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BACKGROUND: Although family caregivers play a critical role in care delivery, research has shown that they face significant physical, emotional, and informational challenges. One promising avenue to address some of caregivers' unmet needs is via the design of digital technologies that support caregivers' complex portfolio of responsibilities. Augmented reality (AR) applications, specifically, offer new affordances to aid caregivers as they perform care tasks in the home. OBJECTIVE: This study explored how AR might assist family caregivers with the delivery of home-based cancer care. The specific objectives were to shed light on challenges caregivers face where AR might help, investigate opportunities for AR to support caregivers, and understand the risks of AR exacerbating caregiver burdens. METHODS: We conducted a qualitative video elicitation study with clinicians and caregivers. We created 3 video elicitations that offer ways in which AR might support caregivers as they perform often high-stakes, unfamiliar, and anxiety-inducing tasks in postsurgical cancer care: wound care, drain care, and rehabilitative exercise. The elicitations show functional AR applications built using Unity Technologies software and Microsoft Hololens2. Using elicitations enabled us to avoid rediscovering known usability issues with current AR technologies, allowing us to focus on high-level, substantive feedback on potential future roles for AR in caregiving. Moreover, it enabled nonintrusive exploration of the inherently sensitive in-home cancer care context. RESULTS: We recruited 22 participants for our study: 15 clinicians (eg, oncologists and nurses) and 7 family caregivers. Our findings shed light on clinicians' and caregivers' perceptions of current information and communication challenges caregivers face as they perform important physical care tasks as part of cancer treatment plans. Most significant was the need to provide better and ongoing support for execution of caregiving tasks in situ, when and where the tasks need to be performed. Such support needs to be tailored to the specific needs of the patient, to the stress-impaired capacities of the caregiver, and to the time-constrained communication availability of clinicians. We uncover opportunities for AR technologies to potentially increase caregiver confidence and reduce anxiety by supporting the capture and review of images and videos and by improving communication with clinicians. However, our findings also suggest ways in which, if not deployed carefully, AR technologies might exacerbate caregivers' already significant burdens. CONCLUSIONS: These findings can inform both the design of future AR devices, software, and applications and the design of caregiver support interventions based on already available technology and processes. Our study suggests that AR technologies and the affordances they provide (eg, tailored support, enhanced monitoring and task accuracy, and improved communications) should be considered as a part of an integrated care journey involving multiple stakeholders, changing information needs, and different communication channels that blend in-person and internet-based synchronous and asynchronous care, illness, and recovery.
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BACKGROUND: The resources of West African mental health care systems are severely constrained, which contributes to significant unmet mental health needs. Consequently, people with psychiatric conditions often receive care from traditional and faith healers. Healers may use practices that constitute human rights violations, such as flogging, caging, forced fasting, and chaining. OBJECTIVE: The aim of this study is to partner with healers in Ghana to develop a smartphone toolkit designed to support the dissemination of evidence-based psychosocial interventions and the strengthening of human rights awareness in the healer community. METHODS: We conducted on-site observations and qualitative interviews with healers, a group co-design session, content development and prototype system build-out, and usability testing. RESULTS: A total of 18 healers completed individual interviews. Participants reported on their understanding of the causes and treatments of mental illnesses. They identified situations in which they elect to use mechanical restraints and other coercive practices. Participants described an openness to using a smartphone-based app to help introduce them to alternative practices. A total of 12 healers participated in the co-design session. Of the 12 participants, 8 (67%) reported having a smartphone. Participants reported that they preferred spiritual guidance but that it was acceptable that M-Healer would provide mostly nonspiritual content. They provided suggestions for who should be depicted as the toolkit protagonist and ranked their preferred content delivery modality in the following order: live-action video, animated video, comic strip, and still images with text. Participants viewed mood board prototypes and rated their preferred visual design in the following order: religious theme, nature motif, community or medical, and Ghanaian culture. The content was organized into modules, including an introduction to the system, brief mental health interventions, verbal de-escalation strategies, guided relaxation techniques, and human rights training. Each module contained several scripted digital animation videos, with audio narration in English or Twi. The module menu was represented by touchscreen icons and a single word or phrase to maximize accessibility to users with limited literacy. In total, 12 participants completed the M-Healer usability testing. Participants commented that they liked the look and functionality of the app and understood the content. The participants reported that the information and displays were clear. They successfully navigated the app but identified several areas where usability could be enhanced. Posttesting usability measures indicated that participants found M-Healer to be feasible, acceptable, and usable. CONCLUSIONS: This study is the first to develop a digital mental health toolkit for healers in West Africa. Engaging healers in user-centered development produced an accessible and acceptable resource. Future field testing will determine whether M-Healer can improve healer practices and reduce human rights abuses.
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Research in personal informatics (PI) calls for systems to support social forms of tracking, raising questions about how privacy can and should support intentionally sharing sensitive health information. We focus on the case of personal data related to the self-tracking of bipolar disorder (BD) in order to explore the ways in which disclosure activities intersect with other privacy experiences. While research in HCI often discusses privacy as a disclosure activity, this does not reflect the ways in which privacy can be passively experienced. In this paper we broaden conceptions of privacy by defining transparency experiences and contributing factors in contrast to disclosure activities and preferences. Next, we ground this theoretical move in empirical analysis of personal narratives shared by people managing BD. We discuss the resulting emergent model of transparency in terms of implications for the design of socially-enabled PI systems. CAUTION: This paper contains references to experiences of mental illness, including self-harm, depression, suicidal ideation, etc.