According to The National Alliance for Caregiving report, “Caregivers of Veterans –Serving on the Homefront,” the severe nature of veterans’ injuries and conditions, such as mental illness, post-traumatic stress disorder (PTSD), spinal cord injuries, and amputations, combined with the fact that the patient is typically a family member, often leads to high levels of stress and anxiety among the caregivers of veterans. In many cases, these caregivers have had to quit their jobs in order to provide continuum of care, and subsequently experience greater financial hardships than non-veteran caregivers. Veteran caregivers typically live with the person they are caring for and have been providing care for an extended period of time (in many cases, more than ten years). They often report sleep deprivation, are more likely to suffer from depression, and delay addressing their own healthcare needs.
The U.S. Department of Veteran Affairs (VA) recently funded a Clinic-in-Hand pilot project to give 1000 “VA caregivers”—those caring for seriously injured post-9/11 veterans—an iPad loaded with software applications selected to improve the lives of the VA caregivers and their veteran patients. This project, which was made possible by the Caregivers and Veterans Omnibus Health Services Act of 2010, has resulted in the design and development of five applications to address VA caregiver needs. Further, planning to begin the design of at least seven more similar applications is currently underway.
What We Did
We (the VA team) began by selecting five cities in which to conduct our participatory design sessions: Washington, DC; Baltimore, MD; Martinsburg, WV; Durham, NC; and Atlanta, GA.
Next, VA caregivers in each of the five locations took part in two participatory design sessions, equaling ten sessions in total, scheduled a few weeks apart during the summer of 2011. VA staff worked directly with caregivers to understand their needs, and to identify ways in which the applications could help them to accomplish their daily tasks. Each participatory design session lasted approximately four hours. Six additional caregivers were recruited to participate in usability assessments between design sessions. These sessions lasted approximately one hour each.
A visual simulation design tool called iRise was used to facilitate interactive, real-time modeling; the tool is capable of generating designs that range from low to high fidelity. Once a design or model is created, it can be stored on a standalone device or placed in a repository for access by authorized users. This allows users who were not able to participate in the original design sessions to contribute feedback. An electronic “sticky note” feature allows reviewers to provide comments on specific fields within the model.
The caregivers, most of whom were female, represented a range of ages and ethnicities. Between five and nine caretakers attended each session, during which they received snacks and lunch in exchange for their participation.
A significant number of the veterans our participant caregivers are caring for have been diagnosed with PTSD, traumatic brain injury (TBI), substance abuse, or depression. Some have multiple diagnoses. Others reported conditions including partial or complete paralysis due to stroke or spinal cord injury, cancer, and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
Caregivers’ familiarity with, and use of, the Internet varied a great deal; some caregivers reported using the Internet every day for tasks such as email, reference, or shopping, while others reported rare to no use of the Internet.
The Participatory Design Sessions
Each session opened with an icebreaker exercise designed to allow participants to get to know each other, and to increase the comfort with which they were able to discuss their daily routines and frustrations.
Participatory Design Session One
The first round of design sessions focused on determining an initial set of capabilities that should be incorporated into the caregiver iPad applications. VA facilitators began by eliciting input from the caregivers about their day-to-day tasks, pain points, and information they would like to receive that could be used to help reduce stress. Next, the caregivers began brainstorming and recording a preliminary list of information they need to track for their patients (and therefore need an application screen to support,) such as blood glucose readings. One of the resulting applications is an electronic journal, or eJournal (see Figure 1).
Caregivers discussed screen layout, including placement of elements such as dropdown menus and radio buttons. Each of the five groups contributed content and design ideas for all five applications, instead of having each group concentrate on only one or two applications—allowing for a broader range of input. The VA team generated basic designs and iteratively refined them in subsequent sessions until participants were satisfied with information presentation and workflow across screens.
The top five needs collectively identified by the five groups in session one were:
- Access to complete patient medical information from VA, and the ability to create electronic copies of non-VA health records.
- Improved communication with the care team, including secure messaging.
- Electronic appointment requests.
- Medication management, including online refill.
- Electronic journaling and the ability to share selected information, including images, with the care team.
Figure 2 shows the evolution of the eJournal tracking page as participant caregivers contributed to, and provided feedback on, the existing design. For example, participants added the ability to track and graph a number of vitals, such as blood pressure and blood glucose, as well as the functionality to print or email this information to a provider. This visual representation of the data provides caregivers and veterans’ care teams at-a-glance information about important health measures and trends.
Following the completion of the first participatory design session, VA caregivers performed usability assessments using the medium fidelity prototype to execute and obtain feedback using a series of tasks.
Six caregivers who had not participated in the initial design sessions were recruited to provide first impression feedback on the usability of the designs. During six one-on-one sessions, guided by a usability expert, participants executed scenarios in a think-aloud mode. The sessions were recorded so detailed post-session analysis could be performed. Additionally, VA design team members listened in on the sessions to hear firsthand feedback from caregivers about how the applications could be improved to be more intuitive and easier to navigate. Information received during the usability assessments helped the VA team pinpoint design flaws that led to user confusion. Feedback from the usability sessions was incorporated into the working designs prior to the second round of participatory design sessions.
Participatory Design Session Two
The second round of design sessions provided the opportunity for caregivers to make final changes to the designs, and validate that the current designs met their requirements for both utility and usability.
During these visits, the VA team solicited additional caregiver feedback on the designs. Caregivers added the ability to make a request to reschedule or cancel a medical appointment, and identified opportunities for improving usability, such as eliminating the use of certain icons that were not universally understood. These changes were made to the model on the spot, allowing the caregivers to confirm that the VA team had “gotten it right.”
At the end of the session, caregivers were given a script and instructions for accessing models within the repository, in case they wanted to continue to review the designs on their own time and provide additional feedback. Additional positive comments were received from a few of the participant caregivers.
The final products at the conclusion of session two were high fidelity models that were provided to VA’s development team as a set of visual requirements. Based on these models, developers began to create five applications to be used by VA caregivers—they are currently in various stages of development.
Looking forward, we are beginning to recruit caregivers to participate in usability assessments of the finished five applications, as well as to engage in creating and defining requirements for additional applications.
Learning from Caregivers
VA caregivers were very enthusiastic about this project and appreciated the VA’s recognition of the important role they play in providing care to veterans. Our team at the VA learned a great deal from this study and from our direct interaction with the VA caregivers. We learned that the logistics of transporting veterans to face-to-face medical appointments is time-consuming and frequently daunting. We also learned that alternative forms of communication, such as secure messaging and text messaging—particularly the ability to attach a photo—will allow providers to determine if an office visit is needed or if the patient’s needs can be met in a different way.
Caregivers assume tremendous responsibility when caring for a seriously disabled veteran; they often feel uncertain about their ability to handle the medical and interpersonal issues that routinely arise. Many caregivers asked for electronic “coaching” applications to help them manage, for example, stresses created by caring for a loved one with PTSD. While coaching applications were not included in this phase, they will be offered in future from the VA application store.
Finally, VA caregivers often feel isolated. Balancing family, work, and caregiving often leaves little time to meet their own needs. A number of caregivers who attended the design sessions remarked that the sessions themselves were like therapy, as they were able to talk to others who understood their challenges. Another future VA offering will be an online community in which caregivers can share information and provide support to each other.
This is the first time the VA has worked directly with VA caregivers on application design and usability assessments. We believe some of the applications being designed by this program may be useful for other veterans, or even persons who are not associated with VA. Applications will be published later this year and will be available at no cost to the general public in the VA application store, accessible via a landing page that will be placed on the Apple iTunes Store.
Caregivers are now being recruited to participate in usability assessments of all the applications the VA is currently developing. Caregiver input will loop back into the agile development process and be addressed in subsequent product iterations. Direct caregiver engagement in designing and assessing usability of the applications gives the VA a high degree of confidence that the final products will be both useful, and usable, to their target audience.
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