Brain injury is a leading cause of death and disability around the world. In the United States alone, more than 3.5 million individuals sustain an acquired brain injury every year and an estimated 5.3 million Americans live with a related disability that causes lifelong challenges and reduced health-related quality of life (HRQoL) [1]. This is because of the complicated and longitudinal nature of recovery spanning months to several years affecting individuals through the interplay of physiological, psychological, social, and cultural factors [2-4]. That is, recovery extends far beyond clinical recovery [5], including personal recovery—the journey to a state where one is functioning at one’s best despite the ongoing symptoms of illness [6]. For example, though an individual does not exhibit routinely examined clinical symptoms such as unconsciousness or unresponsiveness [7], they might still experience brain fog limiting their ability to comprehend any form of communication or physical or cognitive fatigue severely limiting their level of work/leisure activity. The health care system currently focuses on clinical recovery and pays less attention to personal recovery, leading to reduced quality of life for individuals with brain injury.

Personal recovery depends on several factors such as the severity and nature of injury, premorbid health and lifestyle, demographics, social support, personality, and awareness [8-10]. Impaired awareness and lack of insight observed in individuals with brain injury is one of the major factors that leads to poor patient outcomes [11-13]. A lack of awareness causes neurological, cognitive, and personality/behavior limitations that are classified into [14] (1) intellectual, inability to understand that a function is impaired; (2) emergent, inability to recognize a problem when it is happening; and (3) anticipatory, inability to anticipate that a problem will occur as a result of a deficit.

The primary focus of rehabilitation for brain injury is to improve emergent and anticipatory awareness through making sense of recovery, leading to anticipatory and recognition compensation—implementing compensatory strategies by anticipating or recognizing the occurrence of a problem caused by impairment [14].

Sensemaking is “a process, prompted by violated expectations, that involves attending to and bracketing cues in the environment, creating intersubjective meaning through cycles of interpretation and action, and thereby enacting a more ordered environment from which further cues can be drawn” [15,16] (Figure 1). It is enabled by the 4 key dimensions of personal data collection—data, context, interaction, and insight [17,18]. Reflection, a method of sensemaking, involves awareness of discord between expectation and reality, leading to examining feelings and knowledge resulting in a new perspective [19]. One of the cognitive and affective skills required to engage in reflection is self-awareness (examination of how the situation and the individual affect each other) [19]. Of particular importance to brain injury recovery are the notions of subjective/implicit and objective/explicit awareness. Subjective self-awareness is an implicit process drawing from on abstract knowledge, whereas objective self-awareness is a conscious process involving synthesis of new and existing knowledge leading to reflection [20-22].

An insight occurs intentionally or unintentionally through a process of cognition, understanding, and learning, followed by a change of views. Literature in personal informatics visualization lists 4 types of insights derived by individuals who collect and reflect on data about different aspects of their daily life [23]:

Personal recovery is measured by the extent of subjective well-being of a patient as overall well-being is the optimal goal of personal recovery [24]. The US Center for Disease Control and Prevention developed HRQoL for measuring well-being [25]. HRQoL provides valuable information on health status and treatment effects that could not be collected in any other way [26]. Moreover, self-rated health and higher self-awareness are long-term predictors of quality of life of brain injury patients [13,27].

Disease-specific scales have been developed to counter the methodological barriers to the adoption of HRQoL usage [28,29]. Truelle et al developed a traumatic brain injury–specific HRQoL—quality of life after brain injury (QoLIBRI)—with 37 items administered using six 5-point Likert scales: cognition, self, daily life and autonomy, social relationships, emotions and physical problems, and an overall scale [30]. These items help patients identify not only weaknesses but also their strengths and the impact on their own life situation.

Early research for brain injury recovery focused on inpatient rehabilitation through game design and medium-technology tools for occupational therapy [31], physical therapy [32], and cognitive rehabilitation [33,34]. Self-monitoring and management have also been studied in an inpatient rehabilitation setting [35] and at home via aids for memory impairment using reminders [36], activity organizers [37], and social robots to help patients with loneliness [38]. Activity monitoring and pain assessment were used to improve awareness of self and activities that could lead to reinjury [39,40].

Many accessible technologies have been designed to address living with the individual symptoms of life with brain injury. A limited amount of this work has been conducted directly with individuals with brain injury, identifying strategies for dealing with things such as impaired memory formation [41] or difficulty with scheduling and planning [36,42]. A wider body of literature explores broader domains such as cognitive impairment, which impact people living with many different disabilities and their care providers and families [43,44]. However, there has been little research in the health informatics or human-computer interaction communities on the role of interactive tools to not only measure but also support personal recovery. The holistic understanding of personal recovery, which is more than the combination of individual symptoms, requires tools that take into account its interconnected, nonlinear, and iterative nature in facilitating sensemaking.

We posted recruitment advertisements to online support groups for postacute brain injury survivors with a similar diagnosis and were contacted by 12 potential participants who were interested in the study. All members of the group underwent surgery for a growth in the same area of their brain.

Owing to the impacts of brain injury on cognitive functions, we conducted an initial screening phone call with each potential participant to explain the purpose of the research, answer any questions they had, and ensure their capacity to consent to the study. After explaining the study, we asked a series of questions to ensure that they understood the research procedure—for example, one of the questions asked: “What can you do if you decide after we start that you do not want to participate in the study?” An example of an acceptable answer would be “Tell you that I do not want to answer any more questions.” One participant was excluded as a result of not being able to answer the consent questions. In addition, 2 participants decided not to participate because of cognitive fatigue caused by taking the phone calls.

Data were collected through initial interviews and questionnaires, 2 weeks of structured HRQoL data collection, and final interviews and questionnaires. Figure 2 shows the timeline of data collection and number of participants in each activity.

All 9 qualified participants participated in an initial semistructured interview (protocol in Multimedia appendix 1) that lasted 60 to 75 min. This interview was based on recovery and rehabilitation measures and goals, tools for information tracking and synthesis, and clinical decision making [45].

Then, each participant answered questionnaires about (1) demographic information, (2) extent of self-advocacy, and (3) patient-perceived involvement in care (observing patient involvement) [46,47]. Participants were then asked to record HRQoL data reflecting on the previous week for 2 weeks, administered through Qualtrics. Furthermore, at the end of each week, the participants answered a questionnaire through which they reflected on the usefulness of the data they collected during the week. The tool was merely used as a data collection and participatory technology probe to study usefulness of the framework, and so, the participants could not observe trends with 3 weeks of data collection [48].

At the end of 2 weeks, they took a (1) final semistructured interview lasting 45 to 60 min (protocol in Multimedia appendix 2) and (2) a questionnaire for the researchers to gain an understanding of their graph literacy intended for a future study. The final interview discussed usefulness of QoLIBRI, reflection, and expectations from a data collection tool. Figure 2 shows the study design and number of participants who participated in each activity. Owing to scheduling and other health concerns, only 5 participants were able to take the final interview. We used a protocol that combined the initial and final interview for 1 participant because of availability. The details of activities done by each participant are listed in Table 1. The participants were paid US $20 each for interviews and US $20 for all the questionnaires. The Indiana University’s institutional review board approved this study.

Each interview was conducted over an audio call and was recorded. All the authors participated in a 6-phase essentialist/realist semantic thematic analysis to analyze the data from 14 interviews and 22 questionnaires [49]. We used both data-driven and theory-driven coding, identified themes using surface meanings of data, and used only participants’ experience and perspective for interpretation. To be faithful to the firsthand account of motivations and experience of individuals with brain injury, we present the significance of the patterns and their broader meanings and implications, mostly assuming a unidirectional relationship between meaning and language [50].

Data from participants P1 to P5 were collected between February and April 2017. We performed an initial analysis from May to July 2017, in which we learned that participants formulated their data collection and synthesis processes intuitively. To probe the intuitive nature of that process further, we revised the semistructured interview protocol and collected additional data from participants P6 to P9 from August to September 2017.

Informational practices of people with brain injury involve data collection; data synthesis; and obtaining, understanding, and applying insights to their treatment plans or lifestyles. Participants collected data through structured tools such as standard and customized spreadsheets, wearable devices, mobile apps, and calendar or daily log. As the frequency of symptoms decreased in postacute care, participants found the changes in overall progress more qualitative than quantitative in nature. So, they switched to unstructured tools such as journals, running notes on mobile devices, blogs, summaries from clinician appointments, patient portals, posts made on support groups, and inputs from caregivers.

Participants reported having insights about aspects of recovery such as symptoms; effect of medication, therapy, and lifestyle changes on symptoms; change in cognitive and physical abilities; changes in personality, identity, and social presence; and overall progress. They benefited from doing qualitative data collection alone; reflection through qualitative data collection improved self-awareness and thereby improved their understanding of their condition.

Although data collection helped participants summarize their progress better, they struggled with establishing a common language with health care providers. All participants highlighted a disparity in understanding of the impact of brain injury among different providers and the actual experience of a brain injury. Participants’ lack of a conceptual understanding made it challenging to know what to monitor in personal recovery and develop a template for collecting data. Owing to this, most of their challenges were centered around finding an effective tool, effort involved, and accuracy of data collection. In particular, we identified 2 key information needs for personal recovery from brain injury: education needs and awareness needs. On the basis of this, we proposed a potential design direction for personal recovery: structured qualitative data collection.

The participant pool consisted of 8 females and 1 male with a median age of 37.5 years. All our participants had more than high school education and identified as white.

Although they underwent surgeries 1 to 4.5 years ago, symptoms presurgery lasted between 2 and 30 years because of reasons such as not being diagnosed, providers not being able to correlate symptoms with diagnosis, and not being able to find surgeons who were willing to perform the surgery. Participants reported high self-advocacy (education, mean=1.28; assertiveness, mean=2.21; and nonadherence when there is a disagreement, mean=1.9) and perceived involvement in care.

Our participants identified 2 major needs they experienced during their recovery process: education and awareness needs.

Informational practices of people with brain injury involve (1) data collection and (2) data synthesis, arriving at insights, and understanding insights through sensemaking.

Although participants all engaged in tracking and reflection, they still faced significant challenges. Overall, 3 particular challenges emerged in analysis: (1) challenges in communicating their progress and setbacks with providers, (2) informational challenges deciding what to track and how to organize the data, and (3) emotional challenges.

The lack of conceptual understanding of recovery is a major barrier to reliable data collection and effective communication with health care providers. Research in chronic disease management shows that knowledge about disease prognosis is integral to disease management and greatly impacts patient outcomes [53,54]. Though knowledge exchange through peer support serves as an important component of patient education [51,55,56], formally addressing this begins with prioritizing health care processes and improving resources for patient education.

Our participants also highlighted the need for establishing a common understanding of and language for recovery. This could lead to similar patient and provider objectives from quality-of-life data, which is still a major barrier to integrating PGHD into clinical decision making [57,58]. We believe that this cannot be achieved without training health care providers to interpret PGHD and incorporate that into clinical processes and providing patients with tools that are intuitive and effective in their context [59]. Educating health care providers about the type of data and methods patients use for self-management might shift the focus from disease to illness, thereby providing a biopsychosocial perspective for clinical context and establishing a common language for health care providers and patients to communicate [60,61].

Participants in our study benefited from qualitative data collection as it implicitly invoked reflection, which in turn improved self-awareness and understanding of their condition:

However, this was effective and useful when coupled with a conceptual understanding of brain injury recovery. To address this, we suggest using qualitative data collection in combination with the quality-of-life framework to enable reflection about personal recovery. This provides a template to follow progress while being flexible to customize for changing needs through recovery (eg, additional tracking for quality of sleep). Developing tools that allow structured qualitative data collection could be useful not just for brain injury but for any illness that requires self-management and lifestyle changes based on inferences from sensemaking [21,62,63]. Our current and future work involves studying how to design technology-agnostic structured qualitative data collection tools:

Participants managed their illness and made decisions about activities of daily living and IADLs based on their biopsychosocial awareness [61]. In spite of it being challenging, they reported sensemaking through reflection as a continual, iterative, abstract, and subconscious process in illness management. In agreement with the literature, they engaged in a nonlinear process consisting of implicit self-awareness, description (recognition, recollection, and providing a comprehensive account of the event), critical analysis (“examining the components of a situation, identifying existing knowledge, challenging assumptions, and exploring alternatives”), synthesis (integration of new and existing knowledge to solve problems and predict likely consequences of actions), and evaluation (making judgements about the value of something) [19]. When used intuitively and iteratively, participants did not find the need to engage in every phase and could make a mental shift to analysis and synthesis. Owing to it becoming a second nature, they did not perceive insights gained through such a process as aha moments.

Conversely, they reported cognitive load from engaging in explicit self-awareness because of the need to consume external and detailed information. Moreover, similar to individuals who self-manage other chronic illnesses [64,65], our participants agreed that a lack of tools that enable sensemaking of multiple types of data increased the burden of having to consolidate and interpret data from different sources. Yet, the boundaries between implicit and explicit self-awareness were blurred (P3, final interview: “Something I’ve always known”). This could be because of 3 reasons:

Participants’ insights were complicated and could be characterized as more than one type. In a few instances when the insight was too messy and abstract, the current framework was inadequate to classify it. Moreover, insights also changed based on the frame of reference. For instance, 1 participant changed her frame from reflective to social to gain a different insight:

This shows how the biological, psychological, and social aspects of an individual’s life are interconnected and interleaved with the overall wellness and so designing tools for sensemaking with this perspective would improve usability and integration into patient context [60,66].

Communicating current levels of progress with stakeholders such as informal caregivers, family and friends, workplace, and health care providers is an integral component of illness self-management. Although informal caregivers are responsible for communication during clinical recovery, brain injury patients handle and make sense of data in postacute recovery that usually involves transition to self-management. This requires the patients to articulate their interpretation based on the stakeholder they are communicating with [60].

Informal caregivers, family, and friends need to be informed about current challenges, assistance required, and accommodations they need to make to ease rehabilitation into personal life. Patients need to evaluate their abilities and impairment and communicate this with the workplace for accommodations. Conversely, health care providers need to be informed about the current symptoms and services required by the patient to attain the desired quality of life. Thus, the same interpretation needs to be articulated as different constructs based on the scenario.

Designing tools for networks of illness self-management is essential to the integration of such tools into patient’s lives [67]. Leveraging constructs such as quality of life is helpful for (1) translation of PGHD into clinical variables, (2) providing a common language between patients and providers, and (3) shared decision making [60,68]. Improving communication could also reduce the general mistrust in the validity of PGHD and encourage incorporating it into clinical processes. Subjective measures shed light on the biopsychosocial nature of diseases and enable health care providers to empathize and provide patient-centered care.

In this paper, we presented the perspective of postacute brain injury patients recruited from an online support group for a specific type of brain injury.

Although the homogeneity of the condition presented common challenges, homogeneity of demographics such as socioeconomic status, race, and gender is a limitation of the study. As our participants had a higher education and socioeconomic status than the national average, they might experience lower resource scarcity and higher environmental stability, and thus have more opportunity for focusing on future needs, critical thinking, and self-reflection [69]. In addition, as participants were recruited from a text-based online support group, they may have fewer symptoms relating to communicative or social ability than other people with brain injury. Therefore, this might not be the most representative sample of individuals with brain injury. Yet, their challenges such as gaining biopsychosocial perspective, emotional burden, and lack of knowledge about disease are very similar to individuals with chronic conditions and multiple comorbidities [70,71], so we believe the findings of this study might be applicable to self-management of chronic illnesses in general.

Our participants were recruited remotely to ensure flexibility in participation. In spite of that, we still witnessed a high participant dropout rate stemming from health challenges and other complications of life after brain injury. General disbelief in researchers and fear of changing social dynamics in the group also creates a reluctance to participate in health research. The perspective of health care providers is out of the scope of this study.

Self-tracking and management technologies have potential to help individuals experiencing personal recovery to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies designed for a general audience may be unsuited for measuring the interconnected, nonlinear nature of personal recovery from brain injury. Moreover, little is known about the potential opportunities and barriers for information systems to support personal recovery from brain injury. Furthermore, an understanding of this also has implications for the study of self-management of other chronic illnesses.

We conducted a qualitative study for understanding the current informational practices and sensemaking processes used by postacute brain injury patients during personal recovery and the relevance of the QoLIBRI framework in patient context. Our participants highlighted the lack of conceptual understanding of recovery and lack of tools for making sense of their health data. On the basis of this, we discussed improving the validity of PGHD. Our research has implications for policy, process, and technology design involving all the stakeholders of health care to democratize clinical decision making.