Many adults with autism spectrum disorder (ASD) require assistance from direct support professionals (DSPs) to live and participate successfully in their communities. These DSPs provide daily support ranging from basic care needs, such as grooming, hygiene, dressing, and eating, to assistance in living independently and engaging in the community [1]. Responsibilities of DSPs are multifaceted, including shaping new skills; following treatment plans to decrease aberrant behaviors; transporting and assisting with vocational, recreational, and therapeutic activities; administering medication; communicating with diverse medical professionals; and documenting care administered and progress toward behavioral goals [2,3].

Throughout the United States, the demand for DSPs has far exceeded the supply [4-6]. In 2015, the estimated number of DSPs in the United States was 3.38 million [2]. By 2024, researchers anticipate a 26% increase in the need for personal care aides and a 38% increase in the need for home care aides [3]. High turnover is common, especially in DSPs working with individuals who present with behavioral challenges [7]. Before the COVID-19 pandemic, staffing shortages, overload, and stress contributed to a 20% vacancy rate and 44% turnover rate among DSPs [8,9]; shortages and turnover have only increased since then [10,11]. Alarming statistics indicate that 55% of DSPs leave within their first year of employment, with approximately 35% leaving within the first 6 months [3]. The most frequently reported reason for high turnover among DSPs is low salary. Other contributing factors include burnout from high stress, isolation, high likelihood of injury, insufficient supervision, lack of career advancement opportunities, and inadequate training [3,7].

A critical DSP responsibility is to record client behavior. This information is needed to evaluate progress with specific programming, assist in treatment decision-making, inform the client’s family and funding agencies, and communicate with DSPs working with a particular client [12]. Documentation requirements contribute significantly to DSP overload and stress, and turnover tends to increase workload, as DSPs left behind must generate detailed documentation to help orient new DSPs to their clients’ needs. Moreover, overworked DSPs may struggle to find time to document and share all relevant data about their clients during shift changes, in addition to completing other tasks, such as supporting medical and behavioral health needs or teaching workplace, social, and self-help skills. These documentation challenges leave adults with ASD, who rely upon DSPs, susceptible to medical errors and inadequate support, which can contribute to physical or emotional harm [7].

One way to address these documentation challenges is through the implementation of digital technology systems. Generally, technology refers to the use of various approaches (eg, algorithms and software) for data processing, with digital technology encompassing internet-based data processing through computers, mobile devices (eg, smartphones and tablets), and apps [13,14]. Although existing digital technology has the potential to increase documentation efficiency, the introduction of electronic health records (EHRs) into health care systems has demonstrated that it is critical that digital technology supporting documentation be designed to make it as easy as possible to input the required information. Several studies indicate that EHRs make it easier for health care providers to organize and access information, including physicians [15], residential staff in aged care facilities [16], and residential staff in agencies serving individuals with intellectual disabilities [17]. However, unfortunately, EHRs have actually decreased physician efficiency and hindered workflow because of the difficulty in recording patient data [18]. Providers often need to remember patient information or document it via paper and pencil until they are able to access a computer to enter it into the EHR [19], which can increase the likelihood of human error and inaccurate data [20]. Furthermore, physicians reported that usability issues, slow system response times, information overload, and difficulties finding information are associated with stress, burnout, and increased workload [18,21-25]. Because of the increased time spent on EHR-related tasks, physicians report working longer hours and completing documentation outside of work, which further contributes to stress and burnout [23-25]. A systematic review in 2022 indicated that over the past 5 years, EHR documentation time contributed to the symptoms of burnout, including cognitive and physical fatigue, perceived lack of autonomy, and poor work-life balance [18].

To address the limitations of EHR systems, researchers have begun to examine mobile technologies that facilitate in-the-moment documentation to improve both data accuracy and efficiency. The use of such mobile technology to support providers in collecting in-the-moment data has been demonstrated in the fields of special education and applied behavior analysis (ABA). Research conducted with special education teachers serving students with behavioral challenges explored the use of automated video and audio capture, with selective user archiving via a button press. The results indicated that the CareLog system, which offered these features, made it easier for teachers to collect in-the-moment data, and it was preferred to pencil-and-paper data collection, despite needing to watch and analyze video clips at a later time [26].

Furthermore, data collection software has been created specifically for collecting behavioral data during ABA services, which permits providers to enter in-the-moment data via a device (ie, mobile phone, tablet, and computer), review synthesized data, and track client progress [27]. With the ability to simplify data collection and analysis, aggregate client data, and create automated graphs, these web-based and mobile apps improve the documentation efficiency for ABA providers and increase the accuracy of data collection, both of which can contribute to improved care for clients.

Mobile technology has also been explored for in-the-moment data collection conducted by caregivers. Researchers explored the utility of the My JAKE mobile app, part of the Janssen Autism Knowledge Engine, for caregivers collecting in-the-moment, observational data on their child’s sleep quality, affect, and other behaviors. The app included alerts to remind caregivers to submit daily reports and permitted clinical teams to observe data in real time via the My JAKE dashboard. Caregivers consistently submitted daily reports and perceived the mobile app to be easy to use, suggesting that the My JAKE mobile app has important implications for clinical practice for children with ASD, including the ability of clinical teams to observe behavioral data while the child is at home, which could inform interventions [28].

Despite findings indicating that mobile and web-based technology can increase efficiency for in-the-moment data collection, most tools are targeted toward providers working with children, and little research has been conducted on the use of technology for in-the-moment documentation for DSPs working with adults with ASD. Thus, the utility of data collection systems via mobile technology for DSPs working with adults with ASD should be explored, as the work settings and data collection needs differ. The benefits of a digital technology support system for DSPs could include (1) reducing the DSP workload; (2) increasing the time DSPs spend interacting with adults with ASD; (3) enabling DSPs to provide more consistent and appropriate support; (4) increasing DSP job satisfaction; (5) improving medical and behavioral support for adults with ASD; and (6) providing a foundation for technology use that increases independence in adults with ASD, which ultimately leads to improved quality of life. Digital documentation could facilitate timely access to information about adults with ASD for diverse stakeholders who help support those adults, such as family members, therapists, behavior analysts, health care providers, and DSPs.

Despite the potential benefits of mobile technologies for reducing the burden of documentation, there is a dearth of research examining the utility of such technology for DSPs working with adults with ASD, highlighting a critical gap in the literature that this study addresses. This 2-part mixed methods study aimed to determine and prioritize how digital technology could help DSPs more easily produce, collect, present, and share data about their clients. Although it is widely known that DSPs significantly impact their clients’ quality of life, most research aiming to improve the quality of life of individuals with ASD focuses on interventions for these individuals. Owing to the unique aspects of a DSP’s job responsibilities and employment settings, it is necessary to use user-centered design practices to ensure that technological solutions will be useful, usable, and acceptable to DSPs. Through focus groups with DSPs, we captured their perspectives on current data collection and documentation needs, and their ideas on how digital technology could be applied to improve their ability to support adults with ASD. A nationally disseminated survey evaluated the usefulness of different features of technology and data entry methods across DSPs working in different settings for adults with ASD. Our summary of DSP thoughts about using technology on the job, quantitative rankings of the usefulness of potential technology innovations, and cited concerns can inform the development of technology that supports DSPs who work with adults with ASD.

This study complied with the American Psychological Association Code of Ethics and was approved by the Institutional Review Board of (Rowan University: Pro2020-001085). Informed consent was obtained via videocall from each participant. To maintain the privacy and confidentiality of participants, focus group data were deidentified, and survey data were collected anonymously. The focus group participants were compensated for their participation with a US $75 electronic gift card and survey participants could enter into a drawing for 2 US $75 electronic gift cards by providing their contact information via a separate link not associated with their survey responses.

Table 5 provides the usefulness percentages that the participants assigned to the technology features and data entry methods. The features with the highest usefulness percentage across participants included viewing all tasks for a current shift and who is responsible (106/153, 68.8%), viewing all tasks for a client in the current shift (103/153 67.3%), logging a completed task (102/153, 67.1%), viewing all tasks required of you during the current shift (101/153, 66%), and setting reminders for specific tasks (100/153, 65.4%). For the data entry methods, the highest usefulness percentages were for typing on a phone or tablet (103/153, 67.3%), choosing from options on a touch screen (99/151, 65.6%), and typing on a keyboard (100/153, 65.4%).

When analyzing qualitative responses regarding any concerns with technology to assist with data collection and documentation, the most frequent theme was that participants had no concerns to note (98/121, 90%). Concerns with technology centered on privacy (10/121, 8.3%; eg, HIPAA-compliant platform, data security if device was lost or stolen, and use in the presence of clients), reliability and accuracy of the technology (6/121, 5%; eg, potential for damage to devices or lost data, inaccurate interpretation or transcription of accents), complexity and efficiency of technology use (4/121, 3.3%; staff not technologically savvy, potential to add more time to documentation and take away time from client interactions), and potential for technology failure (3/121, 2.5%; internet outages and device crashing).

When considering the breakdown of features of technology that would be useful by location, the results indicated that participants considered different aspects of technology to be the most useful. See Table 6 for the rank order of features and the usefulness of the data entry methods. See Table 7 for the rank-order correlations of the features by work setting. The clinical setting was the most disparate from the other settings; rank-order correlations from those working in clinical and other settings ranged from a moderate negative correlation (−0.47) to a weak positive correlation (0.08). The rank-order correlations of the data entry methods are presented in Table 8. School was the most distinct from other settings, with weak negative to weak positive correlations (−0.18 to 0.09) for all settings aside from home, with a strong positive correlation between school and home (0.71). The rank-order correlation between participants 35 years and under and those over 35 years was weak, (r₁₃=0.10; P=.36). See Table 9 for the rank order of features and the usefulness of data entry methods by age. The rank-order correlation by median age showed a weak negative correlation (r₄=−0.09; P=.44).

Both the focus group participants and survey respondents indicated that a wide range of technological features could be useful. However, both also shared concerns about adopting technology during their day-to-day work. Moreover, there was no clear consensus on what features would be most useful across DSPs; rather, DSP age and their work setting influenced their ratings of the usefulness of different technology features.

Participants in our focus groups described experiences consistent with the literature on burnout and high turnover in DSPs who work with adults with ASD, including being short-staffed and overworked, having many simultaneous job responsibilities, and managing challenging behaviors [3,7]. Our participants raised notable concerns about pencil-and-paper data collection, including perceived poor accuracy. This finding is worrisome because timely and accurate data collection and reporting are critical for treatment decision-making, client safety (eg, medication administration), communication across stakeholders (eg, other DSPs, professionals, the family), and funder payment [12]. The concerns expressed by our participants are consistent with those of special education teachers, who face a high burden of manual data entry to accurately identify antecedents and consequences of behavior while simultaneously interacting with students [26].

Although participants described clear disadvantages of pencil-and-paper data collection, most participants reported that this method is still being used by DSPs to support adults with ASD. This data collection method may add to the DSPs’ stress and result in inefficient use of time. For example, DSPs often need to stay beyond scheduled shifts to complete documentation, must sift through binders of documents to locate the required information, and are challenged to recall data at the end of the shift. One DSP even described quickly writing notes about clients onto strips of tape placed on her hand, so that she could later transfer the information to paper documentation. Although there are several digital technologies designed to facilitate data collection and documentation for individuals who support children with ASD, a thorough review of freely accessible or commercially available platforms that are HIPAA compliant for data transmission revealed that there are no such tools specifically marketed for DSPs serving adults with ASD. Although it may be possible to adapt them, the tools designed for ABA providers working with children with ASD cannot fully meet the unique needs of DSPs serving an adult population (eg, multiple clients served by multiple DSPs and daily shift vs individual treatment sessions).

The DSPs in our focus group also indicated that automated video and audio capture and automated graphing of data could be beneficial. In fact, our participants noted that videos might be helpful in evaluating environmental variables that they may not have observed or captured in the moment. In addition, they recognized that digital technology could help facilitate communication across shifts and among different professionals, because many adults with ASD are served by teams of DSPs that transition in and out over days or weeks. Digital alerts and reminders can help facilitate the continuity of care across teams of DSPs.

Although the DSPs in our focus groups were receptive to using technology, they also voiced concerns about privacy surrounding the use of video and audio capture. These concerns could be addressed through technology that supports selective archiving, wherein an individual is required to engage in a specific action (eg, button press) to store captured video and audio [26]. The focus group participants also indicated that they would need portable technology that can be easily activated, devices that prevent client tampering or destruction, voice capture that accounts for different DSP accents and is not sensitive to client activation, data entry that does not depend on internet connectivity, and selective use of alerts to prevent alert fatigue and desensitization. However, DSPs have differing preferences about the use of personal devices, which could potentially be addressed through a solution that provides multiple different configurations.

To help identify specific features that would be most useful to DSPs, a survey asked DSPs to rate the usefulness of the different features of technology and data entry methods discussed during the focus groups. However, most participants considered nearly all features useful, with little differentiation between the top-ranked features and data entry methods. The features that DSPs viewed as the most useful differed by setting and DSP age. Survey respondents working in residential, day, and home settings considered different task views (ie, shift, client, and DSP) most useful. Meanwhile, DSPs who worked in community settings rated setting reminders the highest in terms of usefulness, whereas those who worked in schools rated logging completed tasks as the most useful. Finally, DSPs in clinical settings rated viewing common phrases that could be used to help write reports and asking other staff for help as the most useful; however, asking other staff for help was ranked 14 of 15 across all DSPs. Clients in clinical settings may be more likely to engage in challenging behaviors than those in other settings.

For data entry, there was more uniformity: typing on a phone or tablet to store information was in the first- or second-rank position for DSPs in all settings. That said, choosing from options on a touch screen was prioritized only by those in community, residential, and clinical settings. Different settings may have unique data entry needs based on the structure of the setting and the type of care provided.

Finally, the weak rank-order correlations suggest that different age groups of DSPs may have different preferences. This finding, together with comments that some DSPs are not particularly technologically savvy, suggests that digital technology for DSPs should feature easy-to-adopt components. Moreover, it is important to include a diverse age range of DSPs when pilot testing digital technologies to support their work and evaluating their usability.

The findings of this study extend the sparse literature on DSPs who work with adults with ASD to include DSPs’ perspectives on how technology can assist in improving efficiency and job satisfaction. Prior literature has documented that DSPs are in high demand [3]; however, stressors such as staffing shortages, a heavy workload, and documentation requirements contribute to a high turnover rate that further exacerbates the stress for the DSPs remaining in the field [7-9]. Our focus group findings support those reported in prior literature that documentation burdens, in addition to staffing shortages, contribute to DSPs feeling overworked and dissatisfied, specifically in the subset of DSPs serving adults with ASD.

In addition, although the literature on DSP stress, burnout, and turnover is well established [7-9], to date, no studies have documented DSPs’ self-reported perspectives on how technology might increase job satisfaction and decrease turnover. This study fills this gap by documenting DSPs’ perspectives on their needs. The addition of qualitative data on DSPs’ perspectives on what contributes to burnout, turnover, and inefficient documentation is critical for developing solutions that could increase job satisfaction and improve the quality of care for the clients they serve.

Our focus group and survey findings suggest that DSPs perceive technology as a helpful solution for increasing documentation efficiency. Prior literature has demonstrated the utility of technology to increase documentation efficiency and decrease workload in other fields (eg, special education [26]); however, to date, no study has examined how technology could assist DSPs in their daily work across settings (eg, residential, community). This study extends the literature by documenting DSPs’ perspectives on the usefulness of different features of technology and data entry methods that have the potential to increase the efficiency of completing daily job responsibilities such as documentation. The finding that participants perceived flexibility and mobility as benefits of using technology for data collection aligns with the mobile technology literature [18,26] and suggests that DSPs working with adults with ASD could benefit from some aspects of data collection technologies developed for providers serving children with ASD if features were adapted to their needs. However, some features prioritized by participants are unique to DSPs serving the adult population with ASD, such as shift-based documentation (eg, tasks to complete and multiple clients assigned), suggesting the need to develop innovative digital technology for this population.

Furthermore, our finding that technology preferences differ by age group of DSPs is consistent with the literature documenting significant differences in DSP behavior by DSP age when serving individuals with intellectual disabilities [39,40]. Together, the current studies set the stage for technology development for DSPs working with adults with ASD, which directly aligns with the New Jersey Council on Developmental Disabilities’ Position Statement on DSPs, suggesting the need to “evaluate and implement the use of technology as an option for support while simultaneously providing relief to the increased demand for support and support workers” [41].

This study has several limitations that warrant mention. Our focus group sample was limited to 15 DSPs working in a single geographic region. However, this sample included DSPs employed in different settings, ranging from a private home with a single resident to a day program at a large agency, as well as DSPs with a wide range of years of employment in the field (<1-20 years), which likely increases the generalizability of our results. Furthermore, the results relied on reports from DSPs about their experiences with data collection and technology use rather than direct observation. Future research should include observations of DSPs to further understand their needs. In addition, we did not measure participants’ familiarity with and comfort with technology, which may have influenced their perceptions of technology use. Future research should consider how these variables impact perceptions and use of newly developed forms of technology.

Meanwhile, to reduce the burden on survey participants, we did not ask them to rank-order features. Instead, we ordered features from the highest to the lowest usefulness percentages across participants. Many participants endorsed multiple features and data collection methods as useful, and the overall usefulness percentages were similar across the multiple response items. Although useful, these data do not provide a clear ranking hierarchy for those interested in developing technological solutions for DSPs. The survey also did not provide a description of how each technology feature might work in practice or address potential concerns; therefore, participants might have had different interpretations of these features, impacting their ratings. Moreover, the survey did not garner a large number of respondents from all work settings; hence, developing setting-specific solutions would require obtaining more input from DSPs who work in each setting. Finally, most participants who reported no concerns with technology may have simply responded as such to complete the survey and access incentive information.

To date, to our knowledge, no other study has examined DSPs’ perspectives on the utility of digital technology to facilitate improved work efficiency and job satisfaction when supporting adults with ASD. Given the heterogeneity in the DSP’s usefulness ratings, one important implication is that a comprehensive technology solution will need to be configurable and personalized. Before implementing certain setting-specific features, such as to-do lists and alert capabilities, which were rated as useful by participants, additional needs analysis is warranted on a setting-by-setting basis. Such features should be developed by first designing and then developing a prototype to meet the needs of a specific setting, keeping in mind that additional features will need to be added to enable a solution that is useful and relevant for DSPs in other settings. Digital technology that supports capturing and organizing information needed for the end of shift documentation is likely to be useful across settings, even if the content of the information and format of reports vary by setting.

Using the salient technology features and data collection methods documented in this study, existing tools and technologies designed to assist ABA providers working one-on-one with children in capturing in-the-moment behavioral data during scheduled programing could be adapted or novel digital technology solutions developed to meet the unique needs of DSPs serving multiple adults during shifts in unique settings (eg, residential and vocational). These tools can be used to help increase the accuracy of data collected by DSPs while simultaneously reducing the amount of effort expended on data collection. Reducing the data collection burden could help increase DSPs’ job satisfaction, potentially reducing turnover and increasing the quality of life for their clients.

In contrast, the DSPs noted that there are risks associated with adopting technology-based data collection tools, including potential loss of data or inability to capture new data during technology failures. Moreover, the DSPs’ comments suggest that it is unlikely that any single technology solution will be appropriate for capturing data about all adults with ASD, both because of client characteristics (eg, level of awareness that DSPs are recording data about them) and DSP preferences (eg, types of devices they could comfortably use to capture data while providing support to clients). The preferences of DSPs are critical to consider as they influence the acceptability and utility of a particular solution.

The benefits and risks of incorporating the technology reported by DSPs in this study have important implications for the future development of tools to support DSPs working with adults with ASD. In exploring technological innovations that could support DSPs who work with adults with ASD, it is imperative that we consider solutions that can be disseminated in the real world and integrated with existing practices and needs in the target setting. Tools intended to facilitate documentation must account for how DSPs can collect data in the moment (eg, when managing challenging behavior), in a portable manner (eg, in the community), during their scheduled shifts, and in a way that communicates critical information to multiple parties in an easy-to-understand manner. Moreover, given the differences in features and data collection methods prioritized by age and the recurrent theme that some DSPs are not technologically adept, digital technologies for DSPs should be simple and intuitive and users should be adequately trained. Considering that user acceptability is critical when developing assistive technology, it is especially important for DSPs, given that the National Alliance for Direct Support Professionals requires that DSPs learn and remain current with documentation management systems [25]. In addition, input from not only DSPs but also other stakeholders, such as behavioral supervisors, agency directors, and families, are important to consider, particularly, as other stakeholders are likely heavily involved in the selection of suitable technology and in the use of data collected.

Finally, this line of research could have a profound impact on the health and welfare of several other adults beyond those with ASD. DSPs help care for many populations in need of ancillary support, including elderly individuals, individuals with physical disabilities, and individuals with severe mental illness [1]. The results suggest that the potential benefits of technology for DSPs who work with adults with ASD may be applicable to other DSP groups that experience similar data collection and documentation burdens.

DSPs play a critical role in the care of adults with ASD. Targeted efforts must be made to mitigate high turnover rates, poor job satisfaction, and the burden of necessary data collection and documentation. This mixed methods study sets the stage for user-centered technology development that can help improve the effectiveness and job satisfaction of DSPs, and ultimately the quality of life of the clients they serve. The results across studies suggest that digital technology has the potential to provide tangible benefits but also highlights the need for a customizable, configurable solution that offers multiple features to meet the diverse needs of DSPs based on both their preferences and the needs specific to the setting in which they work.

Despite reporting that a wide range of technological features could be useful, DSPs across focus groups and survey responses indicated some concerns with adopting technology during their day-to-day work. Future research should identify setting-specific DSP needs and explore barriers to adopting data collection and documentation technologies, such as costs and adaptability in small operations, and consider preventive measures to protect confidentiality, minimize potential device damage, and prevent data loss.