Iterative Participatory Design Research Articles

Developing a Motion Sensor-Based Game to Support Frozen Shoulder Rehabilitation in Older Adults through a Participatory Design Approach.

Objective: Although some serious games have been developed for physical therapy, little work has been conducted through a participatory design approach. Therefore, a game prototype was developed, which involved related stakeholders in the design process. Materials and Methods: The iterative participatory design process was adopted with the input of 18 patients with frozen shoulder symptoms, 4 health professionals, 2 game designers, and 5 researchers in an iterative process to design, test, and evaluate the game prototype. In total, 17 patients participated in the interviews to explore their needs and desires for a serious game. The health professionals participated in the interviews to understand the medical requirement and experience pertaining to frozen shoulder and were included in the workshop to give feedback on the game prototype. At the conclusion of the iterative design process, a Kinect-based prototype game with three levels was used for a case study with one patient who was diagnosed with frozen shoulder and has been receiving medical treatment in the hospital. Results: Based on the outcomes derived from data collected among diverse stakeholders, the prototype game underwent iterative development by the team and was assessed by a participant with frozen shoulder symptoms. Findings revealed that the participant demonstrated enhanced shoulder mobility and a reduction in pain intensity, despite the lack of significant improvement for health-related quality of life. Nevertheless, the participant reported a positive experience with the prototype game. Conclusion: This study underscores the importance of involving diverse stakeholders in the development process to create more effective and user-centric serious games for rehabilitation. The participatory approach, exemplified by the prototype game, demonstrates potential improvements in both user experience and overall effectiveness during the rehabilitation process.

An Iterative Participatory Design Approach to Develop Collaborative Augmented Reality Activities for Older Adults in Long-Term Care Facilities.

Over four million older adults living in long-term care (LTC) communities experience loneliness, adversely impacting their health. Increased contact with friends and family is an evidence-based intervention to reduce loneliness, but in-person visits are not always possible. Augmented Reality (AR)-based telepresence activities can offer viable alternatives with increased immersion and presence compared to video calls. However, its feasibility as an interaction technology for older adults is not known. In this paper, we detail the design of two dyadic collaborative AR activities that accommodate diminished physical and cognitive abilities of older adults. The findings include a general design framework based on an iterative participatory design focusing on preferred activities, modes of interaction, and overall AR experience of eight older adults, two family members, and five LTC staff. Results demonstrate the potential of collaborative AR as an effective means of interaction for older adults with their family, if designed to cater to their needs.

Simulation-based development: shaping clinical procedures for extra-uterine life support technology

BackgroundResearch into Artificial Placenta and Artificial Womb (APAW) technology for extremely premature infants (born < 28 weeks of gestation) is currently being conducted in animal studies and shows promising results. Because of the unprecedented nature of a potential treatment and the high-risk and low incidence of occurrence, translation to the human condition is a complex task. Consequently, the obstetric procedure, the act of transferring the infant from the pregnant woman to the APAW system, has not yet been established for human patients. The use of simulation-based user-centered development allows for a safe environment in which protocols and devices can be conceptualized and tested. Our aim is to use participatory design principles in a simulation context, to gain and integrate the user perspectives in the early design phase of a protocol for this novel procedure.MethodsSimulation protocols and prototypes were developed using an iterative participatory design approach; usability testing, including general and task-specific feedback, was obtained from participants with clinical expertise from a range of disciplines. The procedure made use of fetal and maternal manikins and included animations and protocol task cards.ResultsPhysical simulation with the active participation of clinicians led to the diffusion of tacit knowledge and an iteratively formed shared understanding of the requirements and values that needed to be implemented in the procedure. At each sequel, participant input was translated into simulation protocols and design adjustments.ConclusionThis work demonstrates that simulation-based participatory design can aid in shaping the future of clinical procedure and product development and rehearsing future implementation with healthcare professionals.

Head-Mounted Augmented Reality Support for Assemblers of Wooden Trusses

Wooden-house assembly is an area where still a big part of the work is done manually. In this case study, pairs of operators compose large wooden pieces together based on paper-print instructions complemented by visual guidance in the shape of laser marks projected from lasers mounted in the ceiling, based on Computer-aided design (CAD) data. Augmented Reality (AR) head-mounted displays (HMD) offer a unique platform for providing instructions and additional information superimposed in the work environment and thus can provide guidance in a cognitively ergonomic way. A particular advantage compared to other computing platforms is that the operators have free hands and can perform the manual work and follow guidance simultaneously. We present an evaluation of a prototype that dynamically transforms a CAD data file with design and measurements of wooden trusses to be manufactured, into an AR-based guidance system developed in Unity for Microsoft HoloLens 2 devices. We used an iterative participatory design process for prototyping and think-aloud protocol combined with observations for evaluation, involving professional assemblers in different stages of the process. Participants found the solution to potentially save time in their everyday work and simplify the task by offering increased visibility of the marks compared to the existing laser projection. Large-scale deployment of the system is still facing design challenges of which some are also discussed in the paper.

Adaptive Text Messaging for Postpartum Risky Drinking: Conceptual Model and Protocol for an Ecological Momentary Assessment Study.

BackgroundRisky drinking is prevalent among women of childbearing age. Although many women reduce their drinking during pregnancy, more than half return to prepregnancy levels during the early postpartum period. Risky drinking in new mothers may be associated with negative child and maternal health outcomes; however, new mothers are unlikely to seek treatment for risky drinking because of stigma and fear of child protective service involvement. SMS text messaging is a promising approach for reaching non–treatment-seeking new mothers at risk because of risky drinking. SMS text messaging interventions (TMIs) are empirically supported for alcohol use, but a tailored intervention for new mothers does not exist. This study aims to fill this gap by developing a just-in-time adaptive TMI for postpartum risky drinking.ObjectiveThe objectives of this paper are to present a preliminary conceptual model of postpartum risky drinking and describe the protocol for conducting an ecological momentary assessment (EMA) study with new mothers to inform the refinement of the conceptual model and development of the TMI.MethodsThis paper presents a preliminary conceptual model of postpartum risky drinking based on the motivational model of alcohol use, social cognitive theory, and temporal self-regulation theory. The model proposes three primary intervention targets: motivation, self-efficacy, and self-regulation. Theoretical and empirical literature in support of the conceptual model is described. The paper also describes procedures for a study that will collect EMA data from 30 participants recruited via social media and the perinatal Central Intake system of New Jersey. Following the baseline assessment, EMA surveys will be sent 5 times per day for 14 days. The assessment instruments and data analysis procedures are described.ResultsRecruitment is scheduled to begin in January 2022 and is anticipated to conclude in March 2022. Study results are estimated to be published in July 2022.ConclusionsThe study findings will enhance our understanding of daily and momentary fluctuations in risk and protective factors for risky drinking during the early postpartum period. The findings will be used to refine the conceptual model and inform the development of the TMI. The next steps for this work include the development of intervention components via an iterative participatory design process and testing of the resulting intervention in a pilot microrandomized trial.International Registered Report Identifier (IRRID)PRR1-10.2196/36849

Development of a Web-Based System to Report Medication-Related Adverse Effects: Design and Usability Study.

BackgroundMedicine use is the most common intervention in health care. The frequency with which medicines are used means medication-related problems are very common. One common type of medication-related problems is adverse drug events, which are unintended and harmful effects associated with use of medicines. Reporting of adverse drug events to regulatory authorities is important for evaluation of safety of medicines; however, these adverse effects are frequently unreported due to various factors, including lack of consumer-friendly reporting tools.ObjectiveThe aim of this study was to develop a user-friendly digital tool for consumers to report medication-related adverse effects.MethodsThe project consisted of 3 parts: (1) content development, including a systematic literature search; (2) iterative system development; and (3) usability testing. The project was guided by participatory design principles, which suggest involving key stakeholders throughout the design process. The first 2 versions were developed as a mobile app and were tested with end users in 2 workshops. The third version was developed as a web application and was tested with consumers who were taking regular medicines. Consumers were asked to complete a modified version of the mHealth app usability questionnaire (MAUQ), an 18-item questionnaire with each item scored using a 7-point Likert scale ranging from 0 (strongly disagree) to 7 (strongly agree). The MAUQ assessed 3 subscales including ease of use (5 items), interface and satisfaction (7 items), and usefulness (6 items). Continuous variables were reported as mean (SD) values, whereas categorical variables were presented as frequencies (percentages). Data analysis was conducted in Microsoft Excel.ResultsThe content for the system was based on a systematic literature search and short-listing of questions, followed by feedback from project team members and consumers. Feedback from consumers in the 2 workshops were incorporated to improve the functionality, visual design, and stability of the third (current) version. The third version of the system was tested with 26 consumers. A total of 79% (N=307/390) of all responses on the MAUQ were scored 6 or 7, indicating that users generally strongly agree with the usability of the system. When looking at the individual domains, the system had an average score of 6.3 (SD 0.9) for “ease of use,” 6.3 (SD 0.8) for “interface and satisfaction,” and 5.2 (SD 1.4) for “usefulness.”ConclusionsThe web-based system for medicine adverse effects reporting is a user-friendly tool developed using an iterative participatory design approach. Future research includes further improving the system, particularly the usefulness of the system, as well as testing the scalability and performance of the system in practice.

Infographic Development for the Success in College after Concussion with Effective Student Supports (SUCCESS) Peer Mentoring Program

Research Objectives To develop educational infographic handouts for a peer mentoring program for students returning to college after concussion. Design Iterative participatory design. Setting Outpatient specialty clinic. Participants College students with history of concussion, stakeholders, and concussion experts. Interventions Handouts were developed in three phases using the iterative approach recommended by Patient-Centered Outcomes Research Institute (PCORI). In phase 1, key topics were derived from experts, research literature, and focus groups with college students with concussion. Findings were synthesized and visual design was led by current college students. In phase 2, educational handouts were reviewed and revised by a panel of stakeholders (n=10). In phase 3, educational handouts were piloted with college students with history of concussion who were trained as peer mentors (n=12). Main Outcome Measures Survey and focus group feedback on accessibility, clarity, appropriateness for college-age students, and usefulness of handouts. Results Phase 1 resulted in development of 21 educational infographic handouts. Phase 2 resulted in adjustment to visual formatting (increased font sizes and color contrast) and development of two additional handouts. In phase 3, mentors recommended seven more handouts, resulting in 30 total handouts. Stakeholders and mentor ratings were compared to ensure acceptability for the target population. On a 5-point scale, mentors provided similar ratings as the advisory board regarding the infographic clarity (M=4.91), use of terminology (M=5), content (M=4.91), and visual presentation (M=4.36). Mentors found that the infographics exceeded their expectations (M=3.9), and that they were likely to use them with mentees (M=4.6). Conclusions The three phases of handout development generated educational materials appropriate for a peer mentoring program for college students with concussion. The infographic handouts supported the overall aim and goals for the broader research project. Author(s) Disclosures N/A. To develop educational infographic handouts for a peer mentoring program for students returning to college after concussion. Iterative participatory design. Outpatient specialty clinic. College students with history of concussion, stakeholders, and concussion experts. Handouts were developed in three phases using the iterative approach recommended by Patient-Centered Outcomes Research Institute (PCORI). In phase 1, key topics were derived from experts, research literature, and focus groups with college students with concussion. Findings were synthesized and visual design was led by current college students. In phase 2, educational handouts were reviewed and revised by a panel of stakeholders (n=10). In phase 3, educational handouts were piloted with college students with history of concussion who were trained as peer mentors (n=12). Survey and focus group feedback on accessibility, clarity, appropriateness for college-age students, and usefulness of handouts. Phase 1 resulted in development of 21 educational infographic handouts. Phase 2 resulted in adjustment to visual formatting (increased font sizes and color contrast) and development of two additional handouts. In phase 3, mentors recommended seven more handouts, resulting in 30 total handouts. Stakeholders and mentor ratings were compared to ensure acceptability for the target population. On a 5-point scale, mentors provided similar ratings as the advisory board regarding the infographic clarity (M=4.91), use of terminology (M=5), content (M=4.91), and visual presentation (M=4.36). Mentors found that the infographics exceeded their expectations (M=3.9), and that they were likely to use them with mentees (M=4.6). The three phases of handout development generated educational materials appropriate for a peer mentoring program for college students with concussion. The infographic handouts supported the overall aim and goals for the broader research project.

Co-design and qualitative validation of animated assessment item content for a child-reported digital distress screener

PurposeThe Interactive Child Distress Screener (ICDS) is a novel, digital screening tool that is currently under development and aims to broadly assess self-reported emotional and behavioural distress in children aged five to 11 years. This study implemented a generative participatory codesign and iterative refinement process to qualitatively validate the content of 30 animated assessment items developed for the ICDS by assessing their acceptability and accuracy from the child's perspective. MethodsThe participants (N = 62) were five to 11-year-old children. Individual interviews were conducted with each child to determine acceptability and validity of animated items and facilitate the co-design refinement process of the animated assessment items. ResultsTwenty-two out of 30 (73%) items met ≥80% satisfaction and accuracy consensus in their original format, six items (20%) required one round of refinement before meeting consensus, and two items (7%) required two rounds of refinements. Combined acceptability of animated items was high, ranging from 4.1 to 5 out of 5 across all items. ConclusionParticipants were able to accurately identify and understand socio-emotional and behavioural constructs when depicted as animated items. Acceptability was high, even in first iterations when accuracy of understanding required refinement. This study highlighted the importance and benefits of iterative participatory design methodology in ensuring assessment items developed for children are understood, accepted and likely to be effective in obtaining accurate self-report.

Novel Computational Linguistic Measures, Dialogue System and the Development of SOPHIE: Standardized Online Patient for Healthcare Interaction Education

In this article, we describe the iterative participatory design of SOPHIE, an online virtual patient for feedback-based practice of sensitive patient-physician conversations, and discuss an initial qualitative evaluation of the system by professional end users. The design of SOPHIE was motivated from a computational linguistic analysis of the transcripts of 383 patient-physician conversations from an essential office visit of late stage cancer patients with their oncologists. We developed methods for the automatic detection of two behavioral paradigms, lecturing and positive language usage patterns (sentiment trajectory of conversation), that are shown to be significantly associated with patient prognosis understanding. These automated metrics associated with effective communication were incorporated into SOPHIE, and a pilot user study identified that SOPHIE was favorably reviewed by a user group of practicing physicians.

Development of a Web-Based Acceptance and Commitment Therapy Intervention to Support Lifestyle Behavior Change and Well-Being in Health Care Staff: Participatory Design Study.

BackgroundPositive emotional well-being is associated with healthier lifestyle choices and overall health function, whereas poor mental health is associated with significant economic and psychological costs. Thus, the development of effective interventions that improve emotional well-being is crucial to address the worldwide burden of disease.ObjectiveThis study aims to develop a web-based emotional well-being intervention for use by health care staff using participatory design to consider adherence and engagement from a user perspective.MethodsA 3-staged iterative participatory design process was followed, including multiple stakeholders: researchers, computer scientists, mental health experts, and health care staff. Stage 1 used document analyses, direct observation, and welcome interviews; stage 2 used focus group discussions, rapid prototyping, and usability tasks; and stage 3 evaluated a high-fidelity prototype.ResultsDifferent health care staff (N=38) participated during a sustained period. A structured, sequential, automated, 12-week, web-based emotional well-being intervention based on acceptance and commitment therapy was developed. Freely navigated psychoeducational resources were also included.ConclusionsThe iterative and collaborative participatory design process successfully met its objectives. It generated an in-depth understanding of well-being within the workplace and identified barriers to access. The 3-staged process ensured that participants had the opportunity to explore and articulate criteria relevant to their roles over time and reflect on decisions made at each stage.

Deaf and hard of hearing awareness training: A mentor-led workshop.

People who are deaf and hard of hearing (DHH) comprise a significant and increasing proportion of the population. They face many barriers to accessing good health care and major communication challenges with health professionals. There is evidence that DHH awareness training for health professionals needs improvement but little information about how such training is incorporated into curricula. The research question we address is how to develop and deliver an effective workshop for students led by people who, by definition, have barriers to communication due to hearing loss and deafness. Workshop development was initiated and led by a medical student as a course project, in collaboration with DHH people, other students, and university faculty in an iterative participatory educational design process, supported by a community-based organization that provides programs and services for DHH people. Development resulted in a pilot workshop suitable for all health professional students. Three workshops were attended by a total of 49 students from 10 different health disciplines. Workshops were highly rated. Thematic analysis of post-workshop reflections written by occupational therapy students showed learning in the domains of knowledge, skills (practical tips and techniques), and attitudes (assumptions, motivation, reflection). Partnership with a community organization makes it feasible for DHH people to design and facilitate workshops. The organization can provide the necessary environment, technology, and support, and identify people with lived experience to be workshop mentors. Workshops help make students more aware of the needs of DHH people and motivate them to provide better care.

PuzzleWalk: A theory-driven iterative design inquiry of a mobile game for promoting physical activity in adults with autism spectrum disorder.

Primary symptoms of adults with autism spectrum disorder (ASD), such as pervasive social deficits in social interaction and communication, cause adults with ASD to adopt a sedentary lifestyle. Meanwhile, gamified and behavioral theory-based interventions have been shown to improve physical activity in a fun and unobtrusive way. In this paper, we describe the iterative design inquiry process of PuzzleWalk, a gamified, physical activity-promoting mobile app designed for adults with ASD. We report the design rationales and lessons learned across four user-centered design phases with ASD experts and adults with ASD, including user requirement gathering, iterative participatory design, usability evaluation, and field deployment. The design insights generated from this work could inform future research focusing on designing sociotechnical systems, games, and interventions for people with ASD.

Evaluation of pharmaceutical pictograms by older "turkers": A cross-sectional crowdsourced study.

Well-designed pharmaceutical pictograms may improve patients' understanding of medication instructions. However, the iterative participatory design process required to produce effective pictograms can be costly in terms of money, time, and effort. Crowdsourcing has been applied to bring down the costs of the participatory design process, but the feasibility of using this approach with older adults remains largely unknown. To evaluate the feasibility of using Amazon Mechanical Turk (MTurk), a leading crowdsourcing platform, for participatory pictogram evaluation with older adults (55+) and to evaluate the comprehensibility of USP pictogram, identify common misinterpretations, and explore the relationship between selected participant characteristics and their pictogram comprehension performance. 108 older adults (56.5% female; 57-80 years of age) were recruited via MTurk to complete a cross-sectional online survey that asked them to interpret 15 USP pictograms and answer questions about their health and health literacy. It was feasible to perform pictogram evaluation with older adults on MTurk, as shown by ease of recruitment and high data quality. Of the 15 pictograms tested, seven (46.7%) resulted in a comprehensibility score below the threshold established by the American National Standards Institute (ANSI), eight (53.3%) elicited common misinterpretations, and two (13.3%) resulted in ANSI-defined "critical confusion." Age (P=0.04) was associated with pictogram comprehension performance. Certain issues with the pictogram subtitles emerged during the evaluation. MTurk is a feasible platform for participatory pictogram evaluation, even for a sole target of older adults. The USP should develop a pictogram user manual, redesign pictograms confusing to older adults, and establish policies and procedures to ensure that pictogram subtitles conform to evidence-based best practices and standards for patient-centered written drug information.

Development and Feasibility Testing of a Video Game to Reduce High-Risk Heterosexual Behavior in Spanish-Speaking Latinx Adolescents: Mixed Methods Study.

BackgroundSimilar to broader health disparities, Latinx adolescents have higher rates of high-risk sexual behavior resulting in pregnancy rates that are 2 times higher and sexually transmitted infection rates that are 5 to 8 times higher than non-Hispanic, white adolescents. Novel approaches are needed to reduce high-risk sexual behavior among Spanish-speaking Latinx adolescents who represent the fastest-growing group of US immigrants.ObjectiveThis study aimed to partner with Spanish-speaking Latinx adolescents in a participatory design process to develop and test a Spanish-language video game intervention to decrease high-risk heterosexual behavior.MethodsThis is an iterative, two-phase, mixed methods study. In phase 1, we conducted focus groups with Spanish-speaking Latinx adolescents to elicit feedback on the content and format of an existing English-language video game. Feedback was then incorporated into an expanded and culturally adapted Spanish-language video game. In phase 2, we pilot tested the feasibility, acceptability, and preliminary efficacy of the new Spanish-language video game intervention by measuring known antecedents to sexual behavior (intentions, self-efficacy, risk perception, and knowledge) assessed at enrollment and 12-week follow-up. We applied a thematic analysis to examine focus group feedback and a bivariate analysis to analyze pre- and postquantitative data.ResultsIn phase 1, 15 Spanish-speaking Latinx adolescents provided feedback for further video game development. A Spanish-language video game was then produced and tested in phase 2. We recruited and enrolled 24 Spanish-speaking Latinx adolescents aged 15 to 17 years. Participants played the video game for an average of 4.2 hours during monitored sessions. Pilot testing demonstrated feasibility and acceptability; 65% (3/20) of participants stated that they would play it again, and 65% (3/20) said they would recommend it to friends. Condom-specific knowledge did significantly increase between baseline and follow-up (P=.007). Other variables of sexual behavior antecedents did not differ significantly between baseline and 12-week follow-up.ConclusionsAn iterative participatory design process in partnership with Spanish-speaking adolescents produced an innovative and acceptable Spanish-language video game intervention aimed at decreasing high-risk sexual behavior in adolescents. Pilot testing demonstrated preliminary feasibility and yielded essential information for further video game development.

“We can’t do it on our own!”—Integrating stakeholder and scientific knowledge of future flood risk to inform climate change adaptation planning in a coastal region

Decision-makers face a particular challenge in planning for climate adaptation. The complexity of climate change's likely impacts, such as increased flooding, has widened the scope of information necessary to take action. This is particularly the case in valuable low-lying coastal regions, which host many competing interests, and where there is a growing need to draw from varied fields in the risk-based management of flooding. The rising scrutiny over science's ability to match expectations of policy actors has called for the integration of stakeholder and scientific knowledge domains. Focusing on the Broads — the United Kingdom's largest protected wetland — this study looked to assess future flood risk and consider potential adaptation responses in a collaborative approach. Interviews and surveys with local stakeholders accompanied the development of a hydraulic model in an iterative participatory design, centred on a scientist-stakeholder workshop. Knowledge and perspectives were shared on processes driving risk in the Broads, as well as on the implications of adaptation measures, allowing for their prioritisation. The research outcomes highlight not only the challenges that scientist-stakeholder integrated assessments of future flood risk face, but also their potential to lead to the production of useful information for decision-making.

Development of Pictograms for an Interactive Web Application to Help Hispanic Caregivers Learn About the Functional Stages of Dementia.

Caregivers of persons with dementia need anticipatory guidance about the stages of dementia in order to prepare for the caregiving situations they will face. The study objective was to develop a set of pictograms representing the functional stages of dementia for eventual inclusion in a tailored, educational web application. We used a hybrid iterative participatory design process. A graphic designer prepared prototypes in a flat, minimalistic style. These were then culled and refined based on feedback from 16 Hispanic caregivers in six design sessions in English and Spanish. The resulting 19 pictograms representing the functional stages and substages of dementia were acceptable to and easily comprehended by participants. Short, plain-language captions support comprehension and aid discrimination between similar scenarios. Our participants preferred candid depictions of all aspects of dementia, including bodily functions, but acceptability may vary by population so further testing is warranted prior to deployment with a new population.

Design and Comprehension Testing of Tailored Asthma Control Infographics for Adults with Persistent Asthma.

Adherence to daily inhaled corticosteroid medication is important for asthma control but low health literacy is a barrier to comprehension of control status and may contribute to medication nonadherence. Infographics tailored with patients' own data can support comprehension of health status, but these have not been applied to asthma successfully. This two-phased study developed and tested tailored infographics of (1) scores on the Asthma Control Questionnaire (ACQ), a self-report measure of symptom burden, and (2) pulmonary function test (PFT) results. The infographics are intended for use as communication and adherence-promotion tools in clinical interactions. For both phases, participants (18+ years, English- or Spanish-speaking, persistent asthma) were recruited through two primary care clinics. In Phase I, we used a hybrid iterative participatory design process to refine prototype designs. In Phase II, we conducted individual comprehension assessment interviews with the finalized designs. Infographics were hand-tailored for each participant using their ACQ score and PFT results collected at the start of the interview. Two independent raters scored interview transcripts for gist and verbatim comprehension based on a predetermined rubric. The five Phase I design sessions led to final prototypes that participants (n = 21) considered appealing and easy to comprehend. All Phase II participants (n = 10) demonstrated complete gist and verbatim comprehension. Participants reacted favorably to receiving their information via infographics and expressed intentions to engage in self-management behaviors (e.g., medication adherence, smoking cessation, weight loss, and review of their care plan) in response to the information. This study provides preliminary evidence that infographics can support comprehension of asthma control status and promote self-management intentions among adults with persistent asthma. Infographics can be programmed into electronic health records and/or standalone applications to allow for instant tailoring at the point of care.

Helping Hispanic Family Caregivers of Persons With Dementia "Get the Picture" About Health Status Through Tailored Infographics.

Background and ObjectivesCaregivers need to understand their health status and the disabilities of the care recipient to engage in effective health management. Infographics tailored with personal health data are a promising approach to facilitating comprehension, particularly for individuals with low health literacy/limited English proficiency. Such approaches may be especially important for dementia caregivers given the high care burden.Research Design and MethodsGuided by the Health Belief Model and the Data-Frame Theory of Sensemaking, we conducted iterative participatory design sessions with Hispanic family caregivers (N = 16) of persons with dementia. We created multiple prototype infographic designs to display scores on validated instruments of topics such as caregiving burden, overall health, and psychological distress. We retained and refined designs participants judged to be easily comprehensible. Analysis focused on identifying the graphical elements that contributed to the comprehensibility of designs and on evaluating participants’ reactions to the designs.ResultsSuccessful infographics used intuitive scaling consistent with caregivers’ perspective of dementia as inevitable decline. Participants reacted to infographics by describing the self-management actions they would take to address the health issue at hand.Discussion and ImplicationsTailored infographics supported caregivers’ comprehension of their health status and served as cues to engaging in self-management. As such, they should be presented in the context of informational support that can facilitate selection of appropriate next steps. This can mitigate the potential mental and physical health consequences of caregiving and enable caregivers to continue to care for their relatives with dementia with less damage to their own well-being.

Prototyping the Automated Food Imaging and Nutrient Intake Tracking System: Modified Participatory Iterative Design Sprint.

BackgroundA total of 45% of older adults living in long-term care (LTC) have some form of malnutrition. Several methods of tracking food and fluid intake exist, but they are limited in terms of their accuracy and ease of application. An easy-to-use, objective, accurate, and comprehensive food intake system designed with LTC in mind may provide additional insights regarding nutritional support systems and nutritional interventions.ObjectiveThe aim of this study was to conduct a multistage participatory iterative design sprint of a Goldilocks quality horizontal prototype for the Automated Food Imaging and Nutrient Intake Tracking (AFINI-T) system. Specific design objectives included the following: (1) identify practice-relevant problems and solutions through user-centered participatory design, (2) mitigate feasibility-related barriers to uptake, and (3) employ user-centered technology development.MethodsA 6-stage iterative participatory design sprint was developed and executed. A total of 38 participants and advisors representing 15 distinct roles (eg, personal support worker, nurse, and dietitian) were engaged in the design sprint. Subjective workload (Raw Task Load Index), subjective usability scales, and a modified Ravden checklist were used to assess project advisors’ perceptions of the AFINI-T system prototype compared with the current method of food and fluid intake charting.ResultsThe top priorities for this system were identified as the following: ease of use, high accuracy, system reliability, ease of maintenance, and requirement of integrating with the current PointClickCare system. Data from project advisors informed design decisions leading to a Goldilocks quality horizontal prototype of the AFINI-T system. Compared with the current food and fluid intake charting system, AFINI-T was perceived to have the following: less time demands (t10.8=4.89; P<.001), less effort (t13.5=5.55; P<.001), and less frustration (t13.0=3.80; P=.002). Usability ratings of the AFINI-T prototype were high, with a subjective usability score mean of 89.2 and the highest ratings on a modified Ravden usability checklist of “very satisfactory” for 7 out of 8 sections.ConclusionsThe AFINI-T concept system appears to have good practice relevance as a tool for an intelligent food and fluid intake tracking system in LTC. The AFINI-T concept system may provide improvement over the current system, and advisors are keen to try the AFINI-T system. This research gives tangible examples of how the sprint method can be adapted and applied to the development of novel needs-based application-driven technology.

A digital self-management intervention for adults with type 2 diabetes: Combining theory, data and participatory design to develop HeLP-Diabetes

BackgroundDigital health interventions have potential to contribute to better health outcomes, better healthcare and lower costs. However, evidence for their effectiveness is variable. The development and content of digital health interventions are often not described in enough detail to enable others to replicate the research or improve on previous interventions. This has led to a call for transparent reporting of intervention content and development. PurposeTo describe the development process and content of a digital self-management intervention for people with type 2 diabetes (HeLP-Diabetes) that has been found to achieve its target clinical outcome, the reduction of HbA1c, a measure of glycaemic control. MethodWe synthesised theory, data from existing research evidence and international guidelines, and new qualitative data from target users to identify the determinants of self-management and the content to be included in HeLP-Diabetes. Using an ongoing iterative participatory design approach the content of the intervention was written, produced, reviewed and changed. ConclusionIt is possible to develop and transparently report self-management programmes for long-term conditions, which reflect current best evidence, theoretical underpinning and user involvement. We intend that reporting the development process and content will inform future digital intervention development.