Identifying user-centered content,design,and features for mobile health apps to support long-term assessment,behavioral intervention,and transitions of care in neurological rehabilitation: An exploratory study

Abstract

Introduction

The use of mobile health technology has the potential to increase healthcare accessibility, promote self-management, provide education materials, and support self-monitoring of biometrics. This may be of particular benefit to those living in the community with chronic neurological conditions.

The purpose of this research was to characterize perspectives of individuals with brain injury or stroke, their care partners, and neuro-rehabilitation clinicians to inform the design of mobile health app-based interventions that address the need for ongoing community-based health-related professional support.

Methods

Individuals with stroke or traumatic brain injury, their care partners, and clinicians were recruited from a large university hospital with a specialized neuro-rehabilitation program. Data were collected via semi-structured focus groups and were examined using descriptive statistics and content analysis.

Results

Five consistent themes emerged: (a) all-in-one app with customized features; (b) communication with healthcare providers; (c) cognitive strategies; (d) app accessibility; and (e) user education. The clinician focus group reiterated these consumer focus group themes, with one additional theme: (f) logistics of clinician time and effort to provide effective app-based services to patients.

Conclusions

Results have directly informed the ongoing development of a community-based mobile health app intervention, and may also inform the content and design of future mHealth technological development in this population.

Keywords

Mobile health stroke traumatic brain injury

Introduction

Worldwide, approximately 69 million individuals sustain a traumatic brain injury (TBI) each year (Dewan et al., 2019), and 15 million experience a new or recurrent stroke (World Stroke Organization, 2019). Acquired brain injury is a leading cause of chronic disability, and returning to the community after brain injury is associated with a myriad of emotional, social, and health-related challenges that are intensified by abrupt lifestyle changes and new roles and responsibilities for both brain injury survivors and their care partners (Gan et al., 2010; Grant et al., 2004; Powell et al., 2017; Stocchetti and Zanier, 2016; Williams et al., 2014). However, access to community-based rehabilitation and mental health services for individuals with these chronic conditions is often limited (Centers for Disease Control, 2015; Graven et al., 2011).

The use of mobile health (mHealth) technology, specifically mobile assessment and intervention, has the potential to significantly increase healthcare accessibility and also promote self-management, provide evidence-based education materials, and offer a platform that supports self-monitoring of biometrics like heart rate and blood pressure. MHealth technology is commonly criticized for serving only those with mobile phone access and/or operator knowledge; however, smartphone technology is quickly becoming ubiquitous. In fact, mobile phone network penetration in the majority of low- to middle-income countries exceeds primary infrastructure development such as paved roads and electricity (World Health Organization, 2011).

Less than 1% of the 165,000 mHealth smartphone applications (apps) available for download are rooted in evidence-based knowledge (Anthes, 2016; Firth et al., 2016; Free et al., 2013). The majority of mobile apps related to stroke and TBI are not interactive and provide unsubstantiated information to consumers (Dubey et al., 2014; Free et al., 2013; Wang et al., 2017). A 2019 systematic review of mobile health applications in rehabilitation (Nussbaum et al., 2019) reviewed 14 studies of stroke-related apps and seven studies of TBI-related apps. Only two of those studies were randomized controlled trials (Nussbaum et al., 2019). Though the majority of the studies were small, seven of the studies reported significant findings, concluding that: (a) stroke- and TBI-related apps can, in some cases, effectively replace paper-based screening and assessment tools (Choi et al., 2015); (b) some stroke- and TBI-related education apps designed with a client-focused approach demonstrate high usability; and (c) some apps that provide patient interventions can significantly improve functional outcomes and self-management skills (De Joode et al., 2013; Paul et al., 2016; Pavliscsak et al., 2016). A quick review published in 2019 on mHealth technology use after TBI yielded similar results, concluding that mHealth apps can provide cognitive strategy techniques for monitoring and reducing symptoms, and effectively augment education and self-management, but that research was still predominantly limited to developmental and small pilot studies (Juengst et al., 2019a).

Evidence suggests that technology adoption relies upon the app users’ perceived value of use, yet the vast majority of current mHealth apps are developed for a population and not with the population, resulting in high rates of technology abandonment (Matthew-Maich et al., 2016). Therefore, we propose a multi-phase, user-centered study design (Lyon and Koerner, 2016; Mohr et al., 2018) to develop an mHealth app intervention for community-based individuals with acquired brain injuries (stroke and TBI) and their care partners. The first phase of this study, reported here, systematically examines mobile phone and app use from the perspective of individuals with stroke or TBI, their care partners, and rehabilitation therapists who specialize in neurological rehabilitation. This was an exploratory study, and although the results are not exhaustive, they have informed the development of a community-based mHealth intervention study currently underway. The goal of this project was to conduct the first phase of a user-centered study designed to broadly identify app content and features that are meaningful to individuals with stroke and TBI and their caregivers to serve as the foundation for the development of an app (or apps) to support long-term management of these conditions. The long-term goal is to develop an app that meets the needs of patients with stroke and TBI and their caregivers that could eventually be integrated into electronic medical record systems at a facility level with potential to expand to other medical systems.

Methods

To identify meaningful content and features to inform the development of an mHealth app designed to improve community-based function in individuals with acquired brain injury, we conducted a series of focus groups following a widely accepted systematic process for data collection, data handling, and data analysis (Krueger and Casey, 2014). The Standards for Reporting Qualitative Research (SRQR) (O’Brien et al., 2003) was used to ensure clear and complete reporting of this qualitative study. Regarding reflexivity, the researchers who conducted the focus groups come from different clinical backgrounds (occupational therapy, rehabilitation counseling) with expertise in neuro-rehabilitation. A clinical psychology PhD student took detailed notes and contributed to thematic coding. The diversity of expertise and perspectives and predetermined structure of the focus groups (see online appendix for discussion questions/topics) helped minimize the effects of a priori bias or tangential leading from any single investigator. Similarly, no single participant’s viewpoint was given preference over another, and researchers ensured that all focus group members contributed to the discussion. Focus groups were conducted in an informal “round table” manner, with food socializing and dinner preceding focus group discussion. Therapists in the clinician focus group were known to investigators, which helped create an open atmosphere of collegiality and frankness; researchers could in no way affect any therapist participant’s career (for example they did not work in the same department).

Focus groups

We conducted two focus groups of individuals who had experienced acquired brain injuries and their care partners. The aim of these groups was to gain an understanding of the participants’ experience with mobile phone use before and after brain injury and elicit their recommendations regarding app content and design. A third focus group was conducted to gather input from neuro-rehabilitation therapists regarding app content, design, and facilitators of and barriers to mHealth intervention delivery from a clinical perspective. Focus groups were audio recorded and transcribed for analysis. We conducted focus groups based on established methods (Krueger and Casey, 2014). Focus groups lasted between 60 and 90 minutes and were conducted in English by the principal investigators of the study (CO, SJ). The investigators who conducted the focus groups are both clinical researchers; one is an occupational therapist and the other is a rehabilitation counselor. The investigators did not have established relationships with any of the participants in the consumer focus groups. All participants signed a written informed consent form. They were not paid but were incentivized with a light dinner and beverages.

Recruitment

Participants for the two consumer focus groups were recruited from University of Texas Southwestern Medical Center’s stroke support group, TBI support group, and physical medicine and rehabilitation outpatient clinic. Participants were included if they were ≥ 18 years old and either had a history of acquired brain injury or were a care partner of someone with acquired brain injury. Participants were excluded if they were not fluent in English or were unable to actively participate in a focus group setting. Participants for the neuro-rehabilitation therapist focus group were recruited from University of Texas Southwestern Medical Center’s inpatient rehabilitation unit, outpatient clinic, and School of Health Professions faculty. They were included if they were willing to participate and had experience treating patients with acquired brain injury. All procedures were approved by the University of Texas Southwestern Medical Center’s Institutional Review Board, and all participants provided consent.

Data collection

Systematic qualitative data collection methods (Bradley et al., 2007) were employed to solicit input and feedback from focus group participants. Focus group questions were developed, structured, and honed in collaboration with experts in patient-centered outcomes research (PCOR) and a community advisory panel (CAP) at University of Texas Southwestern Medical Center and Parkland Hospital (see online appendix: phase I focus group questions). These groups were made up of former patients, patient advocates, and care partners of patients within the Dallas County Hospital system. Consumer focus groups included guided discussion of: (a) current use of apps to manage health, including facilitators/strengths and barriers/weakness to using these apps; (b) use of actigraphy monitors (for example Fitbit) and other mHealth devices and apps used for physical activity engagement; (c) preferences for use of mobile devices versus paper and pencil or speaking over the telephone; (d) app design/features including reminders, prompts, time of use, frequency of use, etc.; (e) app content: audio/video, text messages, supportive statements, educational materials, etc., and (f) care partner and care recipient app access (shared versus separate log-in).

The neuro-rehabilitation therapist focus group participated in guided discussion of: (a) use of apps to assist patients in current clinical practice, including facilitators/strengths and barriers/weakness to using these apps; (b) use of actigraphy monitors (for example Fitbit) and other mHealth devices and apps used to encourage physical activity in clinical practice; (c) appropriate app design/features such as reminders, prompts, etc. within an acquired brain injury population; (d) appropriate app content: audio/video, text messages, supportive statements, educational materials, etc. within an acquired brain injury population; and (e) anticipated barriers/facilitators to patient app use and web-based patient–therapist engagement.

Data analysis

Thematic analysis, a six-step process for identifying, analyzing, organizing, describing, and reporting themes (Nowell et al., 2017), was used to analyze the data. Thematic analysis is a reliable method for exploring study participants’ perspectives, comparing and contrasting data, and revealing unanticipated insight (Braun and Clarke, 2006; Nowell et al., 2017). All focus groups were audio recorded and field notes were documented during the sessions. All authors met immediately following each focus group to review and discuss field notes, during which time initial themes were identified. The audio files were then transcribed verbatim and two investigators, who attended the focus groups and had intimate knowledge of the group setting as well as the tone and attitude of attendees, independently performed a manual content analysis of transcripts and field notes, identifying and color-coding concepts. The coded concepts were then merged and categorized by theme. Matrices were used to organize the themes and identify emerging patterns of subthemes (relevant and frequently addressed topics related to each main theme) in an Excel spreadsheet (Krueger and Casey, 2014). To contribute to the internal validity of the study, investigator triangulation was used to decrease potential biases in gathering, coding, and reporting the data (Denzin, 2009; Mitchell, 1986; Thurmond, 2001): (a) two research team members identified and coded meaningful concepts; (b) team members met weekly to discuss and interpret findings; and (c) summaries of findings were created to review with study team members (Krueger and Casey, 2014).

Results

Participants

Two consumer focus groups were conducted in October 2017 and consisted of n = 5 individuals with a history of acquired brain injury (ABI) (TBI, and stroke) and n = 3 care partners. Participants with ABI ranged in age from 52–66 years and n = 2 (40%) were female. Care partner participants ranged in age from 52–70 years and n = 2 (67%) were female. All consumer participants owned and used a smartphone daily, both before and after injury. A third focus group, also conducted in October 2017, consisted of n = 8 therapists with expertise in neuro-rehabilitation representing occupational therapy, physical therapy, speech therapy, and neuropsychology, practicing in both inpatient and outpatient settings. All were female.

Themes

There were five consistent themes identified in the consumer focus groups: (a) an all-in-one app with customized features; (b) communication with healthcare providers; (c) cognitive strategies; (d) app accessibility; and (e) education about stroke or TBI. The therapist focus group themes confirmed the themes of the consumer focus groups, with one additional theme: (f) logistics of therapist time and effort to provide effective app-based services to patients.

Focus group feedback from individuals with stroke and TBI and their caregivers:

All-in-one app with customized features

Individuals with acquired brain injury and their care partners felt that navigating within and between mobile apps to accomplish a single task was burdensome and sometimes impossible, especially in the first few weeks after injury. Participants suggested an all-in-one mHealth app that would reduce the need to access multiple apps to accomplish related tasks. One care partner noted: “if it was all in one place that would be great; talk to doctors, make appointments, lists of medications, calendar.” Another care partner indicated that it would be helpful if an app “interacted with existing apps, like my pedometer [data could] just feed into it [the app]. And…if I gave my permission to have my [patient portal health system] account feed into an app, it would be great.”

Overall, participants agreed that an ideal all-in-one mHealth app would contain a calendar and ability to schedule appointments, a resource library with evidence-based information that was easy to understand, the ability to engage in two-way communication with a healthcare provider, memory aids (reminders/notifications), and the ability to track health-related factors (for example blood pressure, sleep patterns, medications, physical activity, mood/behavior, recurring symptoms, home exercise progress).

Communication with healthcare providers

Prompting users to record health data to improve communication with providers

There was consensus across the focus group participants that the ability to communicate with a healthcare provider through mHealth would benefit both those with acquired brain injury and their care partners, particularly during the transition from hospital to community. Many reported that they would appreciate a record of communication with healthcare providers, for example messages that they could scroll through when they forgot what information was exchanged or wanted to review a conversation. One participant talked about how an app would be more useful than recording the health-related information requested by her physician on paper:

I was trying to talk her [physician] into getting me off some of the medications; I thought my blood pressure was fine. I was taking my blood pressure every day, three times a day, and writing it down on a little piece of paper and trying to remember to bring that piece of paper when I went to see her [physician].

She liked the idea of an app that would organize her health information and routinely remind her to record it, so that she could easily share it with her healthcare provider.

Keeping a record of communication

Other participants stated that it would be helpful to have communication exchanged through an app be part of their medical record. Specifically, one noted:

I never use my voicemail. Like, I check it, and it’s gone, and then they have to call you again…if you use the website or app, there is a record back and forth, but also it’s a reminder on both sides that, oh, there’s something to do. Whereas a phone call or a voicemail…you listen to it and weeks later you get your next voicemail and you’re like, oh, I forgot about that voicemail.

An infrastructure to support two-way communication

All participants agreed that two-way communication exchange with healthcare providers within an mHealth app would be of great benefit to recovery and rehabilitation after injury, but only if a healthcare provider were available to assist and answer questions in a timely manner. One individual with stroke noted that he had sent a message to his doctor through an electronic patient portal to request an increase in his medication dose, after which:

…he [physician] wrote me back in an email that I had to log-in [to the patient portal] to get to, and his answer was short and sweet – “let’s wait to talk for your next appointment” – he could’ve easily sent that in text. That would’ve been great.

Participants expressed frustration with unanswered emails and phone calls, and felt it was imperative that a health system that offers an mHealth app with two-way communication have an infrastructure in place to support timely responses to questions and concerns by a qualified healthcare provider.

Sharing health data with healthcare providers

There was consensus among participants that the ability to track and share data, such as blood pressure, sleep patterns, mood, etc., via smartphone technology would reduce recall bias and thus improve the quality of communication between individuals with ABI, their caregivers, and their healthcare providers. It can be difficult to recall several months’ worth of health data at an annual or biannual appointment with a physician. Tracking health information daily or weekly via an app and then having the app communicate that information to the physician or other healthcare provider may improve the quality and accuracy of patient–provider communication.

I think we, as patients, want good communication with our doctors. I’m paying them a lot of money. I want them to know how I’m doing. When I’m not sleeping, when I have restless legs, when I’m in pain, whatever is going on with me.

Communication strategy

One participant with expressive aphasia conveyed his concern about communicating with healthcare providers and people in general. He said:

Everyone knows I’m not going to talk and [my daughter] does it for me, and that’s what I do. It’s really hard for me, especially if I say something and get into trouble. I say something [wrong and then say], “that’s not what I wanted to say.”

When asked about a customized app that would allow him to program frequently used responses that were typed, texted, or spoken with the tap of a button, he responded: “I can do that on my computer. An app with that would be helpful!”

Cognitive strategies

Calendars and schedules

Overall, participants agreed that cognitive strategies built into an app would improve their ability to organize and perform daily tasks. Participants agreed that calendars and interactive schedule creators could assist with organizing daily tasks. One participant discussed buying a paper calendar, but then not using it.

I always used to keep a calendar; I was so diligent [prior to injury]. Now I always buy a calendar, and by February I’m not using it. Thinking, you know, that I’ll lose it or just, it’s not convenient to get it out of my backpack or something. And they’re [the doctor’s office] going to remind me [of the appointment] anyway, so I’m okay.

However, this participant later stated: “If my doctor didn’t remind me that I had an appointment on Monday, I would probably not always go.”

Notification systems

There was consensus regarding the value of a reminder/notification system that could be programmed to function as a memory aid.

I like alerts. It’s hard to get your life organized after you’ve had a brain injury, and I don’t have a caregiver. I don’t have somebody to prompt me, “Honey it's time to go.” I've got to get my life together.

A care partner of an adult with TBI suggested the use of a reminder/notification system that both the individual with TBI and the care partner could access:

You could put it [task] on a list with a date to remind [individual with TBI] to do this [task] this many times by [a certain date]…and either of you [individual with TBI or care partner] could add to it and then, it would just pop up and remind you.

Biofeedback through an app

Participants were asked to share their thoughts about the use of biofeedback for emotional regulation (for example the use of a watch or other sensor that could detect a change in heart rate variability indicating an abrupt change in mood). Participants agreed that an app feature that recognizes and responds to emotional dysregulation within the moment may increase the user’s ability to self-regulate when emotions are overwhelming. A care partner of a young man with TBI said:

I believe the, what you mentioned earlier about being able, through a watch or some kind of device, being able to sense your mood, your blood pressure, various things, and being able to give you hints. Our son, as many [of] you know, when he gets angry, it’s like a rocket going off. He’ll go from calm to exploding in point three seconds. If something that could instantly notify him and say, “hey, slow down, calm down, take a deep breath,” it would be very, very useful.

Tracking health information

Participants reported an interest in an app feature that would allow them to track and record items such as medication lists, questions for medical care providers, blood pressure readings, recurring symptoms, daily physical activity, sleep patterns, and mood. Participants agreed that seeing weekly or monthly trends in a graph format (for example daily activity, mood changes, blood pressure readings) would increase their awareness of long-term patterns of behavior and provide a more accurate account of these factors compared to simply recalling from memory. A participant with stroke reported:

There’s too much paper, with my drug lists on it, prescriptions, all kinds of stuff. So anything I can store in an app will be helpful.

I want [the doctor] to know how many hours a day I spent with my toes curled up and how many hours a day is spent wearing this silly looking thing [gestures to hand splint] [the therapist] asked me to wear. And I’m doing my exercises that [the therapist] asked me to do and I’m doing my home therapy program. I’d like to log that in so you can see it. It would make the time, face time, you have with the doctor more valuable.

Accessibility and privacy

App simplicity

Participants stressed the need for simplicity of app design. A participant with TBI said, “It seems like it’s very intuitive to use an app, but when you’re really brain injured, everything is a struggle, you’re still figuring out how to swallow.”

There was overall positive agreement when the facilitator asked about the idea of tailoring the app to the user. For example, the app may contain several access-controlled suites, allowing the app administrator (for example therapist) to adapt the app to the user’s needs and abilities by providing the user access only to appropriate suites.

App design for visual impairments

One participant suggested that considering visual impairment would be important for the design of the app. “You know, I’m colorblind, so I don’t even know if I can see details on apps.”

Participants agreed that font size, use of colors, use of pictures instead of words, and having an auditory component for those who are unable to read are all elements to consider when designing an app for this population.

Posting personal health information (PHI) in an app

Overall, all participants save for one reported that they would not be concerned about posting PHI as long as the app platform was Health Insurance Portability and Accountability Act (HIPAA) compliant. They also reported feeling comfortable with video exchange of living environment (for home modification/adaptation purposes) and home exercise performance.

I wouldn’t mind those things [PHI] being communicated. My own [primary care provider] was out recently…for 6 weeks and another doctor filled in for her practice. I love EHRs [Electronic Health Records], the whole concept of them, because he could see everything. He knew me before he walked in that door.

The one dissenting participant stated that he was not comfortable posting his PHI anywhere, including to an electronic medical record patient portal system. Participants stated that it was important for electronic PHI to be protected, but many reported difficulties remembering multiple passwords for multiple systems. Most agreed that fingerprint recognition would be sufficient to protect PHI and make accessing the app easier. One participant stated:

The problem with them [apps] is the logins and the passwords are too long. I know they’re protecting PHI to death, but if they can just make it easier to log into it, that would be great. In the emergency room when I had my stroke, I wanted them to call my kids. They kept asking me what my password was, I was like, I don’t know! I don’t know the password to my phone!

Access to PHI and other protected content

On the topic of who may have access to the app and its protected content, participants acknowledged that some users may require assistance to use the app. A participant with TBI stated that he did not mind if his wife had full access to the app. Another participant who was a parent and care partner of an adult child with TBI stated that his son would not want him to be able to access all of his private information. Facilitators asked about individual access to certain elements of the app. For example, care partners and the individual with the brain injury may have separate log-in codes to access the app suite that supports communication with a medical provider. This way, both users would have the option to communicate privately. Participants agreed that this feature may meet the needs of both the care partner and the individual with brain injury while maintaining the autonomy and privacy of both parties. When a wife and care partner of an individual with TBI was asked if she would prefer separate log-in access from her husband, she responded:

I think so, probably, because there may be some things that I don’t want him to know that I say about him…if my [husband] knows I’m talking to his doctor he gets furious, but sometimes I need to talk to him [doctor]. He’s [husband] out of control.

Education

Resource library

The majority of participants agreed that easy access to evidence-based information about brain injury through an app resource library would be helpful. Participants talked about their current use of online support groups and search engines to find answers to their health-related questions. They agreed that it can be difficult to determine if information is valid. A participant with stroke said:

My kids, my daughters, are smart girls and they, you know, have very busy professional lives and this was all overwhelming to them in the beginning, the piles of medicines, and the many, many doctors. “What kind of doctor is he again? What does he do? What do you go to that kind of doctor for? What is the purpose of this again?” Anything to help them…I mentioned the Facebook group that was trying to be educational. People can use a lot of education. People don’t even know what kind of strokes they’ve had, what areas of their brain were injured, what kind of impact that might have.

Triage/knowing when to seek help

Participants expressed the difficulty of getting to a doctor and indicated that it would be helpful to have an app assist them in identifying when it was important to seek help. “For me, going to doctors is a hassle. It’s like having to get on the phone to make an appointment. I have to log it in here, call an Uber. It’s exhausting.” Participants agreed that an app with a reliable mobile triage system supported by real-time communication with a healthcare provider may save time, money, and energy.

Focus group feedback from therapists (including logistics)

The therapists were asked to provide feedback about app content that would facilitate a continuum of care, improve patient–caregiver–therapist communication, and best support the rehabilitative needs of individuals with acquired brain injury. Overall, the therapist focus group and the ABI survivors/caregiver group resulted in the same themes. Therapists, like the patients and caregivers, stated that a two-way communication app could be a useful tool to provide the support needed for long-term maintenance of a chronic condition. They also recommended an all-in-one app that contained separate sections (for example calendar/appointments, medication management, home exercise programs, etc.), stating that it would be easier to train patients to use a single app rather than several different apps each serving a different purpose. Therapists’ suggestions regarding content were similar to those of the individuals with brain injury and their care partners. They suggested calendars, schedule creators, and reminders/notifications, all of which they, as therapists, could also access in order to track the user’s progress and guide them through the daily organization process as needed. They stated that the ability to track progress over time may potentially motivate patients and provide more accurate data regarding home exercise programs, physical activity, and behavior tracking. There was consensus that the ability to exchange pictures and videos regarding home exercise programs, adaptive equipment, and home modification recommendations would enrich health service delivery. One therapist stressed that mHealth should not replace in-person care but should be used to supplement and support the healthcare delivery process. The majority reported that they would be motivated to participate in an mHealth exchange with their patients and that they currently recommend apps to enhance rehabilitation. They stated that their knowledge about the apps they recommend was derived from the websites of their professional associations or, in one case, the department had developed a list of evidence-based apps to recommend for patients. Therapists, like the patients and caregivers, stressed the importance of building and maintaining a system-wide infrastructure that provides technical and professional support to healthcare providers who provide app-based healthcare services. The therapists envisioned a system integrated into the electronic medical record so that all providers could access the data. They suggested that the app allow providers to assign standardized assessments or screening tools to patients to monitor progress and alert providers when a patient may need an in-person visit to manage a problem (for example a psychosocial, physical, or behavioral issue) identified through the mobile assessment. To manage the burden of extra time and effort on the therapists’ part, they suggested a system with one care-coordinator who managed the data and alerted providers to problems identified through the mobile assessments.

Discussion

Individuals with brain injury and their caregivers and clinicians desire a wide range of mHealth app content and features in a single app to improve health tracking, communication, and decision-making. They expressed unanimous agreement that mHealth would be a beneficial adjunct to person-to-person healthcare services but could not completely replace the “human” component of current healthcare delivery. Therapists specifically noted that effectively implementing such mHealth apps into clinical practice would require infrastructural support beyond simple modifications to existing eHealth platforms (for example patient portals), including allocated staff and time, billing codes, and consumer training. Organizational readiness is key to the successful adoption of a system-wide mobile app platform. Therefore, the development of an app like the one described here will require an interdisciplinary team that includes patients, care partners, healthcare providers, technology experts, healthcare system representatives, and other affected stakeholders.

One example of a type of mHealth system that addresses the needs and preferences of consumers and therapists is iMHere2.0, a customizable, multi-feature self-management app that consists of five components: a client app, a caregiver app, a web-based clinical portal, a back-end server, and a two-way secure communications protocol (Setiawan et al., 2019). The system is an all-in-one app with 12 app modules that can be customized by the clinical provider from a web-based portal to meet the needs of the user. The system allows for two-way communication between the user and the care provider via an instant messaging system, so users do not have to learn multiple apps but rather they toggle between modules with the same general features and styles. Clinicians can also communicate personalized treatment plans via video and monitor adherence. It incorporates several cognitive strategy features mentioned in our focus groups, including calendars, scheduling systems, notification features like alarms and reminders, and a strategy for tracking health information like symptoms and questions for healthcare providers. Caregivers can also view the modules and provide reminders or encouragement. Lastly, existing mHealth systems like iMHere2.0 have already addressed issues of accessibility and privacy, desired by consumers and required by healthcare systems in which clinicians work (that is, a HIPAA-compliant system). A growing number of commercial mHealth app platforms do offer a safe, HIPAA-compliant interface where PHI is stored and accessed through a secure process.

A system like iMHere2.0 could be adapted to meet the specific needs of individuals with stroke or TBI and their caregivers and clinicians identified in our study. The participants in this study wanted to track and communicate data with their provider regarding blood pressure, sleep, physical activity, mood and behavior, and home exercise program progress. Therapists all expressed the potential benefit of these kinds of data for developing treatment plans and maximizing the time spent in face to face sessions. Incorporating wearables or other devices to track this information, rather than having the user input the data (for example type of exercise and duration performed) each day, could improve tracking of sleep patterns, blood pressure, and mood correlations with heartrate variability to best self-regulate behaviors. Wearable devices that provide real-time biofeedback and sync with the app may offer more reliable, real-time data that the user can apply in the moment and also use to track long-term patterns (Dobkin, 2016).

The results of this study also suggest that many individuals with brain injury are seeking a simple system. Simplification could include using pictures rather than words and an auditory component for those who cannot read. One focus group member with severe expressive aphasia reported a need for communication strategies. A customized module that provides frequently used phrases that are typed, texted, or spoken with the tap of a button may foster communication efficiency and effectiveness for those with expressive aphasia.

Individuals with brain injury identify primary educational needs in areas such as physical and emotional health maintenance; managing cognitive, communication, and fatigue issues; dealing with communication deficits; returning to work, driving, and sexual activity (Hafsteinsdóttir et al., 2011; Powell et al., 2017), while caregivers identify primary educational needs in the areas of physical and emotional care, physical activity, depression, dealing with emotional and behavioral problems, nutritional issues, and managing stress and relationships (Hafsteinsdóttir et al., 2011; Powell et al., 2017). These educational needs change over time as individuals with brain injury and their caregivers move through the phases of recovery and rehabilitation. As demonstrated in this study and others, caregivers have their own needs separate from those of the individual with brain injury (Juengst et al., 2019b). Therefore, including modules that specifically assess caregiver burden, target caregiver educational needs, and provide training in problem-solving and self-care techniques may support the caregiver’s long-term physical and mental health needs as well (Juengst et al., 2019b). A vast array of education modules for patients with stroke and TBI and their caregivers, with the ability to customize the education based on the user’s changing needs, could address individual educational needs over time and improve long-term health and quality of life.

All participants, including consumers and clinicians, agreed that mobile technology has the potential to augment the current state of healthcare and empower mHealth app users with brain injury to better self-manage daily life. Future adoption of an mHealth app, particularly one that is integrated into electronic medical records, will be contingent upon an interdisciplinary app development team that includes patient and care partner app users, healthcare provider app users, technology experts, healthcare system representatives, and other affected stakeholders.

Limitations

The focus groups of individuals with brain injury and their caregivers were composed of a small sample of individuals who regularly attend brain injury support group meetings. Therefore, these results may not represent a broader acquired brain injury population. Further, best practices for focus group research include conducting focus groups iteratively until saturation is achieved. However, this can be difficult in clinical populations like acquired brain injury, especially when cognitive and physical deficits preclude social participation in community activities like attending focus group sessions at a local hospital. Given our small sample size and number of focus groups, data saturation may not have been obtained; however, themes were consistent across both consumer focus groups and the clinician focus group. Solicitation of consumer feedback should be an iterative process, and we plan to conduct follow-up focus groups once the mHealth intervention is complete to elicit feedback regarding design and ease of use.

Key findings

MHealth app users desire: customizable features; two-way communication; built-in cognitive strategies; ease of accessibility; access to educational resources.

Therapists, individuals with brain injury, and care partners stressed the need for an infrastructure within the medical system to support app use.

What the study has added

The results of this study identify user-centered app content and features that have directly informed the ongoing development of a community-based mHealth app intervention.

Supplemental Material

sj-pdf-1-bjo-10.1177_0308022620954115 - Supplemental material for Identifying user-centered content, design, and features for mobile health apps to support long-term assessment, behavioral intervention, and transitions of care in neurological rehabilitation: An exploratory study

Supplemental material, sj-pdf-1-bjo-10.1177_0308022620954115 for Identifying user-centered content, design, and features for mobile health apps to support long-term assessment, behavioral intervention, and transitions of care in neurological rehabilitation: An exploratory study by Candice L Osborne, Shannon B Juengst and Emily E Smith in British Journal of Occupational Therapy

Footnotes

Contributorship

All authors listed contributed to the the study execution and manuscript development.

Research Ethics

Full ethics approval for this study was granted by the University of Texas Southwestern Medical Center IRB in 2017.

Consent

All participants signed a written informed consent form.

Declaration of conflicting of interest

The authors have no conflicts of interest to declare.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Candice L Osborne

Supplemental Material

Supplemental material for this article is available online.

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Supplementary Material

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