The miscarriage circle of care: towards leveraging online spaces for social support.

BACKGROUND: Lack of social support during and after miscarriage can greatly affect mental wellbeing. With miscarriages being a common experience, there remains a discrepancy in the social support received after a pregnancy is lost. METHOD: 42 people who had experienced at least one miscarriage took part in an Asynchronous Remote Community (ARC) study. The study involved 16 activities (discussions, creative tasks, and surveys) in two closed, secret Facebook groups over eight weeks. Descriptive statistics were used to analyse quantitative data, and content analysis was used for qualitative data. RESULTS: There were two main miscarriage care networks, formal (health care providers) and informal (friends, family, work colleagues). The formal care network was the most trusted informational support source, while the informal care network was the main source of tangible support. However, often, participants' care networks were unable to provide sufficient informational, emotional, esteem, and network support. Peers who also had experienced miscarriage played a crucial role in addressing these gaps in social support. Technology use varied greatly, with smartphone use as the only common denominator. While there was a range of online support sources, participants tended to focus on only a few, and there was no single common preferred source. DISCUSSION: We propose a Miscarriage Circle of Care Model (MCCM), with peer advisors playing a central role in improving communication channels and social support provision. We show how the MCCM can be used to identify gaps in service provision and opportunities where technology can be leveraged to fill those gaps.

Adopting Diffractive Reading to Advance HCI Research: A Case Study on Technology for Aging.

Researchers in Human-Computer Interaction (HCI) have long developed technologies for older adults. Recently, researchers are engaging in critical reflections of these approaches. IoT for aging in place is one area around which these conflicting discourses have converged, likely in part driven by government and industry interest. This article introduces diffractive analysis as an approach that examines difference to yield new empirical understandings about our methods and the topics we study. We constructed three analyses of a dataset collected at an IoT design workshop and then conducted a diffractive analysis. We present themes from this analysis regarding the ways that participants are inscribed in our research, considerations related to transferability and novelty between work centered on older adults and other work, and insights about methodologies. Our discussion contributes implications for researchers to form teams and account for their roles in research, as well as recommendations how diffractive analysis can support other research agendas.

Postpartum Health Information Seeking Using Mobile Phones: Experiences of Low-Income Mothers.

Objectives To assess low-income mothers' perceptions of their postpartum information needs; describe their information seeking behavior; explore their use of mobile technology to address those needs; and to contribute to the sparse literature on postpartum health and wellness. Methods Exploratory community-based qualitative approach. Interviewees were recruited among clients of community partners and had children aged 48 months and under. A survey assessing demographics was used to identify low-income mothers. 10 low-income mothers were recruited from survey participants to complete in-depth interviews regarding postpartum information needs, information seeking, and technology use. Interviews were transcribed verbatim and coded by three researchers independently. Narratives were analyzed along predetermined (etic) and emergent (emic) categories. Results Establishing breastfeeding and solving breastfeeding problems were central postpartum concerns leading to information seeking. Interviewees reported almost exclusive use of mobile phones to access the Internet. Mobile applications were widely used during pregnancy, but were not valuable postpartum. Face-to-face information from medical professionals was found to be repetitive. Online information seeking was mediated by default mobile phone search engines, and occurred over short, fragmented time periods. College graduates reported searching for authoritative knowledge sources; non-graduates preferred forums. Conclusions for Practice Low-income postpartum women rely on their smartphones to find online infant care and self-care health information. Websites replace pregnancy-related mobile applications and complement face-to-face information. Changes in searching behavior and multitasking mean information must be easily accessible and readily understood. Knowledge of page-rank systems and use of current and emergent social media will allow health-related organizations to better engage with low-income mothers online and promote evidence-based information.

Using a mobile application to self-monitor diet and fluid intake among adults receiving hemodialysis.

Hemodialysis patients have difficulty self-managing a complex dietary and fluid regimen. The purpose of this feasibility study was to pilot test an electronic self-monitoring intervention based on social cognitive theory. During a 6-week intervention, 24 participants self-monitored diet and fluid intake using the Dietary Intake Monitoring Application (DIMA), and 20 participants served as controls by monitoring their activity using the Daily Activity Monitor Application (DAMA). Results from this pilot study suggest the intervention is feasible and acceptable, although few significant effects on outcomes were found in this small sample. The DIMA has potential to facilitate dietary and fluid self-monitoring but requires additional refinement and further testing.

Older adults with multi-morbidity: medication management processes and design implications for personal health applications.

BACKGROUND: Older adults often have multiple chronic problems requiring them to manage complex medication regimens overseen by various clinicians. Personal health applications (PHAs) show promise assisting in medication self-management, but adoption of new computer technologies by this population is challenging. Optimizing the utility of PHAs requires a thorough understanding of older adults' needs, preferences, and practices. OBJECTIVE: The objective of our study was to understand the medication self-management issues faced by older adults and caregivers that can be addressed by an electronic PHA. METHODS: We conducted a qualitative analysis of a series of individual and group semistructured interviews with participants who were identified through purposive sampling. RESULTS: We interviewed 32 adult patients and 2 adult family caregivers. We identified 5 core themes regarding medication self-management challenges: seeking reliable medication information, maintaining autonomy in medication treatment decisions, worrying about taking too many medications, reconciling information discrepancies between allopathic and alternative medical therapies, and tracking and coordinating health information between multiple providers. CONCLUSIONS: This study provides insights into the latent concerns and challenges faced by older adults and caregivers in managing medications. The results suggest that PHAs should have the following features to accommodate the management strategies and information preferences of this population: (1) provide links to authoritative and reliable information on side effects, drug interactions, and other medication-related concerns in a way that is clear, concise, and easy to navigate, (2) facilitate communication between patients and doctors and pharmacists through electronic messaging and health information exchange, and (3) provide patients the ability to selectively disclose medication information to different clinicians.

Two complementary personal medication management applications developed on a common platform: case report.

BACKGROUND: Adverse drug events are a major safety issue in ambulatory care. Improving medication self-management could reduce these adverse events. Researchers have developed medication applications for tethered personal health records (PHRs), but little has been reported about medication applications for interoperable PHRs. OBJECTIVE: Our objective was to develop two complementary personal health applications on a common PHR platform: one to assist children with complex health needs (MyMediHealth), and one to assist older adults in care transitions (Colorado Care Tablet). METHODS: The applications were developed using a user-centered design approach. The two applications shared a common PHR platform based on a service-oriented architecture. MyMediHealth employed Web and mobile phone user interfaces. Colorado Care Tablet employed a Web interface customized for a tablet PC. RESULTS: We created complementary medication management applications tailored to the needs of distinctly different user groups using common components. Challenges were addressed in multiple areas, including how to encode medication identities, how to incorporate knowledge bases for medication images and consumer health information, how to include supplementary dosing information, how to simplify user interfaces for older adults, and how to support mobile devices for children. CONCLUSIONS: These prototypes demonstrate the utility of abstracting PHR data and services (the PHR platform) from applications that can be tailored to meet the needs of diverse patients. Based on the challenges we faced, we provide recommendations on the structure of publicly available knowledge resources and the use of mobile messaging systems for PHR applications.

Studying the Formation of an Older Adult-Led Makerspace.

Makerspaces are being introduced in a wide variety of settings, including community settings such as schools and libraries. Older adults are one group for whom making agendas are being pursued, with envisioned outcomes such as supporting agency and well-being. However, research on making and DIY with older adults typically study individuals who are already engaged in making practices or bring individuals in to a technology environment that has already been created. In this paper, we study the older adult-driven formation of a makerspace in an independent living community. Through an ethnographically-informed approach, we studied the ways that individuals considered appropriate allocation of resources towards a makerspace, scoped activities, evaluated goals, and made trade-ofs. Our analysis is centered around describing the way that this makerspace formed as well as three ways that individuals made sense of the makerspace as the planning unfolded: the openness of a space that promises to cater to interests of the population; the promise of a makerspace to involve more residents in technology, but the need to obscure the technology to make it appealing; and a valuation of the return on investment for limited fnancial and space resources. Our discussion contributes to supporting and studying early adoption of technology by older adults, complicates visions of "making for all," and presents considerations regarding the often under-specifed community of a makerspace.

Colorado Care Tablet: the design of an interoperable Personal Health Application to help older adults with multimorbidity manage their medications.

Medication errors are common and cause serious health issues during care transitions, particularly for older adults with multiple chronic conditions. In this paper, we discuss the design and evaluation of the Colorado Care Tablet, a Personal Health Application (PHA) that helps older adults and their lay caregivers manage their medication regimes during care transitions. We created a PHA that older adults with limited computing experience could easily use by designing an application based on their real world artifacts and workflows.

Expanding Human Computer Interaction Methods to Understand User Needs in the Design Process of Personal Health Systems.

OBJECTIVES: To review innovative human computer interaction methods researchers utilize to identify stakeholders' needs that inform the design of personal health systems outside of clinical environments. METHODS: A selective review of recent literature. RESULTS: Summaries of exemplar needs analysis papers showing how researchers utilize novel methods to surface the lived experiences of users. CONCLUSIONS: The medical informatics community is encouraged to ensure that we are designing health technology for all individuals - including underrepresented and underserved populations - by investigating the complex needs of target users. This paper summarizes the novel ways researchers have explored target populations via social media and engaged populations as part of the design team. Medical informaticians should continue investigating the soundness of these methods by comparing the design outcomes with currently utilized user-centered methods and to report on unintended consequences.

Mind the Gap: Assessing the Disconnect Between Postpartum Health Information Desired and Health Information Received.

INTRODUCTION: Seeking and receiving health information are critical aspects of prenatal and postpartum care; however, many informational sources lack postpartum content. This study explores the gaps between information desired and information received postpartum and identifies the sources women use for health information seeking, with an emphasis on emergent online and mobile phone-based resources. METHODS: Participants were recruited from our community partners' client base for a cross-sectional study. Mothers (n = 77) of a child 48 months or younger completed a survey on health information seeking, health information needs, and technology use. Postpartum health information gaps were defined as topics about which a participant indicated that she wanted information, but did not receive information. Bivariate analyses assessed the association between demographic characteristics, sources of health information used during pregnancy, and postpartum information gaps. RESULTS: Health care providers, Internet-based resources, and mobile applications were common sources of health information during pregnancy. Mental and sexual health were the most common types of postpartum health information gaps. In bivariate analyses, higher income and education were associated with postpartum information gaps in mental health and sexual health, respectively (p < .05). CONCLUSIONS: Postpartum health information gaps were common in this sample, particularly for topics in mental and sexual health. Unexpected associations between higher levels of education and income and postpartum health information gaps were observed in bivariate analyses. Health educators have the opportunity to capitalize on high rates of Internet information seeking by providing health information online. Health care providers must incorporate mental and sexual health into routine postpartum care.

Integrating community-based participatory research and informatics approaches to improve the engagement and health of underserved populations.

OBJECTIVE: We compare 5 health informatics research projects that applied community-based participatory research (CBPR) approaches with the goal of extending existing CBPR principles to address issues specific to health informatics research. MATERIALS AND METHODS: We conducted a cross-case analysis of 5 diverse case studies with 1 common element: integration of CBPR approaches into health informatics research. After reviewing publications and other case-related materials, all coauthors engaged in collaborative discussions focused on CBPR. Researchers mapped each case to an existing CBPR framework, examined each case individually for success factors and barriers, and identified common patterns across cases. RESULTS: Benefits of applying CBPR approaches to health informatics research across the cases included the following: developing more relevant research with wider impact, greater engagement with diverse populations, improved internal validity, more rapid translation of research into action, and the development of people. Challenges of applying CBPR to health informatics research included requirements to develop strong, sustainable academic-community partnerships and mismatches related to cultural and temporal factors. Several technology-related challenges, including needs to define ownership of technology outputs and to build technical capacity with community partners, also emerged from our analysis. Finally, we created several principles that extended an existing CBPR framework to specifically address health informatics research requirements. CONCLUSIONS: Our cross-case analysis yielded valuable insights regarding CBPR implementation in health informatics research and identified valuable lessons useful for future CBPR-based research. The benefits of applying CBPR approaches can be significant, particularly in engaging populations that are typically underserved by health care and in designing patient-facing technology.

Formative evaluation of a mobile liquid portion size estimation interface for people with varying literacy skills.

Chronically ill people, especially those with low literacy skills, often have difficulty estimating portion sizes of liquids to help them stay within their recommended fluid limits. There is a plethora of mobile applications that can help people monitor their nutritional intake but unfortunately these applications require the user to have high literacy and numeracy skills for portion size recording. In this paper, we present two studies in which the low- and the high-fidelity versions of a portion size estimation interface, designed using the cognitive strategies adults employ for portion size estimation during diet recall studies, was evaluated by a chronically ill population with varying literacy skills. The low fidelity interface was evaluated by ten patients who were all able to accurately estimate portion sizes of various liquids with the interface. Eighteen participants did an in situ evaluation of the high-fidelity version incorporated in a diet and fluid monitoring mobile application for 6 weeks. Although the accuracy of the estimation cannot be confirmed in the second study but the participants who actively interacted with the interface showed better health outcomes by the end of the study. Based on these findings, we provide recommendations for designing the next iteration of an accurate and low literacy-accessible liquid portion size estimation mobile interface.

An offline mobile nutrition monitoring intervention for varying-literacy patients receiving hemodialysis: a pilot study examining usage and usability.

OBJECTIVE: Design and evaluation of the dietary intake monitoring application (DIMA) to assist varying-literacy patients receiving hemodialysis to adhere to their prescribed dietary regimen. METHODS: An iterative, user-centered design process informed by Bandura's social cognitive theory was employed to design DIMA--a mobile application that utilizes touch-screen, visual interfaces; barcode scanning; and voice recording to assist varying-literacy patients receiving hemodialysis to self-monitor their diet. A pilot field study was conducted where 18 patients receiving hemodialysis were recruited face-to-face from two dialysis facilities to use DIMA for 6 weeks. Subjects recorded their dietary intake using DIMA and met with research assistants three times each week. All interactions with DIMA were logged. Subjects' interdialytic weight gain was recorded throughout the study. At the end of the study, two face-to-face questionnaires were administered to assess usability and context of use. RESULTS: Subjects were able to use DIMA successfully--12 subjects used DIMA as much or more at the end of the study as they did at the beginning and reported that DIMA helped them change their diet. Subjects had difficulty using the barcode scanner. Viewing past meals was the most used of the reflection mechanisms in DIMA. CONCLUSION: Results suggest that while many design features were useful, some could be improved. In particular, future versions of DIMA will be on a smartphone using a camera for barcode scanning, integrate feedback and past meal reflection into the normal flow of the application, and support visual cues when selecting food items.

The Design of a Mobile Portion Size Estimation Interface for a Low Literacy Population.

Being aware of one's portion sizes is a key component of maintaining a healthy diet, however, it is difficult for individuals especially low literacy populations to estimate their consumption. Nutritional monitoring applications can help but most of them are designed for people with high literacy and numeracy skills. In this paper, we designed and evaluated six portion size estimation interfaces through a Wizard of Oz based experiment using low-fidelity prototypes with ten varying literacy individuals. The interfaces were designed based on the cognitive strategies adults use for reporting portion sizes in diet recall studies. Participants made correct estimates with interfaces designed for liquid and amorphous foods, but had difficulties with those designed for solid foods. Based on these findings, we provide recommendations for designing accurate and low literacy-accessible portion size estimating mobile interfaces.

Designing a personal health application for older adults to manage medications: a comprehensive case study.

Older adults with multiple chronic conditions often go through care transitions where they move between care facilities or providers during their treatment. These transitions are often uncoordinated and can imperil patients by omitted, duplicative, or contradictory care plans. Older adults sometimes feel overwhelmed with the new responsibility of coordinating the care plan with providers and changing their medication regimes. In response, we developed a Lesser General Public License (LGPL) open source, web-based Personal Health Application (PHA) using an iterative participatory design process that provided older adults and their caregivers the ability to manage their personal health information. In this paper, we document the PHA design process from low-fidelity prototypes to high-fidelity prototypes over the course of six user studies. Our findings establish the imperative need for interdisciplinary research and collaboration among all stakeholders to create effective PHAs. We conclude with design guidelines that encourage researchers to gradually increase functionality as users become more proficient.

Merging health literacy with computer technology: self-managing diet and fluid intake among adult hemodialysis patients.

OBJECTIVE: The Dietary Intake Monitoring Application (DIMA) is an electronic dietary self-monitor developed for use on a personal digital assistant (PDA). This paper describes how computer, information, numerical, and visual literacy were considered in development of DIMA. METHODS: An iterative, participatory design approach was used. Forty individuals receiving hemodialysis at an urban inner-city facility, primarily middle-aged and African American, were recruited. RESULTS: Computer literacy was considered by assessing abilities to complete traditional/nontraditional PDA tasks. Information literacy was enhanced by including a Universal-Product-Code (UPC) scanner, picture icons for food with no UPC code, voice recorder, and culturally sensitive food icons. Numerical literacy was enhanced by designing DIMA to compute real-time totals that allowed individuals to see their consumption relative to their dietary prescription. Visual literacy was considered by designing the graphical interface to convey intake data over a 24-h period that could be accurately interpreted by patients. Pictorial icons for feedback graphs used objects understood by patients. PRACTICE IMPLICATIONS: Preliminary data indicate the application is extremely helpful for individuals as they self-monitor their intake. If desired, DIMA could also be used for dietary counseling.