Abstract
The role of the social, physical, and organizational environments in shaping how patients and their caregivers perform work remains largely unexplored in human factors/ergonomics literature. This study recruited 19 dyads consisting of a parent and their child with type 1 diabetes to be interviewed individually and analyzed using a macroergonomic framework. Our findings aligned with the macroergonomic factors as presented in previous models, while highlighting the need to expand upon certain components to gain a more comprehensive representation of the patient work system as relevant to dyadic management. Examples of design efforts that should follow from these findings include expanding existing data sharing options to include information from the external environment and capitalizing on the capabilities of artificial intelligence as a decision support system. Future research should focus on longitudinally assessing patient work systems throughout transition periods in addition to more explicitly exploring the roles of social network members.
Keywords: patient work system, macroergonomics, care transitions, healthcare ergonomics, caregiving
Practitioner’s summary
Work performed by patients and their caregivers is shaped by the social, physical, and organizational contexts they are embedded within. This paper explored how adolescents with type 1 diabetes managed their health alongside their parents in the context of these macroergonomic factors. These findings have implications for research and design.
Introduction
Patient ergonomics is a growing sub-discipline of research in human factors and ergonomics (HFE) 1. This domain is an emerging focus in healthcare-oriented HFE which has traditionally concentrated on professionals in institutionalized settings.2 Only recently has HFE begun observing how patients perform work in home and community settings and designing systems to improve such performance. The concept of patient work, first introduced by Corbin and Strauss, describes actions taken by individuals and their informal caregivers to manage chronic illness and achieve goals related to health management.2,3 Patient ergonomics, then, applies traditional and adapted HFE theories, methods, and approaches to the domain of patient work in order “to study or improve patients’ and other nonprofessionals’ performance of effortful work activities in pursuit of health goals”.4
A recent mapping review of patient ergonomics underscores a need for scholarship related to multiple aspects of patient ergonomics including research on “children and informal (family) caregivers of children,” as well as “other care processes where patients’ actions or perspectives are important but maybe underappreciated, such as transitions of care”. 1,5,6 Moreover, there is a need to further articulate how multiple individuals may be involved in the performance of patient work and understand patient work outside of the solitary, which has been a primary focus of patient work research.7,8 This paper seeks to simultaneously address these multiple avenues of future research in the context of a case study of adolescents with type 1 diabetes (T1D) and their primary informal caregivers.
While patient work includes primary informal caregivers, the types of caregiving roles as dictated by workload and the degree of interaction with work performed by the patient themselves have not been well-defined. Informal caregivers are not paid medical professionals but perform important health-related work in a community setting, such as their home. Within patient ergonomics literature, two types of caregiving roles have been explored. An informal caregiving role can be conceptualized as supportive when an individual supports the work of a patient, the latter of whom takes primary responsibility for the performance of the patient’s work.9 In contrast, a role may be conceptualized as assumed when an individual takes primary responsibility for performing patient work on behalf of the patient, the latter of whom is minimally able to or fully unable to engage in patient work themselves often due to their age or nature of their health condition.10,11 A third, underexplored caregiving role can be distinguished when an individual and the patient work in ways that are tightly coupled or in tandem to manage an illness and the contextual factors in which they do so are entwined with their mutual relationship. Patient work performed in this way may be conceptualized as dyadic. One example of this form of patient work may be seen in adolescents with chronic health conditions that require a primary informal caregiver to take on substantial amounts of patient work early in life but that, in adulthood, will be performed predominately by the patient themselves. Dyadic forms of patient work present a particular opportunity to further our understanding of how informal primary caregivers play a role in adolescents’ self-management.
Dyadic management may be conceptualized as occurring during a transitory period from childhood to adulthood. In recent years, patient ergonomics has increasingly attended to the phenomenon of transitions and how such transitions may be supported through the application of HFE frameworks and approaches. 5,6,12–15 Although this topic has been studied extensively, transitions of care still tend to be suboptimal and are often periods of vulnerability associated with negative health outcomes.13 Existing patient ergonomics literature primarily emphasizes transitions that physically occur within or between healthcare delivery services, such as nursing handoffs or hospital discharges. 14,16–18 More recently, the notion of transitions in patient work has been conceptually expanded to include other periods of change, including life events, the onset of new health conditions, and the adoption of new devices, as well as empirically expanded to focus on transitions prompted by the prescribing or deprescribing of medications. 5 However, most work in this space focuses solely on adult patient experiences during a discrete change and does not explicate the challenges experienced by adolescents during the gradual transition of responsibility in a home or community setting. This latter type of transition may be considered a part of the patient journey, which attends to natural temporal transitions in a patient’s experience.13
Patient’s experiences throughout their health-management journey are shaped by the work system in which they are embedded. 9,19–25 The patient work system consists of six interacting elements of the person, the tasks they perform, the tools/technologies they use to support the performance of these tasks, and the social, organizational, and physical contexts in which the triad of the person(s), tasks, and tools/ technologies are embedded.21 These work system elements also interact to shape the experiences of caregivers.11,24,26 Much of our understanding of how work systems shape patient and caregiver work is drawn from cases in which the role of caregivers is supportive or assumed in nature. Our study seeks to build upon this previous work by explicitly exploring the ways in which the macroergonomic components of the patient work system, that is the social, organizational, and physical, influence the experience of dyadic management during the period of transition that is adolescence. In particular, we focus on the case of T1D, building upon our preliminary work that was specific to how the social context impeded or facilitated the recognition of glycemic events within a dyadic context.
In 2020, there were approximately 187,000 children and adolescents younger than age 20 years with T1D.27 Of those, 79% do not meet the standards for glycemic control set by the American Diabetes Association. 28 T1D is a metabolic disorder that causes dysregulation in plasma glucose levels. People with T1D monitor their blood glucose levels and take exogenous insulin to lower blood glucose levels at mealtimes to account for ingested carbohydrates. It is common for people with T1D to use insulin pumps and continuous glucose monitors (CGM). For these devices to either dose insulin (i.e., insulin pumps) or monitor glucose levels (i.e., CGM), they have to be attached to the person using them. Because of the awkward placement of these devices and the pain of using needles, adolescents with diabetes and some adults with diabetes also require help from informal caregivers for inserting the devices. The increased prevalence of the use of CGMs has led to another mode of low and high blood glucose recognition. These devices have a threshold for high and low blood glucose that is either preset or determined by the user and if measurements exceed these thresholds an alarm is triggered. Many caregivers can view their adolescent’s CGM readings on their cellphones, which also can alarm at the occurrence of low or high blood glucose. Clinicians often ask their patients to bring a record of their blood glucose levels to their visits for review and treatment adjustment. Many people with T1D or their caregivers manually log blood glucose levels in a paper logbook. Managing T1D takes considerable time for both adolescents with chronic illness and also their informal caregivers. 29
Failure to properly manage glycemia can result in long-term and acute complications. Prolonged high blood glucose, which is often a problem with adolescents with T1D transitioning to independence, can lead to vascular complications, including neuropathy, and retinopathy. 30 Severe low blood glucose can lead to loss of consciousness, seizure, and death. 31 Most parents who have adolescents with T1D are very concerned about their adolescent experiencing severe hypoglycemia 32, and recent work has shown how glycemic control significantly declines among individuals within the transitory period to adulthood. 33(p1),34
Studies in the diabetes literature have suggested that there are a range of actors that we conceptualize to be macroergonomic in nature that shape management behaviors and the experience of performing patient work to manage diabetes. 35–37 This work has predominantly explored social factors, with a few others demonstrating the importance of physical context and organizational policy. 38–41 However, most of these studies are in the diabetes literature and focus on only a handful of ergonomic factors at a time. Our goal is to systematically assess the full range of social, physical, and organizational factors from a human factors and ergonomics lens to inform the design of systems supportive of adolescents with T1D and their primary informal caregivers.
Materials and Methods
This study applied a qualitative descriptive approach, oriented toward the development of design recommendations.42–45 Data were collected for this study from May 2016 until November 2019 by the research team at the University of Virginia in partnership with a pediatric endocrinology clinic located in the mid-Atlantic region of the United States. Participants were provided with a $25 gift card to a national retail chain as compensation.
Compliance with ethical guidelines
This study was approved by the University of Virginia Institutional Review (SBS-IRB #2869). All adult participants provided consent. Consent for adolescent participation was obtained from the adolescent’s parent or guardian, and all adolescents provided assent as well.
Sample
We recruited 19 dyads consisting of one adolescent and one of their primary informal caregivers, usually a parent. Adolescents between the ages of 12–17 with a diagnosis of T1D and seeking care at the pediatric endocrinology clinic were eligible for study participation. Each adolescent identified a primary informal caregiver that plays a key role in their diabetes management. In every case, this was a parent.
Setting and Recruitment
All recruitment took place in the pediatric endocrinology clinic of a university medical center through packets distributed by clinicians and located in the clinic’s public spaces. Interviews were conducted over the phone and recorded. The packets contained both an information sheet and a brief survey covering two domains: T1D management and demographics. Specifically, T1D management questions asked about the adolescent’s use of assistive diabetes technology like a CGM, insulin pump, or mobile apps. Additionally, the adolescent was asked who assists them the most with T1D. Any caregiver who played a significant role in management was eligible for this study. Demographic information included the education level of the caregiver, race, and zip code. Based on the survey responses, we recruited interested individuals for study participation. Those selected for participation were invited via telephone or text (as indicated by their preference) to schedule a time for an interview. In each case, the number listed was contacted, which could either be the adolescent or an adult caregiver. If the person who answered the phone indicated an interest in the study, we scheduled an interview with that participant first and then followed up with the other member of the dyad. If the individual contacted was the adolescent, we obtained parental permission to schedule the interview.
Data Collection
All interviews were conducted over the phone and recorded. Each member of the dyad was interviewed individually. Interview guides can be found in the supplementary materials. These interviews lasted approximately one and a half hours and covered their daily activities related to T1D, low and high blood glucose, patterns of low and high blood glucose, exercise habits, and their use of technology. The audio of these interviews was recorded and stored securely on a device before being transferred to a secured/encrypted server and assigned a participant number. Audio files were then transcribed by a third-party transcription service and deidentified upon receipt of the research team.
Data Analysis
The interview transcripts were imported into a qualitative content analysis software, QSR NVivo Version 12, and collaboratively analyzed by several team members. To ensure a systematic and comprehensive analysis of the macroergonomic factors shaping dyadic management of T1D, we grounded our analysis in Holden et al.’s work system model, which elaborates macroergonomic subfactors influencing health management across the physical, social, and organizational contexts (please see the published paper for a full visual representation of the model and a breakdown of all included subfactors).21 Our analysis began with two team members (SL and LT) individually coding one dyad and then meeting together along with the senior author (RSV) to build consensus in the application of the existing didactic coding structure and to suggest additional codes that may need to be added to reflect themes in the data not captured by the didactic framework. This process was then repeated for a second dyad. Decisions made during these meetings were documented and used to guide subsequent analysis. The remaining dyads were split between the two team members (SL and LT) and analyzed. Whenever a question arose, the two researchers met to develop a consensus, and if questions remained, met with the senior author to determine how to proceed. Dyads were coded one at a time, beginning with the parent interview and subsequently moving to the adolescent interview. Textual samples were coded simultaneously, where multiple codes were applied as warranted to a single portion of text.46
Results
All quotes referenced throughout the results can be found in tables 2 through 4 located in the supplementary material following the notation (table, quote number). E.g., quote 5 from Table 3 is listed as (T3, Q5).
Participant characteristics
Detailed demographic characteristics are reported in Table 1. The majority of the adolescents recruited were female, of white, non-Hispanic descent, with a median age of 15. Additionally, most adolescents did not use an insulin pump, CGM, or diabetes smartphone apps, and had A1C levels that are considered elevated. Of the parents who disclosed their household income, 3 reported making <$30,000, 2 reported making between $30,000 and $74,999, and 6 reported making over $75,000. Four dyads did not complete demographic surveys, but based on data captured in the individual interviews, we additionally know that of these four, 75% were female and used both an insulin pump and a CGM. All parents interviewed were mothers.
Table 1.
Participant characteristics
| Participant characteristic | N (%) |
|---|---|
|
| |
| Gender | |
| Male | 7 (46.7) |
| Female | 8 (53.3) |
| Age | |
| 12–13 | 5 (33.3) |
| 14–15 | 4 (26.7) |
| 16–17 | 6 (40.0) |
| Race/ethnicity | |
| White, non-Hispanic | 12 (80.0) |
| White, Hispanic | 1 (6.7) |
| Black/African-American, non-Hispanic | 2 (13.3) |
| Family income | |
| <$30,000 | 3 (27.3) |
| $30,000 – $49,999 | 1 (9.1) |
| $50,000 – $74,999 | 1 (9.1) |
| $75,000 – $149,999 | 4 (36.4) |
| >$150,000 | 2 (18.2) |
| Use diabetes smart phone apps | |
| Yes | 6 (40.0) |
| No | 9 (60.0) |
| A1C | |
| In control (< 7.0) | 1 (6.7) |
| Elevated (7.0–10.4) | 9 (60.0) |
| Seriously elevated (> 10.5) | 2 (13.3) |
| Not reported | 3 (20.0) |
| Number of people in household | |
| 2 | 3 (20.0) |
| 3 | 6 (40.0) |
| 4 | 2 (13.3) |
| 5+ | 4 (26.7) |
| Use of continuous glucose monitor | |
| Yes | 5 (33.3) |
| No | 10 (66.7) |
| Use of insulin pump | |
| Yes | 5 (33.3) |
| No | 10 (66.7) |
Social context
All quotes can be found in Table 2 located in the supplementary materials.
Cultural influence
Parents and adolescents primarily spoke about cultural influence as it related to the impact of larger peer groups on diabetes management, and overall, adolescents were perceived to be more influenced by cultural pressure than their parents. Parents reported noticing changes in their adolescent’s behavior when in social groups but further reported that these changes may subsequently cause greater difficulty in noticing glycemic events (T2, Q1). For instance, multiple parents described how the typical indicators of glycemic events they had come to recognize, including moodiness, facial expressions, or physical responses (e.g., paleness, flushed cheeks) were harder to notice when their adolescents were in social settings (T2, Q2). Many participants also discussed how the activities of an adolescent’s friend group could motivate improved exercise behaviors (T2, Q3), however, one parent discussed how their adolescent was disincentivized to exercise due to the influence of their classmates (T2, Q4).
One parent discussed how their adolescent felt greater comfort in managing their diabetes at school because they were surrounded by others who also had diabetes (T2, Q5). Similarly, one parent described how although they faced difficulties given that all three of her children were diagnosed with T1D, the resulting intra-familial support and influence created an environment that successfully promoted diabetes management (T2, Q6). When in large social groups, however, many dyads discussed the difficulty of maintaining healthy choices (T2, Q7). They also discussed the cultural stigma of managing diabetes in public places (T2, Q8), and similarly, multiple adolescents described preferences for technology that were not visible, so as to avoid social stigma (T2, Q9).
Interpersonal influence
Most dyads discussed the adolescent experience of interpersonal influence in a positive light, as many noted how encouragement from family, doctors, friends, and coaches, among others, helped promote both health-management tasks (e.g., checking blood sugar levels) and healthy behaviors (e.g., improved diet and exercise). Parents were generally described as exerting a high level of influence on their adolescent’s health management behaviors through their daily monitoring of their adolescent’s health, although they noted that they may not always embrace their influence (T2, Q10). A few parents described how a doctor’s words may prove to be more influential than their own and often held heightened influence when it came to altering their adolescent’s health management routines (T2, Q11; Q12). In addition to trusted adults, friends, siblings, and other family members were described to influence behavior related to adolescents’ diabetes management (T2, Q13). Some participants mentioned the positive pressure to make better lifestyle choices, as imparted by friends who were also diagnosed with T1D (T2, Q14). Conversely, some participants noted how adolescents were negatively impacted by the influence of others. One parent discussed how other adolescent’s misunderstanding of diabetes could impact their adolescent (T2, Q15). Another parent discussed how their adolescent did not want to disclose their diabetes due to the potential strain on others (T2, Q16).
Social support and engagement
Support within the dyad
Support within dyads, mentioned by more than half of all participants, encompassed the mental, emotional, and physical support parents offered their adolescents with diabetes management tasks. The specific roles and tasks taken on by parents are further detailed in the Rules and Roles section. While many parents described encouraging their adolescent to become more independent (T2, Q17; T2, Q18), most reported performing management tasks to ease the stress on their child, as some adolescents expressed fear of managing their diabetes on their own (T2, Q19). Many adolescents noted trusting their parents with their diabetes management more than themselves as their parents were more knowledgeable about their condition (T2, Q20), and some expressed a fear of leaving their parents and having less support when living on their own (T2, Q21). Even when adolescents performed most of their diabetes management themselves, they often mentioned that assistance from a parent was especially helpful when managing events of hypoglycemia, as they were physically and cognitively limited in their abilities. Many adolescents also reported preferring the help of their parents over the help of other caregivers in their lives (T2, Q22).
Support outside of the dyad
Many participants discussed how strong support networks outside of their dyad aided the management of their or their adolescent’s diabetes. These sources of support included teachers, coaches, friends, friends’ parents, and extended family. Friends and boyfriends were described as playing key supportive roles, as adolescents expressed their appreciation for the emotional support (T2, Q23) and physical aid (T2, Q24) provided by these individuals to help manage their diabetes. Both parents and adolescents highlighted the value of receiving emotional support, specifically from peers who were also diagnosed with diabetes. Dyads frequently mentioned how having someone to relate to was emotionally helpful (T2, Q25), and parents discussed how their own friends with diabetes aided their understanding of their adolescent’s condition (T2, Q26). Many parents also mentioned the benefits of attending diabetes support groups and how they served as valuable social and emotional connections for both them and their adolescents (T2, Q27). Similar social support was received from online diabetes communities as well (T2, Q28).
In the familial context, the majority of mothers described how they operated as the primary manager of their adolescent’s diabetes and many expressed how they wished their child’s father would take greater responsibility for supporting diabetes care (T2, Q29), although this was not always the case (T2, Q30). They also discussed how the valuable help received from grandparents, siblings, and other family members, eased the workload on the parent (T2, Q31). Many parents described how siblings served as a general support structure (T2, Q32), while a family with multiple adolescents with diabetes discussed how the siblings provided each other with both material support and emotional support stemming from their shared experiences (T2, Q33; Q34).
The ability to contact and the support received by health care professionals also provided comfort for parents. The presence of a qualified, caring school nurse was described as reducing parents’ worries while their adolescents were at school (T2, Q35).
Physical context
All quotes can be found in Table 3 located in the supplementary materials.
Workspace
Many participants reported multiple locations in which dyads would manage their or their adolescent’s diabetes, including at school, in the home, and in various public settings. The majority of participants reported that the bulk of their or their adolescent’s diabetes care was limited to specific locations, most commonly being in the home or at school, where adolescents spent the majority of their day. At school, adolescents most often reported keeping their supplies in the nurse’s office, while at home, they often noted keeping their supplies in the kitchen, often having a designated drawer or container in these locations to store their resources (T3, Q1). Apart from these dedicated spaces, some equipment was often said to be left in other highly-frequented locations such as their bedroom or bathroom (T3, Q2). Other adolescents mentioned how certain necessary supplies (e.g., insulin, logbooks) were portable in nature and would be kept with them at all times (T3, Q3). Although these workspaces were intentionally situated in areas deemed convenient for the adolescent, some participants discussed how the adolescent may be required to change their location to complete diabetes management tasks (e.g., leaving the classroom to reach the nurse’s office, going downstairs to reach the kitchen), as their workspace was not always where other daily activities took place (T3, Q4).
The dynamic nature of diabetes necessitated that specific tasks (e.g., checking glucose levels and administering insulin) be performed across many locations and settings. Multiple participants described how their or their adolescent’s management could not be confined to a single location, as any space the adolescent occupied could become a diabetes management workspace if needed (T3, Q5). Many of these additional locations were settings in which adolescents would eat, as blood sugar checks and insulin corrections were required when consuming food (T3, Q6).
Distance, layout, and surface
Physical properties including distance and spatial layout were often described to shape an adolescent’s levels of physical activity. Many participants described how proximity to places of interest helped manage the adolescent’s health by necessitating increased activity, often being the sole reported form of exercise for adolescents (T3, Q7). Dyads also reported how their physical context was conducive to improving physical activity (T3, Q8), while in others, it may hinder activity levels (T3, Q9). Many parents and adolescents also mentioned how the availability and proximity of objects (e.g., exercise equipment, technology, etc.) in their own homes promoted exercise (T3, Q10). However, the use of readily available technology (e.g., gaming devices, phones, computers, televisions) was often mentioned to cause decreased levels of activity (T3, Q11).
Physical distance was also noted to impact how dyads engaged with their surroundings. Distance between parents and their adolescents was described to influence how health information was communicated within dyads (T3, Q12), how they utilized diabetes management technology (T3, Q13), and the level and timing of parental engagement with diabetes management tasks performed (T3, Q14). Outside of the dyad, long distances between dyads and their healthcare facilities were often described in a negative fashion (T3, Q15), and one parent mentioned how a health incident in a remote location negatively impacted their adolescent’s health care (T3, Q16). Distance from management equipment within the home was also negatively perceived, as the distance between an adolescent’s daily activities and their diabetes management equipment may cause frustration and hinder the performance of diabetes management tasks (T3, Q17).
Weather and environment
Multiple participants noted seasonal differences in adolescent’s activity levels. Some of this variation was due to the timing of different sports seasons or household activities (e.g., yard work or swimming in summer; snow shoveling or snowboarding in winter). Generally, winter months curbed exercise habits while physical activity levels increased during the summer months (T3, Q18). Multiple participants similarly reported being more sedentary on snow days, but for others, summer months were likely to cause decreased activity (T3, Q19). Some participants also mentioned unfavorable weather conditions negatively impacting their diabetes management methods, such as preventing them from taking a walk when experiencing hypoglycemic events (T3, Q20). Weather-related fluctuations in glycemic events were identified as an additional stressor on both parents and adolescents and often impacted adolescent’s exercise levels (T3, Q21; T3, Q22).
Organizational context
All quotes can be found in Table 4 located in the supplementary materials.
Routines
Diabetes management routines were generally established to either prevent glycemic events from occurring or to respond to glycemic events once they occurred. Participants frequently reported having structured days with highly consistent routines, although the summer months were often less structured due to the break from school (T4, Q1). The majority of the dyads’ general routines to monitor and prevent out-of-range blood glucose levels consisted of attending school and sometimes extracurricular activities, checking blood sugar levels at specified times (e.g., upon waking, before sleeping, before and after all meals), and parents checking their adolescent’s blood sugar during the night, as described by one parent (T4, Q2). If glycemic events were to occur, many dyads described having a routinized plan in place for specific scenarios (T4, Q3). Depending on the situation, this may include performing additional blood sugar checks, consuming more food, injecting insulin, or seeking assistance from outside resources (T4, Q4). Consultations with healthcare professionals were also generally noted to be a core aspect of dyad’s routines for diabetes management. Most participants cited attending a regular appointment every three months, but also discussed how contacting their doctors was often a component of their planned response to unexpected glycemic events (T4, Q5). However, dyads noted that health care professionals were often contacted only after discussions were had between parents and their adolescents (T4, Q6).
Routine-building was often said to be encouraged by health care professionals (T4, Q7), and some adolescents explicitly mentioned how consistent routines aided their diabetes management (T4, Q8). Participant’s management routines were often described to be emergent and dynamic as dyads became more familiar with their or their adolescent’s health patterns over time (T4, Q9). Conversely, factors including less-regular activities and circumstances (e.g., church, work, social activities, weather) (T4, Q10) and resulting changes to the physical (T4, Q11) and technological contexts (T4, Q12) were said to both disrupt and require changes to the routinized structure of diabetes management.
Communication
Person to person
Adolescents reported communicating about their diabetes with their parents more often than with any other individual. Parents were often the initiators of communication and reported speaking with their adolescents about diabetes several times a day, primarily through routine check-ins with their adolescent (e.g., after school, before meals, before bed) to monitor their blood sugar levels and to determine what actions had been taken throughout the day. The communication of this information was often said to be facilitated by their adolescent’s own tracking methods through a logbook or technology, such as a continuous glucose monitor or nutrition tracking applications on their smartphone (T4, Q13).
From an adolescent perspective, some adolescents relied heavily on communication with their parents to manage their diabetes throughout the day (T4, Q14), while others reported feeling responsible enough to care for their own diabetes without constant communication. Some were described to exhibit a general aversion to communicating for a range of reasons including general inattention to their diabetes (T4, Q15), tension with their parents (T4, Q16), and concern about burdening others (T4, Q17). In these cases, parents would rely on other sources, such as individuals or technology, to obtain information about their adolescent’s health (T4, Q18; Q19).
Despite their typical communication habits, a primary reason cited for most adolescents initiating communication was experiencing significant glycemic events, in which case they would require assistance and would turn to their parents for help (T4, Q20). Both parents and adolescents noted that adolescents were more prone to communicate hypoglycemic events in comparison to hyperglycemic events due to their significantly altered physical state, and would disclose information about these events to anyone in their immediate vicinity, including friends, teachers, or coaches, among others (T4, Q21). However, parents also noted that severe low blood sugar events may hinder their adolescent’s abilities to communicate (T4, Q22).
Adolescent to parent communication was further reported to depend on the context the adolescent was embedded. When not in the physical presence of their adolescent, parents would often communicate their adolescent’s situation to other adults who may be in close physical proximity to or in caretaker positions of their adolescent in order to ensure maximal safety (T4, Q23) and preempt what may be perceived as atypical behaviors for both the parent and the adolescent (T4, Q24). In school settings, parents often disclosed that the school nurses were the primary facilitators of communication within dyads (T4, Q25). Despite this school-sanctioned pathway for communication, some parents established a parallel communication pathway directly with their adolescents (T4, Q26).
Much of the communication between parents and adolescents, specifically about glycemic patterns, resulted in making changes to their diabetes management plans (e.g., correcting insulin) (T4, Q27). These changes were often facilitated by communication with healthcare professionals (T4, Q28).
Technology to person
Information provided by technological devices played a large role in facilitating communication within dyads. The majority of dyads reported using CGMs with sharing features, in which parents receive real-time updates of their adolescent’s blood sugar levels to an app on their phone. In some cases, this technology would prompt dyadic communication when blood glucose levels fell outside of their typical range (T4, Q29), but in cases when blood glucose levels appeared in the normal range, it negated the need for parent to adolescent communication (T4, Q30). In yet other cases, this exchange of information to parents proved to be life-saving for their child when their adolescent was incapable of communicating due to a low blood sugar event (T4, Q31). However, some parents discussed concerns about the reliability of this technology, thus resulting in redundant information being shared from both the adolescent and the CGM to the parent (T4, Q32). Some parents also reported using additional technological resources to educate others as opposed to having these conversations themselves, such as by sending their adolescent’s teachers informational videos on diabetes (T4, Q33).
Health management resources
Our approach for this subtheme varied from the original definition presented by the model of Holden et al as our participants primarily discussed health management resources in terms of the physical technologies used to manage their or their adolescent’s diabetes, as opposed to their access to organizational elements that aided in self-management. Such resources included blood glucose monitoring devices, insulin pumps, logbooks, and smartphones.
Blood Glucose Monitoring Devices
Although a minority of participants reported using a CGM to manage their or their adolescent’s diabetes, overall, CGMs were discussed in a highly positive manner. Many adolescents and parents praised the convenience of the technology, as it offers features such as producing notifications as changes in blood sugar are detected (T4, Q34), exhibiting how quickly blood sugar levels are changing (T4, Q35), assessing trends over time (T4, Q36), producing visual aids (e.g., charts, graphs), syncing information with multiple smartphones, and having a simple interface, among others. Participants reported that these features facilitated communication within dyads and limited the cognitive effort required to manage diabetes for both dyadic members (T4, Q37). The charts and graphs produced by the CGM were frequently praised for their usefulness, as they helped to identify trends retrospectively and make adjustments to treatment procedures (T4, Q38). However, some expressed frustrations that their technology could not produce charts with the exact information they desired (T4, Q39). Dyads also reported using these charts for doctors’ visits (T4, Q40).
While most participants stated that they found their CGM useful, some negative aspects were also mentioned. The most-discussed factor was the physical features of the CGM, as they were generally considered to be bulky, highly visible, and at times painful, which limited some adolescent’s willingness to wear them either consistently or entirely (T4, Q41). There were also reports of limited accuracy, delays in reporting, annoying notifications (in frequency and volume), or limited periods of time that data could be stored on the device.
Those who used traditional glucometers instead of CGMs expressed frustration with the increased work required of the manual monitoring system as well as a lack of confidence in their reliability (T4, Q42).
Insulin Pump
A minority of adolescents reported using an insulin pump to manage their diabetes, and many discussed how they had tried it and abandoned it or had never tried it at all. Overall, insulin pumps were widely cited to lower the workload for both dyad members in diabetes management. The most commonly mentioned advantage of insulin pumps was that adolescents no longer had to give themselves insulin shots when needed (T4, Q43). Other features included being able to control the insulin levels released (T4, Q44), the information it provides through charts and graphs (similar to that of CGMs) (T4, Q45), and the automatic calculation of insulin volumes. These features were perceived to ease stress levels for both parents and adolescents(T4, Q46).
Participants reported that the physical features of an insulin pump also affected an adolescent’s willingness to use it. While some praised their specific pumps for being wireless, many adolescents discussed how their non-wireless pumps were somewhat of an annoyance (T4, Q47). Similarly, one parent cited that their adolescent’s active lifestyle made the pump inconvenient to wear (T4, Q48). Some adolescents also preferred not to use the pump due to the size of the needle (T4, Q49).
Logbook
Many adolescents reported using a physical logbook to keep track of their blood sugar levels and/or food intake throughout the day (T4, Q50). Some reported carrying a book with them everywhere, while some had a book specific to their school or home. They reported that the logbook was a useful tool to discern patterns in their blood sugar changes over time (T4, Q51). One parent also reported that their doctors would review the logbook as a way to manage care and understand an adolescent’s accountability (T4, Q52).
Parents often reported that their adolescent’s attitude could affect their consistency in maintaining their logbook, which could impact their ability to notice patterns over time (T4, Q53). Adolescents reported that other factors, such as a change in environment or simple forgetfulness, can impact their ability to complete their tracking (T4, Q54).
Smartphones
The vast majority of participants discussed how their personal smartphone aided them in the management of their adolescent’s diabetes. The most-cited use of smartphones was for counting carbohydrates in meals, which would be done through general calorie-counting apps or by googling specific foods (T4, Q55). Although a minority of participants reported using diabetes-specific management apps, similar apps were used to log daily food intake, monitor weight, or track exercise. Some used the simpler features of the phone itself, such as the calculator app to add carbohydrate numbers or setting reminders to monitor their blood sugar (T4, Q56). One dyad mentioned how they did not use any apps due to their familiarity with diabetes and the food they ate (T4, Q57).
Other dyads used apps specific to diabetes management. Some apps were used to log their daily carbohydrate intake or activity levels, while others were synced with their continuous glucose monitor. Overall, these apps assisted dyads by providing clarity about their high or low blood sugar events by making patterns more noticeable, which allowed them to adjust their management techniques (T4, Q58).
Some parents mentioned using their phones to gather information about diabetes, such as through informational websites (e.g., American Diabetes Association) (T4, Q59) or social networking groups (e.g., Facebook support groups) (T4, Q60). These modes of information acquisition aided parents in communicating their adolescent’s needs to other responsible adults as well as facilitating the\care of their adolescent.
Mobile phones were also discussed as a key facilitator of communication within dyads, either directly through messaging and calling or indirectly through shared diabetes apps. This was viewed as especially important when parents and adolescents were physically separated as a means to share information about the status of the adolescent’s physical well-being (T4, Q61).
Many dyads mentioned how they preferred mobile technology to physically track information (T4, Q62). These functions were frequently mentioned to be more convenient as most participants mentioned how their phone is always on or near their person, as well as how the apps they used would store all of the information in one place. However, smartphone use was facilitated by specific contextual factors, such as access to Wi-Fi or the ability to access their phone in school or work (T4, Q63; T4, Q64).
Healthcare delivery services
Participants reported being in contact with a range of healthcare professionals to help manage their or their adolescent’s diabetes, including physicians, nurse practitioners, nutritionists, endocrinologists, and therapists. Most participants reported contacting their or their adolescent’s doctor immediately if anything alarming were to take place (T4, Q66) and expressed how helpful their physicians had been (T4, Q66). Additionally, healthcare professionals were often viewed as the final say when making changes to management plans (T4, Q67). Health care workers provided more than just clinical care, as one parent described how their nurse practitioner helped facilitate communication within their dyad, provided emotional support, and instilled responsibility in the adolescent (T4, Q68). While most participants cited their interactions with their healthcare providers as a positive and supportive experience, one parent described how she felt she lacked support from her adolescent’s doctor (T4, Q69) and another discussed how emergency respondents lacked the necessary knowledge of diabetes care when managing a low blood event (T4, Q70).
Although participants generally discussed healthcare delivery services in terms of their individual clinicians, some participants also framed their discussions in terms of the health facility itself. Many parents reported that it was easy to get in contact with their health facilities and doctors, and one parent similarly discussed how the presence of their care facility provided peace of mind when managing glycemic events (T4, Q71). A few participants discussed how their access to health care facilities was hindered by aspects such as distance (T4, Q72) or patient capacity (T4, Q73).
School nurses were consistently mentioned as a primary healthcare resource for adolescents, although participants stated there was wide variation in the levels of care they provided. When adolescents experienced high or low blood sugar events at school, they cited most frequently turning to the school nurses for assistance. Participants described how some schools required that the students check in with the nurse at least once a day (T4, Q74), while others noted having an unreliable presence of a nurse or not having a school nurse at all (T4, Q75).
Rules and roles
School-wide regulations or teacher-specific rules often impacted how adolescents managed their diabetes at school. As one parent described, following the general rules dictated by their adolescent’s school hindered their adolescent’s ability to manage their diabetes when the adolescent attempted to follow the school guidelines (T4, Q76). Conversely, many parents discussed how their adolescent had an established 504 plan at school, which dictated rules specific to their adolescent’s diabetes management at school and which may deviate from the regular school or teacher-specific policies (T4, Q77). For example, while many adolescents mentioned how their school may not allow them access to their phones throughout the day (T4, Q78), others were allowed special permission to carry their phones through their 504 plan (T4, Q79). School rules and regulations specific to diabetes management also varied across schools. Some schools mandated adolescents to visit the nurse’s office multiple times a day (T4, Q80) or report blood sugar events to their teachers when they occurred (T4, Q81), while other schools had no such requirements.
Parents often played a large role in regulating their adolescent’s daily routines and diabetes management. Many would perform tasks such as dictating when their adolescent woke up in the morning, counting carbohydrates, tracking health patterns, initiating changes to insulin therapy, performing overnight checks, keeping track of medical supply levels, offering reminders to check blood sugar levels, and encouraging proper diet and exercise habits, among others. Some were stricter in their oversight of their adolescent’s diabetes and often took on the majority of the tasks, which adolescents often but not always appreciated (T4, Q82). Conversely, some parents expressed that their role was minimal in managing their adolescent’s diabetes, describing how their adolescent was highly independent (T4, Q83). These parents still operated in a supervisory fashion but allowed their adolescents to take most of the responsibility for their care (T4, Q84). Adolescents described performing similar tasks as their parents, and some reported how their roles became similar to their parents’ roles as they grew older (T4, Q85).
Healthcare professionals also played a significant, although further removed role in dictating diabetes management. At routine care visits, doctors were described to review an adolescent’s health information (e.g., glycemic patterns, activity levels, food logs) and offer specified recommendations (e.g., when to check blood sugar, when to initiate changes in therapy, what foods to eat, how to improve activity levels), which parents and adolescents reported to be helpful (T4, Q86). Dyads additionally reported turning to healthcare professionals during abnormal health events (e.g., glycemic events, unusual heath patterns) to obtain medical advice and ensure they were performing the proper management tasks (T4, Q87). However, one parent discussed how they relied on their doctor less as they grew more confident in managing their adolescent’s diabetes (T4, Q88).
Structural properties
The systematic arrangement of individuals responsible for an adolescent’s diabetes management and the institutions in which these individuals spent considerable time influenced how dyads effectively managed their or their adolescent’s diabetes. Parents and adolescents alike mentioned how structural factors impacted their ability to detect glycemic events. Some adolescents reported that being at school made it easier to notice hyperglycemia as they would feel unfocused, while others claimed that being at school made it more difficult to notice due to distraction from friends (T4, Q89), occupation with schoolwork (T4, Q90), or constantly sitting down.
The structure of parents’ work schedules was often mentioned as influencing their ability to help manage their adolescent’s diabetes. For example, being at work may prevent parents from checking their phones frequently or keeping their notification sound on. One parent also mentioned how her work schedule sometimes interfered with her adolescent’s doctor appointments (T4, Q91). In contrast, a few parents reported being employed by their adolescent’s school and thus were in relatively close proximity to their adolescent throughout the day which aided in managing their adolescent’s diabetes when glycemic events occurred (T4, Q92). The structural arrangement of the parent and adolescent in physical spaces, such as in their home (T4, Q93) or in broader geographical areas (T4, Q94), also impacted how they jointly managed their or their adolescent’s diabetes.
Workload
Adolescents and parents both described the significant workload required for managing their or their adolescent’s diabetes. Many adolescents described the inconvenience of managing their diabetes alongside their other daily activities, even if they were knowledgeable about and comfortable with the steps to take, as diabetes management tasks were often described to interfere with events such as school, work, or extracurricular activities (T4, Q95). In one instance, an adolescent described how the work required to manage a glycemic episode during the night added to his workload the following day (T4, Q96). Some adolescents additionally noted struggling with the unpredictability of their disease, as the relationship between certain factors influencing their blood sugar (e.g., specific foods, exercise, sickness) could be difficult to discern (T4, Q97). Overall, many participants expressed an aversion to taking on additional workload related to diabetes management (T4, Q98). Even when certain actions were deemed necessary to control glycemic events, adolescents still described how these tasks had a high associated workload and were generally unfavorable (T4, Q99). Despite the widely discussed inconvenience of diabetes management tasks, most adolescents reported that their perceived workload had lightened over time due to increased knowledge of the disease or updated technologies (T4, Q100).
Adolescents often discussed how receiving help from their parents in managing their diabetes lightened their individual workload, as parents described taking on an array of tasks including reminding their adolescent to perform blood sugar checks or take insulin, treating their adolescent’s glycemic events (T4, Q101), and educating other adults (T4, Q102), which taken together were described to be a significant amount of work (T4, Q103). Many parents also mentioned the difficulty of balancing the workload of their adolescent’s diabetes management with their other daily responsibilities (e.g., work, social events) (T4, Q104), and noted that diabetes management could not always take priority (T4, Q105). One parent also described how non-compliance from their adolescent made managing her diabetes more difficult (T4, Q106). Similar to their adolescents, parents frequently described how at the time of diagnosis, the volume of information and tasks given to them were overwhelming and confusing (T4, Q107), but many reported that it became more manageable over time due to factors such as greater familiarity with the condition and required tasks, more education, or greater cooperation of the adolescent (T3. Q108).
Fear and anxiety play a significant role for both parents and adolescents in managing diabetes. After having a life-threatening event, one adolescent described experiencing intense anxiety surrounding their diabetes care. Parents described similar mental strain during glycemic events (T4, Q109), and most parents expressed living in a state of constant anxiety over the state of their adolescent’s health (T4, Q110; T4, Q111).
Multiple dyads discussed the benefits of technology in decreasing stress, often by improving the communication of health information within dyads (T4, Q112). Adolescents also frequently mentioned how specific features of their diabetes management devices eased their workload, such as their CGM notifying them of glycemic events rather than having to perform a finger prick themselves (T4, Q113), or an insulin pump limiting the physical effort required to correct their insulin levels (T4, Q114).
Parents also mentioned the value of receiving support, both physical and emotional, from those with a good understanding of their adolescent’s diabetes. One parent described the benefits of the support she received from her parents (T4, Q115), and another expressed her gratitude for a lightened workload when the extended family offered assistance (T4, Q116). Although parents generally noted appreciating external help, some also mentioned not wanting to burden others with the workload associated with managing their adolescent’s diabetes (T4, Q116).
Disruptions and distractions
Diabetes management routines were reported to be disrupted by a variety of physical, social, and technological factors. Disruptions specifically to adolescent’s blood glucose levels were attributed to their dietary habits, social interactions, and participation in activities. Dyads discussed how specific foods, or the miscalculation of carbohydrate amounts caused distinct shifts in their or their adolescent’s blood sugar levels, which would then require additional management steps to correct (T4, Q118). Disruptions to their eating habits were noted to be more likely to occur when there were disruptions to the adolescent’s routine. For example, one adolescent mentioned how eating at restaurants may cause disruptions in calculating his carbohydrate intake (T4, Q119), and a mother described how her adolescent’s visits to their father’s house often led to a disruption in the foods he ate, his blood sugar levels, and his overall care routine (T4, Q120). Physical and biological factors were also described to play a key role in disrupting regular glycemic patterns. Parents and adolescents reported that heightened activity levels made blood sugar levels unpredictable and thus altered their typical care patterns (T4, Q121). Dyads also mentioned how additional biological factors, including sickness, hormones, medication, and stress could cause irregular health patterns and would thus require different management steps to care for (T4, Q122; T4, Q123). Similarly, one dyad discussed how managing an additional chronic health condition disrupted their use of resources specific to diabetes management (T4, Q124).
Participants mentioned how disruptions in the availability or accuracy of the equipment they used to manage their diabetes interfered with an individual’s ability to respond to glycemic events (T4, Q125; T4, Q126). Technological malfunctions were often reported to disrupt management routines by hindering communication within dyads and creating more work for the individual (T4, Q127; T4, Q128). Apart from their physical resources, participants also discussed how policies at their or their adolescent’s school may disrupt diabetes management routines by limiting phone access, making it difficult to check blood sugar levels, or performing management tasks in public (T4, Q129). One adolescent mentioned that although school policies accommodate the needs of diabetic adolescents, the differing policies on eating for diabetic students and their peers generated discomfort for adolescents with diabetes (T4, Q130).
Distractions from routine management tasks were often mentioned by dyads, including sources such as social events, technology, busy schedules, or general forgetfulness, which made adolescents less attuned to their health condition (T4, Q131; T4, Q132; T4, Q133). Physical activities were also mentioned to distract adolescents from their typical care routines (T4, Q132).
Financial factors
Financial factors were most often mentioned by parents, and insurance was the most frequently mentioned factor about cost. Some participants discussed how their insurance covered most of their needed care (T4, Q135). However, many participants mentioned the cost limitations placed on the management resources they used due to their insurance, such as paying out of pocket for a backup glucometer, being unable to purchase the newest management supplies, or limiting their use of certain technologies (T4, Q136). Many adolescents mentioned the low cost of diabetes management phone apps in a positive light and acknowledged the option to access more complex, premium features, and one participant expressed negativity related to needing to pay for these features (T4, Q137). While multiple parents mentioned finances as related to the cost of diabetes management-specific needs such as technologies and supplies, one parent expressed how a need for broader financial security shaped their balance of working full-time and being physically present to care for their adolescent (T4, Q138).
Legal and policy factors
Only a few dyadic pairs mentioned the impact of legal or policy factors on diabetes care, and when mentioned, it was discussed only by parents. Several discussed how the legal policies required to be implemented at their adolescent’s school by Section 504 of the Rehabilitation Act of 1973 supported adolescent’s diabetes management (T4, Q139). One parent mentioned how her experience as a substitute teacher in her adolescent’s school district revealed their school’s policy required by the Code of Virginia (section 22.1–174) to support diabetes through training sessions for staff members (T4, Q140).
Negative impacts of existing insurance policies were mentioned by multiple parents, who disclosed how their adolescent’s technological options for diabetes management or access to their phone were constrained by their current insurance policy (T4, Q141).
Health system values
Participants discussed the values they perceived from their interactions with healthcare professionals, health facilities, and additional institutions in which adolescents received health care. Dyads described how the health facilities they utilized provided them with a large clinical care team to attend to their or their adolescent’s diabetes, which were generally described to be caring and supportive of the adolescent. Most dyads described health care professionals to be leaders in establishing the direction of the adolescent’s care, and physicians were often said to be responsible for initiating changes in an adolescent’s management plan (T4, Q142). Clinicians were also reported to apply pressure to the adolescent to promote improved glycemic control (T4, Q143). While assistance from healthcare professionals was generally said to be appreciated, many dyads described how in some instances, these individuals may limit the care they provided to promote independence for the adolescent (T4, Q144). In other cases, institutions that provided healthcare delivery services were described a more supervisory role (T4, Q145).
Parents often expressed gratitude for the caring nature of members of their clinical team, particularly in terms of the time they committed to their adolescent (T4, Q146). In some cases, participants stated that the interactions they had with healthcare professionals surpassed purely clinical care, as healthcare professionals may go to greater lengths to ensure the comfort of both the parent and the adolescent (T4, Q147). Some healthcare professionals were reported to have played such a significant role in an adolescent’s care that a few participants noted they viewed them as supplementary parents (T4, Q148). Although the majority of interactions with healthcare facilities and personnel were described to be positive, one parent expressed how the organization of their care team sometimes prevented them from seeing their primary doctor as frequently as they would like (T4, Q149), and another described how they had been mocked by a nurse when they suspected their adolescent was a diabetic (T4, Q150).
Although adolescent’ schools were not considered to be formal health facilities, participants often mentioned how their or their adolescent’s schools prioritized medical care to look after adolescents with diabetes. Many parents reported being pleased with the care offered by their adolescent’s schools, although some school structures offered less management of an adolescent’s diabetes than others (T4, Q151). One parent described how the values exhibited by their adolescent’s school emphasized the need for greater parental involvement in providing health-related support to their adolescent in order to reduce the burden on teachers (T4, Q152).
Discussion
Work system model
While the majority of research that has utilized or expanded upon a patient work system model has examined the triad of person, task, and technology, our work sought to explicitly investigate the macroergonomic factors that compose the patient work system in chronic disease management. As defined by Holden et al., 21 each of the social, physical, and organizational contexts and their respective components were presented in our data, and the representation of these themes across the data generally aligned with their defining features within the patient work system model. However, certain themes were deemed to resonate more with this framework, while in other instances, the variability between our data and the pre-defined factors highlights the need to adapt certain aspects of the framework to more accurately reflect the lived experience of our participants.
Social context
Social support and engagement play a significant role in the management of an adolescent’s diabetes. In the context of patient work that is performed within a dyadic arrangement and surrounded by a broader care network, it was necessary to distinguish these levels of social support in our analysis. For example, dyad members were typically the most engaged, informed, and active in diabetes management routines, thus making the support parents offered their adolescents highly specific and attuned to the needs of their adolescent (e.g., tracking health patterns over time, initiating changes to management routines), while members of the extra-dyad social network offered support at a more general level (e.g., reminders to check blood glucose, general health checks). Consequently, in these and similar types of caregiving arrangements, we propose that future iterations of patient work system models distinguish between levels of social support. While our work empirically differentiated between intra-and extra-dyad social support, it may be useful to further distinguish other levels of support based on degrees of involvement with an individual’s chronic disease management. Such distinction would extend beyond the dyad, first encompassing those who are more intimately involved with care (e.g., second parent, sibling, school nurse,), followed by those who are less intensely involved with care (e.g., friends, parents of friends, athletic coaches). The proposal to introduce levels into the patient work system could similarly be explored within other work system elements, for instance by distinguishing between tools and technologies that are used regularly (e.g., CGM) and those that are used less frequently (e.g., logbooks).
Interpersonal influence was originally conceptualized as the influence of social network members on the patient, and while our study validated this interpretation of interpersonal influence, it also supported its expansion in the direction of the patient’s influence on others. Although adolescents often relied on support provided by social networks external to their dyad, multiple participants described how adolescents may shield health management tasks from members of their social networks either out of annoyance or out of concern of burdening others, even if an adolescent felt that their own workload would be reduced by receiving assistance with certain tasks. This was echoed in a previous study by the senior author, in which participants described improving their communication of health information to alleviate the burden on others in their social networks. Similar works have explored emergent social context themes including “working around others” and the “impact on others.”20,25 Taken together, we believe that the interpretation of the interpersonal influence subfactor can be formally expanded to more holistically account for the bidirectional nature of interpersonal influence.
Physical context
The elements of the physical context strongly aligned with the themes described by the work system model. Similar to other studies investigating the management of chronic diseases in home settings, our data described how individuals established workspaces in central, convenient locations (e.g., kitchen) within the home in which health management tasks were frequently performed.25 It is important to note, however, that most studies exploring health management from a human factors lens investigate older adults as the study population and are thus primarily centered around the home as the primary site of care.47 Conversely, our work explored the experiences of adolescents who engage in activities that require movement between various physical spaces, which requires the creation of ad-hoc workspaces when deemed necessary by their diabetes symptoms. This necessitates a better understanding of and design for how workspaces could adapt and move with the adolescent as they transition between physical spaces.
Organizational context
Although all organizational sub-themes were depicted in our data, the way in which some were represented varied from the original model defined by Holden et al.21 Prior literature has primarily focused on the physical components of workload (e.g., the volume of health management tasks), and while our participants corroborated this interpretation, many described the significant cognitive workload accompanying diabetes management (e.g., stress, anxiety, and fear). Past efforts to quantify cognitive workload have utilized the NASA-Task Load Index (NASA-TLX) tool to focus on clinician workload during discrete periods of time, but limited work has explored the patient experience of cognitive workload throughout periods of continuous disease self-management.48,49 As such, there is a need to expand the NASA-TLX quantification system to encompass patients’ experiences and broaden future work system models to explicitly include and measure cognitive workload.
Our data further extended the communication sub-theme to include the significant technological component of communication that often facilitated or completely replaced interpersonal communication methods. As technology grows in its ability to extract, analyze, and share data between individuals, it is critical that the technological aspect of communication be included in the patient work system so that human factors professionals may design responsive digital health technologies that facilitate communication pathways. Routines were also often described to be a key factor in diabetes management, yet unlike other chronic health conditions in which management behaviors may be periodic (e.g., taking medications at specific times each day), our participants described the largely ad-hoc and continuous nature of their self-management routines. This form of routine might also be resonant with some other types of chronic health conditions that share similar characteristics with type I diabetes that may also require both ad-hoc and continuous management, such as Crohn’s disease.50 As participants frequently discussed how they actively routinized disruptions to their health patterns, future work system models may benefit from distinguishing between preventative and reactive routines, as has been done in similar literature.35
As T1D requires continuous attention and management, ad-hoc completion of health management tasks often takes place at institutions whose main function is not to provide healthcare services. As such, in the case of diabetes and other similar chronic conditions, the health system values subtheme of Holden et al.’s work system model can be expanded to include all spaces in which health management activities take place.51 This should also include organizations involved in the design of diabetes management tools, as our participants often complained of inadequate design elements of their equipment, such that design efforts can be dynamically responsive to that broader range of values.
Interacting contextual factors
Although the work system model theoretically emphasizes the importance of interacting macroergonomic factors and prior works have discussed such interactions, specific interactions are not explicitly labeled and represented in elaborations of work system models.9,21,23 In our data, we observed multiple interactions both between and within macroergonomic elements, indicating the need for such an elaboration. For example, several participants mentioned how intra-dyad communication methods are shaped by factors such as physical distance between parents and their adolescents, institutional policies, or technological availability; when parents and adolescents are in the same physical space they may primarily communicate verbally, but when an adolescent is at school the dyad’s communication may be instead facilitated by a school nurse or technology (e.g., texting, diabetes management apps). Furthermore, organizational policies that limit phone use during the day may require dyads to alter their typical modes of communication. We additionally observed how factors such as social support may interact with and shape a dyad’s perceived workload, as the intra- and extra-dyad support adolescents received (e.g., assistance completing management tasks, emotional support, equipment-sharing between diabetic peers) was often reported to reduce their physical and cognitive workload of diabetes management. The presence of key interactions between various subthemes calls attention to the need for a specific taxonomy that identifies and defines these interactions, as well as provides clear examples of how these interactions manifest among macroergonomic components.
Transitions of care
We conceptualize the period of shifting health management responsibilities between childhood and adulthood as a transition of care. In the case of most dyads, following a childhood T1D diagnosis, parents reported filling the role of an assumed caregiver as they perform the majority of diabetes management-related tasks. As their child ages, however, the adolescent often takes on more responsibility in managing their T1D and the parent’s role becomes more supportive in nature as reflected in our data. We observed that these transitions are both unique to the individual dyads and are shaped by other person-level factors such as time since diagnosis and adolescent attitude towards diabetes management. In many cases, such a transition from assumed care to supportive care was gradual over time, while in a handful of cases, this transition to independence occurred more rapidly due to other contextual factors (e.g., an adolescent’s school requiring more independence).
In addition to this long-term transition, our data also highlighted that smaller-scale transitions and handoffs occurred daily as adolescents navigated between different social, physical, and organizational contexts. Similar short-term transitions have been described in previous literature, such as nursing shift changes, hospital discharges, or changing care providers, which result in altering typical patterns of who performs care tasks, with what supplies, and where.16,17,52,53 In agreement with this literature, our data further reiterated that transitions of care, both long and short-term, may serve as a significant point of stress and uncertainty.6 For example, previous work has examined how handoffs within health systems often lead to miscommunications regarding patient health information, causing confusion about what tasks have been or need to be performed and can thus result in adverse events including medication errors, wrong-site surgery, and treatment delays.16,17,54,55 In our data, as adolescents adopted increasing levels of responsibility in performing diabetes management tasks, both dyadic members expressed concerns about whether the adolescent had performed certain tasks (e.g., checking blood sugar, dosing the proper amount of insulin) either correctly or at all. Previous work related to nursing handoffs has explored how expert and novice nurses gather and use information differently, and thus require special attention in designing handoff procedures between these different skill levels to successfully complete care tasks.56,57 In terms of the gradual transition of responsibility between parents and adolescents, a similar approach, accounting for the unique needs of both dyadic members, may need to be taken. This situation parallels the adolescent being a novice in managing their own diabetes but may require extension of human factors knowledge related to expert and novice performers of work given that the adolescent is an expert in living with the health condition.
Design Implications
The unique attributes of a dyadic approach to patient work require responsive design efforts. In the context of digital health solutions, there exist many opportunities to improve the usability and usefulness of specific interfaces. In accordance with our data, previous studies have shown that data sharing between diabetes patients and their caregivers can explicitly improve the quality of life for caregivers and adolescents through factors such as improved peace of mind, lower anxiety, greater confidence, fewer hypoglycemic events, and improved A1C.58,59 While current leading CGM brands (e.g., Dexcom Share, Dexcom, Inc., Guardian Connect, Medtronic Minimed Inc.) have recognized this need for shared situation awareness in diabetes management and have created options for patients to share their health information across mobile devices, there is an opportunity to further develop sharing capabilities. First, data sharing features are currently limited in scope to include only blood glucose data. Data sharing sources can be expanded to include information from the external environment, such as location, weather, activity levels, and scheduled events so that parents and adolescents can better predict, prevent, and respond to glycemic events. There is also an opportunity for these sharing features to provide educational materials and instructions for the data recipient on how to best respond to specific data being shared. This may be especially pertinent to broader social network members who may not be as familiar with what appropriate actions should to be taken in response to glycemic events.
As adolescents transition to managing their diabetes independently, it is also important that both parents and their adolescents have unique levels of control over what information is shared within dyads.60 Dexcom Share has developed different share options depending on the age of the patient (youth, adolescent, adult, or Medicare sharer) and patients can choose what information their ‘followers’ receive.61 In addition to the need for this functionality to be adopted by more CGM producers, there is an additional opportunity to make these sharing options more customizable (e.g., what information is shared, at what frequency, and at what level of detail) so that they may fit a wider range of both individual and dyadic needs. Furthermore, because the transition of management responsibilities is often gradual and not defined by a formal process, there is often a gap in the knowledge base that the adolescent receives from their primary informal caregivers. Other works describing transitions have discussed the potential benefit of individualized technology designed specifically for care transition planning.12 A specific tool that assessed the knowledge of T1D in an adolescent and worked to bridge that knowledge gap could be crucially helpful in preparing those individuals for independence. This system could include quizzes to assess knowledge and learning and employ proven gamification techniques to encourage continued use.48,66,67
A common theme discussed across our data was the complexity and unpredictability of health patterns, as the sheer volume of factors that influence blood glucose levels often makes it difficult for patients and caregivers to predict glycemic events and discern what may be the most significant cause of high or low blood sugar. Recent advances in artificial intelligence (AI) may prove key for distinguishing complex patterns from distinct combinations of individualized biometric predictors and external factors that adolescents and parents may be unable to easily recognize. Our data illustrate the many ways in which social, physical, and organizational factors can shape both day-to-day health management and the experience of a glycemic event as well as how these events are prevented and responded to. Typical AI algorithms serving as diabetes decision support systems, however, predominantly rely on biometric data and are thus decontextualized from the spaces through which the individual moves.62,63 As such, there is an opportunity to improve the accuracy and individual responsiveness of these forecasting algorithms by incorporating contextual macroergonomic factors that interact with and shape biometric measures.
Outside of the technological solution space, human factors and ergonomics professionals might aid in pursuing additional solutions that would create better alignment with social, physical, and organizational contexts in which dyads are embedded. For example, spaces such as schools where adolescents spend significant time might create designated non-clinical (i.e., school nurses’ office) and non-restroom spaces in which adolescents could perform necessary self-management activities. Such an action parallels efforts to create similar spaces for breastfeeding mothers and is grounded in the social rather than medical model of disability. Other efforts could include policy advocacy, requiring a greater number of teachers, coaches, and others working with adolescents living with chronic health conditions to receive more in-depth training on how to provide necessary support as a mechanism for improving patient safety. Our data further showed that clothing worn by adolescents does not always align with the technologies they use to self-manage their T1D, further pointing to the need for adaptive clothing that is responsive to the daily needs of these adolescents. Overall, while the design implications presented here stem from grounding in a patient work system model, they carry the potential to be mapped to other frameworks for improving chronic disease management, such as the Chronic Care Model. In particular, our recommendations mapped to the community resources, self-management support, and decision support as elements to target to improve dyadic diabetes management.64–66
Limitations
This study has a few limitations of note. First, as data collection asked that participants recall their personal experiences, it is possible that their recollections were skewed by recall bias. Second, data were collected between 2016–2019, and thus may not fully reflect recent technological developments in the field of diabetes management. Third, our study population was very limited in its distribution of race and ethnicity. Although we performed maximum variance sampling to try to include individuals with the widest possible range of identities, the nature of the location and patient population of the recruiting clinic served as a limitation to achieving the desired demographic diversity of the study population. We acknowledge that our study does not encompass the full range of voices that must be included in such research and, therefore, should only be considered as a starting point for our understanding of dyadic care management during adolescence. Finally, although we explored the social context, we did not systematically elicit all of the individuals who may comprise the social context, leading to gaps in understanding what roles specific individuals play in health management. Related to this point is that although our study focused on dyadic management, there may be adolescents embedded in other forms of care management such as triadic management in which more than one adult, for example, assumes an equitable role with the adolescent and one other adult.
Future work
We envision three key pathways to build on the work presented here. Although we attended to transitions of care, this study was cross-sectional in nature. An opportunity exists to build on this work and longitudinally assess how the patient work system changes for both members of the dyad across the patient journey throughout adolescence.13 Additionally, similar work should be performed in other geographic regions that serve a more diverse community of adolescents to understand how dyadic experiences differ across a wider range of adolescent and parent identities and demographics. There is also an opportunity to conduct a systematic assessment of the roles that individuals in the social network play to better understand their interactions with the dyad, what information they need, and what support they need. This may include quantitatively assessing the impact of dyadic management and more explicitly exploring parent-adolescent relationships, including moderating factors such as levels of maturity and interdependence, as well as the difference in perceptions of diabetes care between parents and adolescents. Exploring care networks surrounding dyads could also serve as a foundation for developing digital health and other forms of interventions, as has been done for patients who manage their own health and for caregivers who manage someone else’s health.45,67,68
Conclusions
Dyadic health management is a newer concept that remains largely unexplored in the human factors and ergonomics literature. This work serves as an investigation of how specific factors within the social, physical, and organizational contexts shape the dyadic management of T1D during the transition of care that occurs within a dyad throughout adolescence. A summary of key findings based on our interview data for each macroergonomic context can be found in Table 2. While our findings support previous work in the human factors and ergonomics field, they also call for a more expansive notion of what factors a patient work system model should encompass to best represent the context that the dyad is embedded in. In addition to expanding upon certain social, physical, and organizational factors, efforts must also examine and explicate the interactions between macroergonomic factors to develop a holistic understanding of dyadic patient work systems. There is also a need to design solutions explicitly aimed at transitions of care, including those that occur throughout the day and those that occur over longer periods of time. Using these findings, we highlight new opportunities for design-related efforts that target both technological and non-technological solutions to ultimately improve the management of T1D for dyads during the period of adolescence.
Supplementary Material
Table 5.
Key findings in relation to the work system model and dyadic diabetes management
| Macroergonomic context | Key findings |
|---|---|
| Social context | • In the context of adolescent T1D management, dyads lie at the center of the social context. • Parents play a key supervisory role in adolescent diabetes management, but adolescents generally adopt more responsibility as they grow older and more comfortable with management tasks. • In dyadic care structures, parents play the key support role for the adolescent, providing physical, mental, and emotional support. • Typically, mothers play a larger role than fathers in supervising and promoting diabetes management, with many desiring a more egalitarian distribution of responsibilities between themselves and the adolescents’ fathers. • Individuals further removed from the dyad may lack specific medical knowledge about management tasks, but still play an important role in providing emotional support and encouraging positive diabetes management behaviors for adolescents. • Forming connections with other individuals with T1D can provide important support structures for both parents and adolescents that facilitate T1D management. • Interpersonal influence is bidirectional in nature and impacts how adolescents manage their care. • Adolescents often defer to those with more expertise (e.g., parents, doctors) when making key diabetes management decisions. • Healthcare professionals often provide more than just medical support, often serving as an emotional support structure for dyadic members. • Healthcare professionals encourage the transition of responsibility for diabetes management from parents to adolescents while reaffirming parental supervision when adolescents achieve poor diabetes outcomes. • Parents perceive their children to defer more to doctors when considering adjustments to health management routines, while adolescents prefer receiving assistance from their parents over that of other caregivers. |
| Physical context | • Diabetes management is highly continuous and ad-hoc in nature, thus spanning multiple physical contexts. • Workplaces for diabetes management are established as needed, often outside of the primary site of care and, at times, away from spaces used for other daily activities. • While some dyads kept most of their diabetes management supplies in specific workplaces, others preferred to always keep certain portable items (e.g., logbooks, insulin) with them. • The physical proximity of members of the dyad influences the use of diabetes management technology and methods of health information communication. • Weather has a significant impact on the level of physical activity an adolescent partakes in, influencing the incidence of glycemic events. • The lack of proximity of elements of the physical environment (e.g., healthcare facilities, management equipment within the home) can make adolescents more prone to glycemic events or hinder how they manage glycemic events. • The availability of technology (e.g., treadmill, video game consoles) in the home has positive and negative influences on physical activity levels. • As many physical contextual factors contribute to the onset of glycemic events, it can be difficult to identify patterns and predict future symptoms. |
| Organizational context | • Cognitive workload is a significant component of diabetes management, as dyad members often experience feelings of stress, anxiety, and fear surrounding the occurrence and impact of poor health symptoms. • Dyads often feel that their workload lightens over time as they gain experience managing T1D, but still perceive management tasks as burdensome. • Parents often assume a heavier workload to ease the burden of T1D management on their adolescent, especially when the adolescent is younger or first diagnosed. • Technology is used frequently to enhance and facilitate communication of health information, alleviating stress within the dyad, but concerns about its accuracy and reliability abound. • Adolescent initiation of communication is often in response to significant glycemic events, especially hypoglycemic events. • In response to a lack of physical proximity and different policies related to communication, many parents rely on other adults in the adolescents’ vicinity (e.g., school nurses) to maintain consistent communication of health information on their adolescents’ behalf. • School nurses tend to be the main intermediary between parents and adolescents during the school day, but some participants note nurses’ unreliable presence. • Routines, both for diabetes management and for general daily tasks, are developed and fine-tuned over time as dyads become more knowledgeable about their personal experiences of diabetes management. • Dyads establish both proactive and reactive routines to detect and treat T1D symptoms, but these routines can be disrupted by factors spanning social, physical, and organizational contexts. • Management tasks and health information communication can be facilitated or hindered by rules established in specific locations (e.g., school policies). • Organizations that are not designated healthcare facilities are highly relevant to continuous disease management and must be expanded upon in future work • The organizational contexts of institutions beyond the home and clinic, such as the school and workplace, are relevant to the experience of dyadic T1D management. • Inconvenient physical aspects of health management resources deter adolescents from using certain tools and technologies. • Insurance policies and financial factors often constrain the management resources available to dyads. |
Acknowledgements
The National Library of Medicine at the National Institutes of Health (R01-LM012090) funded the study. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Footnotes
Declaration of Interest
DC and SDP are employees of Dexcom, Inc, which is a company specializing in the development, manufacturing, production, and distribution of continuous glucose monitors. JPC is an employee of Tandem Diabetes Care, a company specializing in diabetes management technology development, and receives royalties from Dexcom, Inc. The remaining authors have no conflicts of interest to declare.
References
- 1.Holden RJ, Cornet VP, Valdez RS. Patient ergonomics: 10-year mapping review of patient-centered human factors. Applied Ergonomics. 2020;82:102972. doi: 10.1016/j.apergo.2019.102972 [DOI] [PubMed] [Google Scholar]
- 2.Valdez RS, Holden RJ, Hundt AS, et al. The Work and Work Systems of Patients: A New Frontier for Macroergonomics in Health Care. Proceedings of the Human Factors and Ergonomics Society Annual Meeting. 2014;58(1):708–712. doi: 10.1177/1541931214581165 [DOI] [Google Scholar]
- 3.Corbin J, Strauss A. Managing Chronic Illness at Home: Three Lines of Work. Vol 8.; 1985. [Google Scholar]
- 4.Holden RJ, Valdez RS. Patient Ergonomics: The Science (and Engineering) of Patient Work. In: The Patient Factor. CRC Press; 2021. [Google Scholar]
- 5.Holden RJ, Abebe E. Medication transitions: Vulnerable periods of change in need of human factors and ergonomics. Applied Ergonomics. 2021;90:103279. doi: 10.1016/j.apergo.2020.103279 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Werner NE, Gurses AP, Leff B, Arbaje AI. Improving care transitions across healthcare settings through a human factors approach. Journal for Healthcare Quality. 2016;38(6):328–343. doi: 10.1097/JHQ.0000000000000025 [DOI] [PubMed] [Google Scholar]
- 7.Thompson MJ, Reilly JD, Valdez RS. Work system barriers to patient, provider, and caregiver use of personal health records: A systematic review. Applied Ergonomics. 2016;54:218–242. doi: 10.1016/j.apergo.2015.10.010 [DOI] [PubMed] [Google Scholar]
- 8.Yin K, Jung J, Coiera E, et al. Patient work and their contexts: Scoping review. Journal of Medical Internet Research. 2020;22(6):e16656. doi: 10.2196/16656 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Holden RJ, Schubert CC, Mickelson RS. The patient work system: An analysis of self-care performance barriers among elderly heart failure patients and their informal caregivers. Appl Ergon. 2015;0:133–150. doi: 10.1016/j.apergo.2014.09.009 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Abebe E, Scanlon MC, Lee KJ, Chui MA. What do family caregivers do when managing medications for their children with medical complexity? Applied Ergonomics. 2020;87:103108. doi: 10.1016/j.apergo.2020.103108 [DOI] [PubMed] [Google Scholar]
- 11.Ponnala S, Block L, Lingg AJ, Kind AJ, Werner NE. Conceptualizing caregiving activities for persons with dementia (PwD) through a patient work lens. Applied Ergonomics. 2020;85:103070. doi: 10.1016/j.apergo.2020.103070 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Arbaje AI, Werner NE, Kasda EM, et al. Learning From Lawsuits: Using Malpractice Claims Data to Develop Care Transitions Planning Tools. Journal of Patient Safety. 2020;16(1):52. doi: 10.1097/PTS.0000000000000238 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Carayon P, Wooldridge A, Hoonakker P, Hundt AS, Kelly MM. SEIPS 3.0: Human-centered design of the patient journey for patient safety. Applied Ergonomics. 2020;84:103033. doi: 10.1016/j.apergo.2019.103033 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Werner NE, Tong M, Borkenhagen A, Holden RJ. Performance-Shaping Factors Affecting Older Adults’ Hospital-to-Home Transition Success: A Systems Approach. Gerontologist. 2019;59(2):303–314. doi: 10.1093/geront/gnx199 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Werner NE, Rutkowski R, Graske A, et al. Exploring SEIPS 2.0 as a model for analyzing care transitions across work systems. Applied Ergonomics. 2020;88:103141. doi: 10.1016/j.apergo.2020.103141 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Black RL, Duval C. Diabetes Discharge Planning and Transitions of Care: A Focused Review. Curr Diabetes Rev. 2019;15(2):111–117. doi: 10.2174/1573399814666180711120830 [DOI] [PubMed] [Google Scholar]
- 17.Shook JE, Chun TH, Conners GP, et al. Handoffs: Transitions of Care for Children in the Emergency Department. Pediatrics. 2016;138(5):e20162680. doi: 10.1542/peds.2016-2680 [DOI] [PubMed] [Google Scholar]
- 18.Wooldridge AR, Carayon P, Hoonakker P, et al. Work system barriers and facilitators in inpatient care transitions of pediatric trauma patients. Applied Ergonomics. 2020;85:103059. doi: 10.1016/j.apergo.2020.103059 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Barton HJ, Loganathar S, Singhe N, et al. Exploring Work System Adaptations in Providing Care for Children with Medical Complexity in the Home. Proceedings of the Human Factors and Ergonomics Society Annual Meeting. 2020;64(1):675–679. doi: 10.1177/1071181320641156 [DOI] [Google Scholar]
- 20.Gorman RK, Wellbeloved-Stone CA, Valdez RS. Uncovering the invisible patient work system through a case study of breast cancer self-management. Ergonomics. 2018;61(12):1575–1590. doi: 10.1080/00140139.2018.1503339 [DOI] [PubMed] [Google Scholar]
- 21.Holden RJ, Valdez RS, Schubert CC, Thompson MJ, Hundt AS. Macroergonomic factors in the patient work system: examining the context of patients with chronic illness. Ergonomics. 2017;60(1):26–43. doi: 10.1080/00140139.2016.1168529 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Holden RJ, Valdez RS, eds. The Patient Factor: Applications of Patient Ergonomics. CRC Press; 2021. doi: 10.1201/9780429293009 [DOI] [Google Scholar]
- 23.Seale DE, LeRouge CM, Kolotylo-Kulkarni M. A Description of Personal Health Information Management Work With a Spotlight on the Practices of Older Adults: Qualitative e-Delphi Study With Professional Organizers. Journal of Medical Internet Research. 2023;25(1):e42330. doi: 10.2196/42330 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Weiler DT, Lingg AJ, Wilkins DM, Militello L, Werner NE. Exploring how Caregivers for People Living with Dementia Use Strategies to Overcome Work System Constraints. Appl Ergon. 2022;101:103689. doi: 10.1016/j.apergo.2022.103689 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Werner NE, Jolliff AF, Casper G, Martell T, Ponto K. Home is where the head is: a distributed cognition account of personal health information management in the home among those with chronic illness. Ergonomics. 2018;61(8):1065–1078. doi: 10.1080/00140139.2018.1435910 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Werner NE, Rutkowski RA, Holden RJ, Ponnala S, Gilmore-Bykovskyi A. A human factors and ergonomics approach to conceptualizing care work among caregivers of people with dementia. Applied Ergonomics. 2022;104:103820. doi: 10.1016/j.apergo.2022.103820 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.National Diabetes Statistics Report 2020. Estimates of Diabetes and Its Burden in the United States. Center for Disease Control; 2020. [Google Scholar]
- 28.Foster NC, Beck RW, Miller KM, et al. State of Type 1 Diabetes Management and Outcomes from the T1D Exchange in 2016–2018. Diabetes Technol Ther. 2019;21(2):66–72. doi: 10.1089/dia.2018.0384 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Shubrook JH, Brannan GD, Wapner A, Klein G, Schwartz FL. Time Needed for Diabetes Self-Care: Nationwide Survey of Certified Diabetes Educators. Diabetes Spectrum. 2018;31(3):267–271. doi: 10.2337/ds17-0077 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Diabetes Control and Complications Trial Research Group. The Effect of Intensive Treatment of Diabetes on the Development and Progression of Long-Term Complications in Insulin-Dependent Diabetes Mellitus. New England Journal of Medicine. 1993;329(14):977–986. doi: 10.1056/NEJM199309303291401 [DOI] [PubMed] [Google Scholar]
- 31.Kalra S, Mukherjee JJ, Venkataraman S, et al. Hypoglycemia: The neglected complication. Indian Journal of Endocrinology and Metabolism. 2013;17(5):819. doi: 10.4103/2230-8210.117219 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32.Patton SR, Dolan LM, Henry R, Powers SW. Fear of Hypoglycemia in Parents of Young Children with Type 1 Diabetes Mellitus. J Clin Psychol Med Settings. 2008;15(3):252–259. doi: 10.1007/s10880-008-9123-x [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Miller KM, Foster NC, Beck RW, et al. Current state of type 1 diabetes treatment in the U.S.: updated data from the T1D Exchange clinic registry. Diabetes Care. 2015;38(6):971–978. doi: 10.2337/dc15-0078 [DOI] [PubMed] [Google Scholar]
- 34.Monaghan M, Helgeson V, Wiebe D. Type 1 Diabetes in Young Adulthood. Curr Diabetes Rev. 2015;11(4):239–250. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 35.Hamilton K, Stanton‐Fay SH, Chadwick PM, et al. Sustained type 1 diabetes self‐management: Specifying the behaviours involved and their influences. Diabet Med. 2021;38(5):e14430. doi: 10.1111/dme.14430 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 36.Othman N, Wong YY, Lean QY, Mohd Noor N, Neoh CF. Factors affecting self-management among adolescents and youths with type 2 diabetes mellitus: A meta-synthesis. European Journal of Integrative Medicine. 2020;40:101228. doi: 10.1016/j.eujim.2020.101228 [DOI] [Google Scholar]
- 37.Shahbazi H, Ghofranipour F, Amiri P, Rajab A. Factors Affecting Self-Care Performance in Adolescents with Type I Diabetes According to the PEN-3 Cultural Model. Int J Endocrinol Metab. 2018;16(4):e62582. doi: 10.5812/ijem.62582 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 38.Kisokanth G, Prathapan S, Indrakumar J, Joseph J. Factors influencing self-management of Diabetes Mellitus; a review article. Journal of Diabetology. 2013;4(3):6. [Google Scholar]
- 39.Miller CK, Davis MS. The Influential Role of Social Support in Diabetes Management. Topics in Clinical Nutrition. 2005;20(2):157. [Google Scholar]
- 40.Nam S, Chesla C, Stotts NA, Kroon L, Janson SL. Barriers to diabetes management: Patient and provider factors. Diabetes Research and Clinical Practice. 2011;93(1):1–9. doi: 10.1016/j.diabres.2011.02.002 [DOI] [PubMed] [Google Scholar]
- 41.van Doorn-Klomberg AL, Braspenning JCC, Wolters RJ, Bouma M, de Grauw WJC, Wensing M. Organizational determinants of high-quality routine diabetes care. Scandinavian Journal of Primary Health Care. 2014;32(3):124–131. doi: 10.3109/02813432.2014.960252 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 42.Cantin-Garside KD, Nussbaum MA, White SW, et al. Understanding the experiences of self-injurious behavior in autism spectrum disorder: Implications for monitoring technology design. J Am Med Inform Assoc. 2020;28(2):303–310. doi: 10.1093/jamia/ocaa169 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 43.Sandelowski M Focus on research methods: Whatever happened to qualitative description? Research in Nursing and Health. 2000;23(4):334–340. doi: 10.1002/1098-240x(200008)23:4<334::aid-nur9>3.0.co;2-g [DOI] [PubMed] [Google Scholar]
- 44.Sandelowski M What’s in a name? Qualitative description revisited. Research in Nursing and Health. 2010;33(1):77–84. doi: 10.1002/nur.20362 [DOI] [PubMed] [Google Scholar]
- 45.Valdez RS, Brennan PF. Exploring patients’ health information communication practices with social network members as a foundation for consumer health IT design. International Journal of Medical Informatics. 2015;84(5):363–374. doi: 10.1016/J.IJMEDINF.2015.01.014 [DOI] [PubMed] [Google Scholar]
- 46.Saldaña Johnny. The Coding Manual for Qualitative Researchers. Sage Publications; 2013. [Google Scholar]
- 47.Werner NE, Ponnala S, Doutcheva N, Holden RJ. Human factors/ergonomics work system analysis of patient work: state of the science and future directions. International Journal for Quality in Health Care. 2021;33(Supplement_1):60–71. doi: 10.1093/intqhc/mzaa099 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 48.Lowndes BR, Forsyth KL, Blocker RC, et al. NASA-TLX Assessment of Surgeon Workload Variation Across Specialties. Annals of Surgery. 2020;271(4):686. doi: 10.1097/SLA.0000000000003058 [DOI] [PubMed] [Google Scholar]
- 49.Malekpour F, Mohammadian Y, Malekpour AR, Mohammadpour Y, Sheikh Ahmadi A, Shakarami A. ASSESSMENT OF MENTAL WORKLOAD IN NURSING BY USING NASA- TLX. Nursing And Midwifery Journal. 2014;11(11):0–0. [Google Scholar]
- 50.Rogers CC, Moutinho TJ Jr, Liu X, Valdez RS. Designing Consumer Health Information Technology to Support Biform and Articulation Work: A Qualitative Study of Diet and Nutrition Management as Patient Work. JMIR Hum Factors. 2021;8(3):e27452. doi: 10.2196/27452 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 51.Holden RJ, Valdez RS, Schubert CC, Thompson MJ, Hundt AS. Macroergonomic factors in the patient work system: examining the context of patients with chronic illness. Ergonomics. 2017;60(1):26–43. doi: 10.1080/00140139.2016.1168529 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 52.Harries T, Rettie R, Gabe J. Shedding new light on the (in)compatibility of chronic disease management with everyday life – social practice theory, mobile technologies and the interwoven time-spaces of teenage life. Sociology of Health & Illness. 2019;41(7):1396–1409. doi: 10.1111/1467-9566.12952 [DOI] [PubMed] [Google Scholar]
- 53.Langstrup H Chronic care infrastructures and the home. Sociology of Health & Illness. 2013;35(7):1008–1022. doi: 10.1111/1467-9566.12013 [DOI] [PubMed] [Google Scholar]
- 54.World Health Organization. Transitions of Care. World Health Organization; 2016. Accessed October 23, 2023. https://iris.who.int/handle/10665/252272 [Google Scholar]
- 55.Smeulers M, Lucas C, Vermeulen H. Effectiveness of different nursing handover styles for ensuring continuity of information in hospitalised patients. Cochrane Database Syst Rev. 2014;2014(6):CD009979. doi: 10.1002/14651858.CD009979.pub2 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 56.O’Connell B, Penney W. Challenging the handover ritual. Recommendations for research and practice. Collegian. 2001;8(3):14–18. doi: 10.1016/s1322-7696(08)60017-7 [DOI] [PubMed] [Google Scholar]
- 57.Taylor C Assessing patients’ needs: does the same information guide expert and novice nurses? Int Nurs Rev. 2002;49(1):11–19. doi: 10.1046/j.1466-7657.2002.00098.x [DOI] [PubMed] [Google Scholar]
- 58.Polonsky WH, Fortmann AL. Impact of Real-Time CGM Data Sharing on Quality of Life in the Caregivers of Adults and Children With Type 1 Diabetes. J Diabetes Sci Technol. 2020;16(1):97–105. doi: 10.1177/1932296820978423 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 59.Welsh JB, Derdzinski M, Parker AS, Puhr S, Jimenez A, Walker T. Real-Time Sharing and Following of Continuous Glucose Monitoring Data in Youth. Diabetes Ther. 2019;10(2):751–755. doi: 10.1007/s13300-019-0571-0 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 60.Hannon TS, Moore CM, Cheng ER, et al. Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and Pilot Test. Journal of Participatory Medicine. 2018;10(2):e9652. doi: 10.2196/jopm.9652 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 61.Dexcom Follow App | Share with Family & Friends | Dexcom Provider. Accessed October 23, 2023. https://provider.dexcom.com/product/dexcom-follow-app
- 62.Nomura A, Noguchi M, Kometani M, Furukawa K, Yoneda T. Artificial Intelligence in Current Diabetes Management and Prediction. Curr Diab Rep. 2021;21(12):61. doi: 10.1007/s11892-021-01423-2 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 63.Vettoretti M, Cappon G, Facchinetti A, Sparacino G. Advanced Diabetes Management Using Artificial Intelligence and Continuous Glucose Monitoring Sensors. Sensors (Basel). 2020;20(14):3870. doi: 10.3390/s20143870 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 64.Coleman K, Austin BT, Brach C, Wagner EH. Evidence On The Chronic Care Model In The New Millennium. Health Aff (Millwood). 2009;28(1):75–85. doi: 10.1377/hlthaff.28.1.75 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 65.Jahn MA, Caldwell BS. Developing Distributed Expertise Coordination Models of Diabetes Care Teams. Proceedings of the Human Factors and Ergonomics Society Annual Meeting. 2018;62(1):556–560. doi: 10.1177/1541931218621127 [DOI] [Google Scholar]
- 66.Kroenke K, Corrigan JD, Ralston RK, et al. Effectiveness of care models for chronic disease management: A scoping review of systematic reviews. PM&R. 2024;16(2):174–189. doi: 10.1002/pmrj.13027 [DOI] [PubMed] [Google Scholar]
- 67.Valdez RS, Guterbock TM, Fitzgibbon K, et al. From loquacious to reticent: understanding patient health information communication to guide consumer health IT design - PMC. Journal of the American Medical Informatics Association. 2017;24(4):680–696. doi: 10.1093/jamia/ocw155 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 68.Valdez RS, Lunsford C, Bae J, Letzkus LC, Keim-Malpass J. Self-Management Characterization for Families of Children With Medical Complexity and Their Social Networks: Protocol for a Qualitative Assessment. JMIR Research Protocols. 2020;9(1):e14810. doi: 10.2196/14810 [DOI] [PMC free article] [PubMed] [Google Scholar]
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