Centering Lived Experience in Developing Digital Interventions for Suicide and Self-injurious Behaviors: User-Centered Design Approach

Kruzan, Kaylee Payne; Meyerhoff, Jonah; Biernesser, Candice; Goldstein, Tina R.; Reddy, Madhu; Mohr, David C.

doi:10.2196/31367

Cited by 18 publications

(15 citation statements)

References 60 publications

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“…Of the 33 studies, 6 (18%) involved individuals with lived experience [ 14 , 58 , 62 , 66 , 68 , 70 ], 23 (70%) involved service users [ 6 , 43 - 45 , 47 - 50 , 52 - 55 , 57 , 59 - 61 , 63 - 65 , 67 , 69 , 72 , 73 ], and 4 (12%) involved both [ 46 , 51 , 56 , 71 ]. A total of 18 (55%) studies of the 33 studies included adult participants [ 43 - 47 , 49 - 51 , 54 , 55 , 58 , 60 - 65 , 71 , 72 ], 6 (18%) studies described their participants as young people [ 6 , 52 , 53 , 56 , 59 , 70 ], 3 (9%) studies described their participants as adolescents [ 45 , 68 , 73 ], and 6 (18%) did not specify the age group of their participants [ 14 , 48 , 57 , 66 , 67 , 69 ].…”

Section: Resultsmentioning

confidence: 99%

The Involvement of Service Users and People With Lived Experience in Mental Health Care Innovation Through Design: Systematic Review

Veldmeijer¹,

Terlouw²,

Os³

et al. 2023

JMIR Ment Health

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Background Mental health care faces challenges that not only necessitate innovation but also require the involvement of service users and people with lived experience in developing and evaluating mental health care services. As the development of digital interventions is becoming more prevalent, design approaches are increasingly finding their way into mental health. There is evidence that these approaches can successfully integrate user experience into mental health services. However, there is no clear overview of the studies conducted and the lessons learned concerning the involvement of service users and people with lived experience. Objective In this systematic review, we aimed to provide an overview of the involvement of service users and people with lived experience in mental health care services through design approaches and to synthesize the advantages of design approaches in mental health care. Methods The following 5 databases were searched for relevant abstracts: PsycINFO, PubMed, Web of Science, Scopus, and Embase. In addition, 2 health design journal archives, Design for Health and The Journal of Health Design, were searched. To categorize the results, we collected the reported added value from the included articles and conducted a thematic synthesis in which the themes were developed from the retrieved data. The themes were discussed, revised, and checked until saturation was achieved. Results We included and categorized 33 papers. Most studies involved service users, primarily adults, and used various design approaches. Most of these studies aimed to design or evaluate digital interventions. Service users and people with lived experience were involved in different roles but never as decision makers. Studies that used co-design approaches exhibited the highest levels of involvement. Various added values were reported, including tailoring and testing interventions and digital interventions, improving engagement and collaboration, gathering the needs of stakeholders, and empowering participants as resourceful actors. The challenges reported were maintaining participants’ continued participation throughout the study, managing the iterative nature of design, providing a safe space, balancing insights from design and medical science, and navigating design processes in medical environments. Conclusions This systematic review provides an overview of the studies that used design approaches to involve service users and people with lived experience in mental health care innovation. Design approaches have advantages in mental health care innovation, offering added value and having manageable challenges. Future studies using design approaches in mental health care should involve participants as partners and decision makers and report on collaboration in a systematic and clear manner.

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Section: Resultsmentioning

confidence: 99%

The Involvement of Service Users and People With Lived Experience in Mental Health Care Innovation Through Design: Systematic Review

Veldmeijer¹,

Terlouw²,

Os³

et al. 2023

JMIR Ment Health

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“…However, few studies have applied UCD for suicide interventions; many published studies of UCD in mental health to date have focused on lower acuity concerns such as depression and anxiety [ 33 ]. Our goal was to center on lived experience [ 34 ] and patient autonomy in intervention development, for example, by offering choices where possible without overwhelming the patient in crisis. The prototypes demonstrated good usability and acceptability among ED patients with suicide risk, with ratings improving across the iterative cycles.…”

Section: Discussionmentioning

confidence: 99%

ReachCare Mobile Apps for Patients Experiencing Suicidality in the Emergency Department: Development and Usability Testing Using Mixed Methods

Larkin¹,

Djamasbi²,

Boudreaux³

et al. 2023

JMIR Form Res

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Background Many individuals with suicide risk present to acute care settings such as emergency departments (EDs). However, staffing and time constraints mean that many EDs are not well equipped to deliver evidence-based interventions for patients experiencing suicidality. An existing intervention initiated in the ED for patients with suicide risk (Emergency Department Safety Assessment and Follow-up Evaluation [ED-SAFE]) has been found to be effective but faces trenchant barriers for widespread adoption. Objective On the basis of the ED-SAFE intervention, we aimed to develop 2 apps for patients with suicide risk: a web app guiding patients through safety planning in the ED (ED app) and a smartphone app providing patients components of the ED-SAFE program on their phones after discharge (patient app). We then tested the usability of these apps with patients presenting to the ED with suicide risk. Methods Using a user-centered design framework, we first developed user personas to explore the needs and characteristics of patients who are at risk for suicide using inputs from clinicians (n=3) and suicidologists (n=4). Next, we validated these personas during interviews with individuals with lived experience of suicidality (n=6) and used them to inform our application designs. We field-tested the apps with ED patients presenting with suicide risk (n=14) in 2 iterative cycles to assess their usability and engagement using a mixed methods approach. We also rated the quality and fidelity of the safety plans created. Results We developed 2 interoperable and complementary apps. The first is a web app designed for use on a tablet device during ED admission that guides the patient by creating a safety plan using a chatbot-style interface. The second is a smartphone app for use after discharge and allows the patient to view, edit, and share their completed safety plan; access self-care education, helplines, and behavioral health referrals; and track follow-up appointments with the study clinician. The initial prototype usability testing (n=9) demonstrated satisfactory scores (ED app System Usability Scale [SUS], mean 78.6/100, SD 24.1; User Engagement Scale, mean 3.74/5, SD 0.72; patient app SUS, mean 81.7/100, SD 20.1). After refining the apps based on participant feedback, the second cycle testing (n=5) showed improvement (ED app SUS, mean 90.5/100, SD 9.9; User Engagement Scale, mean 4.07/5, SD 0.36; patient app SUS, mean 97.0/100, SD 1.9). The quality ratings for completed safety plans were satisfactory (Safety Planning Intervention Scoring Algorithm-Brief, mean 27.4, SD 3.4). Conclusions By adopting a user-centered approach and creating personas to guide development, we were able to create apps for ED patients with suicide risk and obtain satisfactory usability, engagement, and quality scores. Developing digital health tools based on user-centered design principles that deliver evidence-based intervention components may help overcome trenchant implementation barriers in challenging health care settings.

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“…The intervention development followed a user-centered design process and involved 3 iterative steps: elicitation, design, and usability testing, as outlined by Kruzan et al [ 21 ]. In the elicitation phase, we drew on multiple data sources to inform our understanding of end user needs, preferences, and requirements.…”

Section: Methodsmentioning

confidence: 99%

Web-Based Cognitive Behavioral Therapy for Depression Among Homebound Older Adults: Development and Usability Study

Xiang,

Kayser,

Ash

et al. 2023

JMIR Aging

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Background Homebound older adults are a high-risk group for depression. However, many of them face barriers to accessing evidence-supported mental health treatments. Digital mental health interventions can potentially improve treatment access, but few web-based interventions are explicitly tailored for depression in older adults. Objective This paper describes the development process of Empower@Home, a web-delivered intervention for depression in homebound older adults that is based on cognitive behavioral therapy, and reports on the outcomes of usability studies. Methods Empower@Home was developed in collaboration with community agencies, stakeholders, and older adults, guided by user-centered design principles. User needs were assessed through secondary data analysis, demographic and health profiles from administrative data, and interviews and surveys of community partners. A comparative usability evaluation was conducted with 10 older adults to assess the usability of Empower@Home compared to 2 similar programs. Field testing was conducted with 4 end users to detect additional usability issues. Results Feedback and recommendations from community partners heavily influenced the content and design of Empower@Home. The intervention consists of 9 sessions, including psychoeducation and an introduction to cognitive behavioral therapy skills and tools through short video clips, in-session exercises, an animated storyline, and weekly out-of-session home practice. A printed workbook accompanies the web-based lessons. In comparative usability testing (N=10), Empower@Home received a System Usability Scale score of 78 (SD 7.4), which was significantly higher than the 2 comparator programs (t9=3.28; P=.005 and t9=2.78; P=.011). Most participants, 80% (n=8), preferred Empower@Home over the comparators. In the longitudinal field test (n=4), all participants reported liking the program procedures and feeling confident in performing program-related tasks. The single-subject line graph showed an overall downward trend in their depression scores over time, offering an encouraging indication of the intervention’s potential effects. Conclusions Collaboration with community stakeholders and careful consideration of potential implementation issues during the design process can result in more usable, engaging, and effective digital mental health interventions.

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Centering Lived Experience in Developing Digital Interventions for Suicide and Self-injurious Behaviors: User-Centered Design Approach

Cited by 18 publications

References 60 publications

The Involvement of Service Users and People With Lived Experience in Mental Health Care Innovation Through Design: Systematic Review

The Involvement of Service Users and People With Lived Experience in Mental Health Care Innovation Through Design: Systematic Review

ReachCare Mobile Apps for Patients Experiencing Suicidality in the Emergency Department: Development and Usability Testing Using Mixed Methods

Web-Based Cognitive Behavioral Therapy for Depression Among Homebound Older Adults: Development and Usability Study

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