Combining mHealth Technology and Pharmacotherapy to Improve Mental Health Outcomes and Reduce Human Rights Abuses in West Africa: Intervention Field Trial.

Background: In West Africa, healers greatly outnumber trained mental health professionals. People with serious mental illness (SMI) are often seen by healers in "prayer camps" where they may also experience human rights abuses. We developed "M&M," an 8-week-long dual-pronged intervention involving (1) a smartphone-delivered toolkit designed to expose healers to brief psychosocial interventions and encourage them to preserve human rights (M-Healer app), and (2) a visiting nurse who provides medications to their patients (Mobile Nurse). Objective: We examined the feasibility, acceptability, safety, and preliminary effectiveness of the M&M intervention in real-world prayer camp settings. Methods: We conducted a single-arm field trial of M&M with people with SMI and healers at a prayer camp in Ghana. Healers were provided smartphones with M-Healer installed and were trained by practice facilitators to use the digital toolkit. In parallel, a study nurse visited their prayer camp to administer medications to their patients. Clinical assessors administered study measures to participants with SMI at pretreatment (baseline), midtreatment (4 weeks) and post treatment (8 weeks). Results: Seventeen participants were enrolled and most (n=15, 88.3%) were retained. Participants had an average age of 44.3 (SD 13.9) years and 59% (n=10) of them were male. Fourteen (82%) participants had a diagnosis of schizophrenia and 2 (18%) were diagnosed with bipolar disorder. Four healers were trained to use M-Healer. On average, they self-initiated app use 31.9 (SD 28.9) times per week. Healers watched an average of 19.1 (SD 21.2) videos, responded to 1.5 (SD 2.4) prompts, and used the app for 5.3 (SD 2.7) days weekly. Pre-post analyses revealed a significant and clinically meaningful reduction in psychiatric symptom severity (Brief Psychiatric Rating Scale score range 52.3 to 30.9; Brief Symptom Inventory score range 76.4 to 27.9), psychological distress (Talbieh Brief Distress Inventory score range 37.7 to 16.9), shame (Other as Shamer Scale score range 41.9 to 28.5), and stigma (Brief Internalized Stigma of Mental Illness Scale score range 11.8 to 10.3). We recorded a significant reduction in days chained (1.6 to 0.5) and a promising trend for reduction in the days of forced fasting (2.6 to 0.0, P=.06). We did not identify significant pre-post changes in patient-reported working alliance with healers (Working Alliance Inventory), depressive symptom severity (Patient Health Questionnaire-9), quality of life (Lehman Quality of Life Interview for the Mentally Ill), beliefs about medication (Beliefs about Medications Questionnaire-General Harm subscale), or other human rights abuses. No major side effects, health and safety violations, or serious adverse events occurred over the course of the trial. Conclusions: The M&M intervention proved to be feasible, acceptable, safe, and clinically promising. Preliminary findings suggest that the M-Healer toolkit may have shifted healers' behaviors at the prayer camp so that they commit fewer human rights abuses.

User-Centered Development of Bolster, an mHealth Intervention for Early Psychosis Caregivers: Needs Assessment, Prototyping, and Field Trial.

BACKGROUND: Caregivers play a critical role in the treatment and recovery of youth and young adults at risk for psychosis. Caregivers often report feeling isolated, overwhelmed, and lacking in resources. Mobile health (mHealth) has the potential to provide scalable, accessible, and in-the-moment support to caregivers. To date, few if any mHealth resources have been developed specifically for this population. OBJECTIVE: The aim of this study was to conduct user-centered design and testing of an mHealth intervention to support early psychosis caregivers. METHODS: We conducted a multiphase user-centered development process to develop the Bolster mobile app. In phase 1, a total of 21 caregivers were recruited to participate in a qualitative needs assessment and respond to an initial prototype of the Bolster platform. Content analysis was used to identify key needs and design objectives, which guided the development of the Bolster mobile app. In phase 2, a total of 11 caregivers were recruited to participate in a 1-week field trial wherein they provided qualitative and quantitative feedback regarding the usability and acceptability of Bolster; in addition, they provided baseline and posttest assessments of the measures of distress, illness appraisals, and family communication. RESULTS: In phase 1, participants identified psychoeducation, communication coaching, a guide to seeking services, and support for coping as areas to address. Live prototype interaction sessions led to multiple design objectives, including ensuring that messages from the platform were actionable and tailored to the caregiver experience, delivering messages in multiple modalities (eg, video and text), and eliminating a messaging-style interface. These conclusions were used to develop the final version of Bolster tested in the field trial. In phase 2, of the 11 caregivers, 10 (91%) reported that they would use Bolster if they had access to it and would recommend it to another caregiver. They also reported marked changes in their appraisals of illness (Cohen d=0.55-0.68), distress (Cohen d=1.77), and expressed emotion (Cohen d=0.52). CONCLUSIONS: To our knowledge, this study is the first to design an mHealth intervention specifically for early psychosis caregivers. Preliminary data suggest that Bolster is usable, acceptable, and promising to improve key targets and outcomes. A future fully powered clinical trial will help determine whether mHealth can reduce caregiver burdens and increase engagement in services among individuals affected by psychosis.

My Kidney Identity: Contextualizing pediatric patients and their families kidney transplant journeys.

BACKGROUND: Even though having a kidney transplant is the treatment of choice for children with kidney failure, it can cause anxiety for patients and their families resulting in decreased psychosocial functioning, adherence, and self-management. We set out to identify the information needs required to help pediatric patients and their families contextualize their posttransplant experiences as they recalibrate their understanding of normalcy throughout their transplant journey. METHODS: Participants submitted photographs related to feeling: (1) worried, (2) confident, (3) similar to peers without kidney disease, and (4) different from these peers. The photographs served as a foundation for an in-depth interview. RESULTS: Nineteen individuals (10 pediatric transplant recipients and 9 caregivers) were interviewed at a mean of 8 years posttransplant. We identified five specific themes and tensions our participants associated with recalibrating their version of "normal" throughout the transplant journey: (1) exchanging information (information consumers vs. information contributors, (2) transitional management (family management vs. self-management), (3) building confidence (worry vs. confidence), (4) telling one's story (hiding vs. self-expression), and (5) normalizing kidney transplantation (feeling different vs. feeling similar). These five themes/tensions form one's Kidney Identity, shift from negative to positive throughout the transplant journey, illustrating a more abstract and complex account of kidney transplantation over time. CONCLUSIONS: Having a patient view their Kidney Identity over time may support self-reflection of one's progress posttransplant and potentially help clinicians, patients, and their caregivers identify barriers and areas where they may need more support to ensure their successful engagement in their care.

A Digital Toolkit (M-Healer) to Improve Care and Reduce Human Rights Abuses Against People With Mental Illness in West Africa: User-Centered Design, Development, and Usability Study.

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.

Reflecting on patient-generated photographs of the pediatric renal transplant experience.

BACKGROUND AND OBJECTIVES: Poor self-management contributes to reduced renal allograft survival during adolescence and young adulthood. Providing patients with self-reflection tools to help explore the question "Is my experience normal?" may help mitigate these challenges. We explore Photograph-elicitation, a qualitative method where images are used to prompt individuals to talk about their personal experiences and values, engages pediatric transplant recipients and their families to generate insight into their experiences and the challenges they face after transplant. DESIGN, SETTING, PARTICIPANTS, AND MEASUREMENTS: Pediatric renal transplant recipients and one family member from Seattle Children's Hospital submitted 5 photographs showcasing their transplant story, which were used as prompts during semi-structured interviews. Interviews were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Twenty-four individuals (13 patients: ages 7-21, and 11 parents) completed the study. Conversations generated by the photographs covered topics in more depth than a routine clinical encounter leading to more opportunities for reflection by patients and their family. The photographs generated conversations on four emergent themes: (a) sensemaking; (b) transitions and agency; (c) social interactions and community engagement; and (d) barriers and obstacles. CONCLUSIONS: Photograph elicitation generated a rich dataset describing a range of pediatric renal transplant experiences helping physicians gain a rich and nuanced understanding of the daily lives and experiences of their patients outside the clinical setting. Photograph elicitation, as a clinical intervention, may provide new opportunities to address previously unrecognized modifiable risk factors, improving graft survival and health-related quality of life.

Being (In)Visible: Privacy, Transparency, and Disclosure in the Self-Management of Bipolar Disorder.

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.

Creating synthetic patient data to support the design and evaluation of novel health information technology.

To ensure that new health information technology supports its intended users, researchers and developers need to follow human-centered methods during all stages of the software development lifecycle, including early stage evaluations. These evaluations need to include realistic testing scenarios to ensure that they provide valuable and accurate feedback to system developers. However, obtaining realistic patient data to support these evaluations has many challenges, including the risk of re-identifying anonymized patients as well as the costs associated with connecting test systems with production ready clinical databases. Here we present a novel five-step process to create highly structured and realistic synthetic patient data to support the evaluation and comparison of early to middle stage health information technology prototypes. We applied this method to evaluate and compare three novel health information technology prototypes designed to support clinicians during the identification of high-priority patients when answering the question: "What patient should I see first?" Our novel approach fills an important gap in the evaluation of health information technology and assists designers in creating high-quality software that best supports its end users.

MoodLight: Exploring Personal and Social Implications of Ambient Display of Biosensor Data.

MoodLight is an interactive ambient lighting system that responds to biosensor input related to an individual's current level of arousal. Changes in levels of arousal correspond to fluctuations in the color of light provided by the system, altering the immediate environment in ways intimately related to the user's private internal state. We use this intervention to explore personal and social implications of the ambient display of biosensor data. This study provides greater understanding of the ways in which the representations of personal informatics, with a focus on ambient feedback, influence our perceptions of ourselves and those around us.