking for things to be grateful for or the looking for beauty.
Adherence to app	ADHERE	Caregiver mentions things the study team can do to make the app easier to adhere to	Interviewer: Is there any reason for that? Respondent: It's the question of it seemed bite-size-manageable, approachable, it fit where I was at, it didn't take too much time. It felt something that would have a benefit without requiring a whole lot of either time or thought or anything else. It was a good match for where I was.
Caregiving defined as providing support	CARE-SUPP	Caregiver defines caregiving as providing support for someone	Interviewer: How do you define caregiving? Respondent: Taking care of the patient, my mom. Being there for her. Actually taking her places, not just having her sit at home and not do anything. She needs to be more mobilized. What else? Try to keep her from thinking the wrong things. To keep her spirits up. I think that's the main thing.
Caregiving defined as meeting needs	CARE-NEEDS	Caregiver defines caregiving as meeting the needs and completing tasks for someone	Interviewer: How would you define caregiving? Respondent: Being selfless and attentive to other people's needs, basically.
Caregiving defined as stressful	CARE-STRESS	Caregiver defines caregiving as stressful or in a negative manner	Interviewer: How would you define caregiving? Respondent: How would I? Stressful. Very, very stressful. I've learned a lot doing this with my husband and stuff. I've learned a lot about me through this, what I can—I don't know how to explain this. What I can actually do, because some of the things that I've had to do for my husband, I didn't think that I would ever need it and I didn't ever think that I would do it.
Increased self-care	SELFC	Caregiver mentions increased self-care as a result of the Roadmap app	Interviewer: How has using Roadmap impacted your ability to maintain a positive attitude, if at all? Respondent: Reminding me to appreciate myself, take care of myself, take time for myself.
Helpfulness of chatting with other caregivers in the app	HELP	Caregiver mentions that the Roadmap app was helpful to chat with other caregivers	Interviewer: How helpful was it to chat with other caregivers while using the app? Respondent: It was good.
Learning from other caregivers through the app	OTHER	Caregiver mentions learning from other caregiver through the chat forum in the Roadmap app	Interviewer: Can you tell me about why it was good? Or helpful? Respondent: It was just nice to know somebody else was there. We were afraid. We were very afraid, because we didn't know what the outcome was going to be. When they first said, “Oh do you want to get on this support group? Do you want to get into these?” It's like, “No.” I don't want to know what's going on out there. I don't want to know what happened to these people. I'm afraid. I feel like I shut the door in the beginning, and that changed when that was available.
Learning from other caregivers external to app	P2P	Caregiver mentions learning about caregiving from means external to the app	Interviewer: To what extent did you learn more about caregiving from other caregivers? It sounded like you didn't talk to them. Respondent: I didn't. I actually talked to my sister who's a nurse. She was a nurse for over 4 years. Interviewer: Did that help you learn about how to caregive? Respondent: Yes, she would give advice on things. The nurses on the floors were good, too.
General optimism or positive attitude	OPTG	Caregiver describes their general optimism and general positive attitude	Interviewer: How optimistic of a person would you say you are? Respondent: I'm very optimistic. Interviewer: What does a positive attitude mean to you? Respondent: Oh, it means the world to me, because negative is not going to get you anywhere. You've got to be positive. Sometimes it's hard. I think you only get back what you put out there. I feel being positive sets you up. I don't know. I just try to be as positive as I can. Interviewer: How often are you able to maintain a positive attitude about your life? Respondent: I would say 95 percent.
App impacted optimism or positive attitude	OPTA	Caregiver describes the impact the Roadmap app had on their optimism and positive attitudes	Interviewer: To what degree do you believe Roadmap has impacted that optimism? Respondent: Definitively Interviewer: Did the Roadmap app impact your ability to maintain a positive attitude? Respondent: Yes, it did. It kept me in check.
App did not impact optimism or positive attitude	N-OPTA	Caregiver states that the Roadmap app did not help or impact their optimism or positive attitudes	Interviewer: What degree do you believe that using Roadmap has impacted your overall optimism? Not at all? Respondent: Not at all. Interviewer: How has using Roadmap impacted your ability to maintain a positive attitude, if at all? Respondent: Normal.
Recommendation of app to other caregivers	RECC	Caregiver mentions that they would recommend Roadmap to another friend or family member who is also a caregiver	Interviewer: Would you recommend Roadmap if you had a friend or family member who was a caregiver too? Respondent: Yes, definitely. I definitely would.
Hospital location	LOC-HOSP	Caregiver mentions being at the hospital in relation to using the app	Interviewer: Then, what was your experience using the app? Respondent: I liked it with us being in the hospital when we were using it. There was some of it that was hard to do, the finding fun things to do and the enjoyable things.
House location	LOC-HOU	Caregiver mentions being outpatient at their house in relation to using the app	Interviewer: Please rate the positive piggy bank on a scale of 1 to 10. Respondent: Let's say 8. I used it more in-house than outside when she first went in for the transplant.
Roadmap	RM1	Caregiver mentions something in relation to Roadmap	Interviewer: Do you know any specific features that contributed to this confidence while using the app? Respondent: I think that medication list. That information about the medications, and the definitions.
Daily app use	USE-DAILY	Caregiver mentions daily use of the Roadmap app	Interviewer: Can you tell me more about your use pattern? How often were you going into the app? Respondent: At least just once a day. Maybe twice.
Irregular app use	USE-IRREG	Caregiver mentions irregular use of the Roadmap app	Interviewer: First, can you tell me a little bit more about your use pattern? How often were you completing activities? Respondent: More often toward the beginning and then it started to fade. I'm sure that's typical. I'm estimating now but I would guess for the first month or so, I did it most days. Probably three-quarters of the days, I'm guessing. Then subsequently it was more scattershot. It probably dropped down to between a third and a half of the days in the last month.
Rare app use	USE-RARE	Caregiver mentions rare use of the Roadmap app	Interviewer: How did you feel about the complexity of the app? Was it intuitive to you? Respondent: Like I said, I didn't use a whole lot of it. I used some of it, but not a whole lot of it
No app use	USE-NOAPP	Caregiver mentions they did not use the Roadmap app	Interviewer: I understand. As part of Roadmap, you were provided the opportunity to complete some positive activities. Respondent: Yes, I didn't do them.

Thematic Analysis

Data were analyzed using a thematic approach, in that our data collection and analyses mutually informed one another. During the first stage of data analysis, initial interviews followed a qualitative content analysis[36] using an open coding method. The transcripts were coded according to each concept (i.e., line-by-line or by paragraph) using NVivo Pro 11 (QSR International, Melbourne, Australia). The research team then collectively generated new codes as significant concepts, and patterns of data (themes) were identified, discussed, and revised. All the members who participated in the thematic analysis followed the phases of thematic analysis: (1) familiarized herself with the data; (2) generated initial codes; (3) searched for themes; (4) reviewed themes; (5) defined and named the themes, and (6) produced the report.[1]

The second stage of data analysis, using new interview data that emerged, resulted in consistent themes and patterns in the data that confirmed our findings. A minimum of two team members took an active role in identifying patterns/themes based on how the data were classified by codes. Common structures and themes that arose repeatedly through content analysis were identified and organized hierarchically by patterns or structures in the code,[37] which were subsequently further grouped together in overarching themes. The final interpretation of codes and themes were completed by all of the co-authors (E. S., L. R., A. J., C. R., A. L. H., S. W. C.).

Results

The median age of the sample was 58 years (range, 23–82). The majority were female (N = 23; 77%), White (N = 25; 83%), and spousal caregivers (N = 22; 73%). Additionally, up to 80% had at least some college or higher degree (N = 24), with a median income bracket of $50,000 to $74,999 ([Table 2]).

Table 2 Participant demographics

	Total (N = 30)	Treatment (N = 15)	Control (N = 15)
Median age in years (range)	58 (23–82)	60 (23–71)	55 (31–82)
Gender
Female	23	12	11
Male	7	3	4
Race
White	25	14	11
Black	4	1	3
Other	1	0	1
Ethnicity
Hispanic	1	1	0
Non-Hispanic	29	14	15
Annual income
< $10,000	2	1	1
$15,000–$24,999	1	0	1
$25,000–$34,999	6	2	4
$35,000–$49,000	1	0	1
$50,000–$74,999	6	4	2
$75,000–$$99,999	4	1	3
$100,000–$200,000	8	5	3
> $200,000	2	2	0
Education
High school or GED	6	2	4
Some college or 2-year degree	11	6	5
4-year college degree	5	2	3
More than 4-year college degree	8	5	3
Relationship
Spouse	22	11	11
Parent	4	2	2
Child	3	1	2
Sibling	1	1	0

Major themes that emerged from the interviews with illustrative participant quotes are detailed in the following.

App Use

Overall, the majority of participants treated across both arms indicated their consistency in entering daily Mood scores. However, those randomized to the resilience-building activities reported inconsistency and variability in use throughout the 120-day study period, ranging from “none” to “some” and “routine.” For some caregivers, participating in an mHealth study to enhance resilience was not high priority, particularly in light of the demands of caregiving from the HCT procedure itself. Nonetheless, Gratitude Journaling, Pleasant Activity Scheduling, and Engaging with Beauty were the three most commonly used and helpful activities, indicating perceived benefits (i.e., allowed for reflection). The Love Letter activity was rated the least used.

Interviewer: Were there any features in particular that aided in that confidence you had?

“I like the automatic-ness of it [the Roadmap app], where it was recording a lot of stuff. The prompt for the Mood was effective. Otherwise, I think I would've forgotten a lot of days to do any kind of feedback in that way. Again, the Gratitude Journal and some of the journals were more difficult. They were easy to do while we were in the hospital. I had more time. Once I got caught up in my life, not so much.” [CG189]

Interviewer: This next set of questions talks a little bit more about the activities and then moves into optimism and caregiving. First, can you tell me a little bit more about your use pattern?

“More often towards the beginning and then it started to fade. I'm sure that's typical. I'm estimating now but I would guess for the first month or so, I did it most days. Probably three-quarters of the days, I'm guessing. Then subsequently it was more scattershot. It probably dropped down to between a third and a half of the days in the last month.” [CG170]

Interviewer: What was your experience using the app?

“My problem, and I already said this before, it was so low on my priority list. It's not a fault, but it's just so low on the priority list. I would just once in a while …” [CG39]

Interviewer: What features of the app felt most impactful to you?

“(Gratitude Journaling) that was probably the one I used most.” [CG195]

“The most impactful (features of the app) to me was like I was saying, the routine of home care, that was extremely important to me.” [CG009]

Interviewer: Did using the Roadmap app change your perception of caregiving at all?

“I think the change using the Roadmap was that it made me think about how I feel and it was good because it was noted and that was good, because every now and then throughout the day I would review it to see how I felt a week ago or a few days ago. It would also cause me to take a pause and say, 'What happened this day versus what's happening right now?' Know what I'm saying?” [CG033]

These quotes highlighted the variability in use and impact of different components of the Roadmap app for caregiver participants. In addition to these, caregivers also highlighted the usability of the Roadmap app.

Ease of Use

All of the participants, irrespective of their randomization assignment, agreed that the study did not place any additional burden on them. The majority of users randomized to the treatment arm reported ease of use and confidence in using the app, indicating that it was straightforward and simple to navigate. They did not find any harm in the app's features and stated that they would recommend it to other family caregivers.

Interviewer: What features contributed to your confidence using the app?

“It was pretty self-explanatory. I think I was shown the first day of the study, but it was pretty easy to navigate…. I definitely would (recommend Roadmap to a friend or family caregiver).” [CG024]

Interviewer: Were there any particular features that contributed to that overall confidence in using it [Roadmap app]?

“I liked the presentation of the app. It's inviting, simple.” [CG009]

Interviewer: What was your overall experience participating in an mHealth study?

“It was good. It's easy to use. It's not too complicated. It was easy to use and fun to use (Savoring Activity). When I didn't have anything to do, it was good to just start doing it to see what was going on.” [CG17]

Caregivers unanimously agreed the Roadmap app was easy to use. Additionally, they were able to highlight factors that influenced their use patterns.

User Experiences: Facilitators of and Barriers to Use

Several participants noted features of the app that facilitated use: notification prompts of the daily Mood score, record-keeping entries of the activity, self-monitoring (mood, sleep, activity), and ability to create a new routine by incorporating the app's activities into daily activities.

Interviewer: Just to get rolling here, what was your overall experience participating in a mHealth study?

“I'm in my late 60s. It was a new experience. (Laughs…) It wasn't difficult. The prompts were there at the end of each day to go ahead and record my mood. I did fall off in doing journaling because I'm used to doing my own journal at home…It was nice to check in on my stats every day. (Laughs…)” [CG189]

Interviewer: Could you tell me a little bit of why you rated the activity [Gratitude Journal] this way [10]?

“I'm a positive person and I thank God every day for everything. It was nice to write it down [Gratitude Journal] instead of, Thank you God for the sunshine… It was more about me and then I could go back and look at them…. Very beneficial... It was a good reminder.” [CG001]

Interviewer: Are there any ways we can make the app easier to adhere to?

“Because I've done it now and because I got disciplined and set myself a schedule to do it and more consistently when I did it roughly the same time of day is what I had to do starting off. Then later on I began to do a little variation of the time, because I was just curious about it. For example, really quick, I'm a morning person so when I get up in the morning, I'm just like, Whoop!” [CG033]

In addition to facilitators, the primary barriers to longer-term uptake centered on (lack of) time, stressful medical events, and caregiver-related demands. Suggestions that users provided to promote engagement included reviewing/repeating the app's features/onboarding processes, designing personalized features (i.e., selecting specific activities), and sending prompts or notifications.

Interviewer: How did you rate the Random Acts of Kindness activity on a scale of 1–10?

“That's one I didn't do either. At the time, when we got all this stuff, it was just overwhelming…. being in the hospital and all this stuff going on. Now that things have calmed down, it's probably more conducive to maybe accomplishing stuff with the app and looking at it a little bit differently.” [CG195]

Interviewer: Can you tell me about your use pattern?

“I think I used it more towards the end of the study, because I really got into it a little bit more into the first month. The first month, I was just preoccupied with a lot of stuff going on around our house and everything. I tried to get into it a little bit more towards the end.” [CG182]

Interviewer: How frequently would you start an activity and not be able to finish it?

“I finished almost every activity. However, often it was very interrupted (Laughs). It might take me a whole week to get one activity done, the way life was going for many months this year. I had to do all the driving, for example. Even if I had time personally, I might not have time. It was one of those. Lots of interruptions (Laughs).” [CG189]

Interviewer: Is there any way we could make those activities easier to adhere to or reduce the barriers to getting in and doing them?

“Maybe a reminder. Maybe not a daily reminder, but like something that would've sparked my memory and said, “Oh, hey, there are other things (activities) you can do in there.” [CG001]

“Maybe even just a little positive message, instead of a reminder that you have something you have to do.” [CG017]

Interviewer: Do you have any ideas about how we can improve the learning process?

“I think …. was system overload. I think a review of it, maybe a week later and just review it at a short time or a couple of days later and say, 'Hey, let's go over this and see what's going on...'” [CG195]

A variety of facilitators of and barriers to Roadmap app use were highlighted by different participants, as evidenced by the quotes. In addition to factors impacting Roadmap app use, we also sought to determine the role of the Roadmap app in promoting resilience.

Perceived Utility of Roadmap in Fostering Resilience

All participants, including those who received the control version of the app (Graphs only), commented on the positive benefits of monitoring their mood, sleep, and steps data. Individuals who endorsed using the resilience-building activities commented on the app's utility in fostering resilience (i.e., the ability to adapt and maintain optimism in the face of adversity) through recording of thoughts, feelings, or behaviors.

Interviewer: Would you recommend Roadmap if you had a friend or a family member who was also going to be a caregiver?

“I think it's something just for you, in a way, to monitor where you are. That's important. I think it's part of self-care.” [CG189]

Interviewer: To what degree do you believe that using Roadmap has impacted that optimism?

“Actually, it (the Roadmap app) helped (maintain optimism) because sometimes when I was getting really frustrated… I like to be the kind of person that writes things down when it bothers me, so that helped, because that's what I do. If something bothers me with my kids, I'll write them a letter and not send it to them, so this helped.” [CG182]

Interviewer: Can you tell me a little bit of why you rated [Positive Piggy Bank] that way [10]?

“Because I needed to reiterate positivity, especially while I was there in the hospital. It just lifted my spirits to go back and revisit the Positive Piggy Bank.” [CG009]

The caregivers interviewed highlighted a sense of resiliency from the app, in general, and were also able to note specific components of the app, such as the Positive Piggy Bank [CG009], that promoted resilience for them.

Discussion

This study reports findings on a sample of participants in a larger, multiphase study that is currently testing the Roadmap app in a randomized controlled trial. Using semistructured qualitative interviews, we sought to identify user preferences while using the app to understand the component(s) that may be influencing user experiences. In this qualitative study, the four themes that emerged about the Roadmap app included overall app use, ease of use, user experiences (e.g., facilitators, barriers), and ability to foster resilience. Interestingly, we found that users across both arms reported benefits of self-monitoring from the Graphs features alone—self-tracking their mood, steps, and sleep. Users described general consistency with entering daily Mood scores and monitoring their data over time. While individuals who received the control version of the app reported benefits, their responses centered solely on self-care and self-monitoring (of mood, sleep, steps). However, individuals who received the full version of the app indicated its utility in fostering positive emotions and optimism through its record-keeping features (of expressive and reflective thoughts or feelings). Indeed, these findings are consistent with recent reports of mHealth studies supporting positive mental health.[8] [38]

Interestingly, some individuals randomized to the treatment arm described how the app created new self-care routines, allowing them to incorporate positive habits in their day-to-day events (i.e., based on tracking their mood, sleep, or activity). The most commonly used activities included Gratitude Journaling, Pleasant Activity Scheduling, and Engaging with Beauty. These activities were designed for users to record thoughts, schedule activities, and view photos, respectively, which may have facilitated app adoption through user acceptance and usage behavior (or habit formation).[39] [40] Interestingly, individuals who adopted Roadmap routinely established new patterns of use and integrated the app's activities into their day. However, there were some individuals who used the activities inconsistently, infrequently, or not at all. The reasons provided include timing of the onboarding process, stressful conditions of the HCT process, and being generally overwhelmed with caregiver burden; these individuals did not report any efforts to integrate the Roadmap app into routine practices. Thus, engagement, especially during overwhelming times in HCT care delivery, likely requires innovative strategies to promote longer-term uptake and engagement of the app.

Key lessons learned from these qualitative data that will help inform future iterations of the app include (1) personalization, (2) notifications, and (3) “coaching the app” through novel onboarding techniques. The majority of participants, irrespective of treatment arm, commented on the daily Mood push notification being one of the most used or liked feature of the app. They suggested that similar notifications or prompts should be developed for the resilience-building activities, but also not too many.[41] Recently, just-in-time adaptive interventions (JITAIs) have emerged as an mHealth intervention to provide support just-in-time based on real-time data collection.[42] JITAIs are designed to tailor the overall level of support based on current sleep, activity, and mood levels.[43] Individualized pushes are delivered based on a cognitive behavioral strategy with a motivational statement.[42] In efforts to achieve effective engagement,[44] continually incorporating user feedback in the iterative design and development process will lead to more useful tools that are leveraged in complex health care settings such as HCT.

Participants were recruited and enrolled to participate in this mHealth study during an unprecedented time in history of the coronavirus disease 2019 (COVID-19) pandemic,[45] where many standard-of-care clinical operations were modified, including clinical trials (like this one) where all procedures were conducted contactless.[46] Thus, efforts to support users in the onboarding and follow-up process of mHealth studies should be considered in this new pandemic-related era, such as “coaching the app,”[47] which integrates digital coaches along with the app.

Strengths of the study included rigorous data collection and analyses. Participants from both treatment and control arms were included. The transcriptions were coded independently from at least two research staff trained in qualitative research methods. The codebook was established through iterative coding and refinement of the codebook. The lessons learned were identified through numerous rounds of analysis of the coded data by the entire research team and compared with existing literature. Themes were emphasized in favor of findings relevant to the HCT population. To our knowledge, the Roadmap app and integration with wearable sensors is unique to this disease population, particularly in family caregivers during the early, acute phases of HCT care. This is in line with the growing trends in digital health (e.g., mHealth platforms, wearable sensors, home monitoring programs) that are enabling innovation in health care delivery.[48] [49] [50] [51]

Nonetheless, there are limitations of this study. Our findings were likely more generalizable to caregivers who were similar, mostly White, non-Hispanic, with at least some college education, and who own mobile devices and routinely use apps. Additionally, we recognize the inherent biases afforded by single-arm, single-center feedback. However, we are encouraged with the high proportion of caregivers who reported the app's ease of use and acceptability with no adverse harm.

Conclusion

In sum, the Roadmap platform has become so much more useful and usable because of the valuable feedback (e.g., semistructured qualitative interviews) received from the users, coupled with our desire to use that feedback to develop a feature-rich and user-friendly platform. While the larger study is ongoing, we will analyze data use logs and correlate them with longitudinal self-report assessments as well as ongoing qualitative data that are being collected. These efforts, including lessons learned herein, will help identify phenotypes of “engagers” versus “nonengagers,” establish pattern recognition of habit or behavior formation,[41] and classify mechanism(s) of action of Roadmap influencing outcomes.

Clinical Relevance Statement

Partnering with users throughout the life cycle of an mHealth app will ensure higher level of adoption, engagement, and usability. With more widespread use of technology globally, individuals are using technology to monitor and manage their health. The intention of our work was to incorporate the views and perspectives of family caregivers participating in the Roadmap mHealth Study. To date, our qualitative findings suggest that caregivers are reporting enhancement of positive emotions (i.e., resilience) through the app's activities while undergoing stressful HCT care.

Multiple Choice Questions

1. User-centered design in mobile health (mHealth) app development refers to:

   • A single user's product design that emerges as the most important feature for app development.

   • An iterative process of incorporating user feedback to define requirements and design.

   • The software engineer's design that is selected for product development.

   • Sales and customer loyalty about the software design's product.

   Correct Answer: The correct answer is option b: “user needs are considered throughout the design of a technology–from initial requirements gathering to end stages of technology development.”

2. An mHealth intervention design that can promote engagement by users:

   • Adapt the mHealth intervention to multiple users at a given time.

   • Focus on one feature of the mHealth intervention (i.e., one component).

   • Just-in-time support that adapts to the user.

   • Assist the user in selecting the optimal wearable sensor to adapt to their use.

   Correct Answer: The correct answer is option c: “The JITAI is an intervention design aiming to provide the right type/amount of support, at the right time, by adapting to an individual's changing internal and contextual state.”[42]

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