We present a qualitative interview study that examines what happens when things do not go as planned with digital contraception. Through an analysis of 27 interviews with ongoing users of digital contraception at the time of the study, we convey participants’ accounts of their experiences regarding unplanned pregnancies or use of emergency contraception to avoid an unplanned pregnancy. Our analysis considers participants’ sense-making processes, and notably how they attended to questions of risk and responsibility. Finally, we depict how these participants came to continue using digital contraception after these experiences. Our study connects to ongoing conversations on technological failures in personal informatics and safety-critical systems. We emphasise that failure and success should not be used as a binary classification of long-term users’ relationships with self-tracking technology, which are intimate and critical. Rather, the sustained relation with an intimate technology is composed by several ‘failures’ which are interpreted, acted upon, and, ultimately, overcome.

Epilepsy is one of the most common neurological conditions, and people living with epilepsy (PLWE) often use social media as a resource. However, a comprehensive understanding of the topics represented in epilepsy-specific communities where PLWE may be more honest is essential to designing better technologies to address epilepsy self-management. To understand the main topics and concerns of PLWE, we collected 23,944 r/Epilepsy subreddit posts and performed topic modeling, thematic, and psycho-linguistic analyses. We found five major themes for those topics: symptoms and triggers (e.g., mental health and memory, sleep/nocturnal, and photosensitivity), treatment and healthcare experience (e.g., medication, understanding epilepsy), daily functions ( e.g., perceived level of independence and finances), seizure activity (e.g., auras and ictal symptoms), and support for PLWE (assisting PLWE and support for PLWE). We highlight the top psycho-linguistic characteristics of posts across different topics. Our contributions include providing an understanding of the challenges of an online epilepsy community and their social support needs, and implications for designing technologies.

The overturn of Roe v. Wade radically changed abortion access within the United States leaving women to navigate new financial, legal, and logistical challenges in managing their reproductive health needs. Reporting on findings from co-design workshops with participants from Indiana (a state with an abortion ban) and New York (where abortion is accessible), we investigate how women envision care in response to ongoing legal and medical uncertainty. Drawing together techno-feminist scholarship on care and reproductive health, in this paper we highlight several "entangled" design stories of anxiety and fear in navigating diminished healthcare services, as well as resistance and hope. Our findings prompt critical reflections for HCI on the role of health technology amid a world in which reproductive health, and medicine at large, is often a site of political contestation and conflict. Care-in-Retrograde re-orients a techno-utopian and future-oriented view of health technology to consider design work amid healthcare trajectories of disruption and reversal.

Low levels of health literacy concerning Alzheimer's Disease and related dementias (ADRD) impact African American/Black communities access to appropriate ADRD care. Additionally, a legacy of mistrust in medical research due to systemic racism, has resulted in insufficient participation in ADRD clinical trials among African American/Black adults. This study explores the potential of generative AI to improve ADRD literacy and encourage participation in clinical trials among African American/Black older adults. We designed a mobile health intervention featuring AI-driven conversational agents - a chatbot and a voice assistant - specifically developed for this population. We tested the quality of the intervention using heuristics methodology adapted to the target population along with inputs from African American/ Black medical professionals and UX designers. Key findings highlight the unique needs of the African American/Black communities for culturally relevant content that is accessible to users with varying language levels and tailored to users’ geographical location. Concerning the interaction, high levels of personalization and control over the interaction can promote the use of the tool, by minimizing complexity and maximizing accessibility. These findings show the novel contribution offered by our study in the domain of designing health technology with generative AI, particularly LLMS, for African American/Black communities.

Background As restrictive abortion laws continue to emerge in various states of the United States, pregnant individuals are turning to alternative channels to seek abortion medication, one of which is engaging in self-managed medication abortion, purchasing the medication from online websites without any medical prescriptions. Objective This study explores the phenomenon of self-managed abortion medication sought by using online tools, by focusing mainly on the motivational factors and concerns behind such a decision, and the abortion seekers’ journey throughout this process. Methods We conducted 20 semistructured interviews with individuals who have sought an abortion in the United States by buying medication online. The interviews occurred online, and participants were compensated for their participation. Participants were recruited from Reddit communities centered around abortion access. The interviews were audio-recorded and transcribed. The data were analyzed using a grounded theory approach. Results The results showed that participants expressed the need for anonymity, digital and physical, when seeking an abortion and considered self-managed abortion to be more economically and time-convenient. They also discussed how much self-managed abortion can lead to isolation and anxiety because of the lack of medical support and the sole reliance on information found online. The risks, such as counterfeit medication, possible fraud, and issues of timing, associated with seeking a self-managed abortion were extensively discussed by participants. Conclusions Our research uncovered the motivational factors behind relying on online tools to purchase abortion medication and engaging in self-managed abortion. Moreover, our research provides evidence of the importance of digital services to offer pregnant individuals a way to find abortion medication detached from their physical communities, circumventing the stigma associated with seeking an abortion and the sociocultural consequences of it. This promised anonymity is the core motivational factor that encourages pregnant individuals to prefer these systems compared to legal options. However, behind this promised anonymity, privacy and security concerns might be hidden.

Alzheimer's Disease and related dementia (ADRD) is prevalent in one in nine individuals age 65 or above, and it has a 65% higher risk of incidence for African American/Black adults. With an aging population in the United States and persisting healthcare inequities for African American/Black adults, our research aims to explore design requirements of a digital health platform for delivering culturally relevant content that informs African Americans/Black adults (45 years and older) about brain health and participation in clinical ADRD studies. We conducted seven focus groups (n = 44) to collect information on facilitators and barriers to brain health literacy and participation in clinical ADRD research, followed by seven participatory design workshops (n = 44) to collaboratively develop solutions for improving brain health literacy and participation in clinical ADRD research. Our findings provide insights into incorporating community into accessible, technological design for reducing brain health disparities for African American/Black adults.

BackgroundMany members of Black American communities, faced with the high prevalence of Alzheimer disease and related dementias (ADRD) within their demographic, find themselves taking on the role of informal caregivers. Despite being the primary individuals responsible for the care of individuals with ADRD, these caregivers often lack sufficient knowledge about ADRD-related health literacy and feel ill-prepared for their caregiving responsibilities. Generative AI has become a new promising technological innovation in the health care domain, particularly for improving health literacy; however, some generative AI developments might lead to increased bias and potential harm toward Black American communities. Therefore, rigorous development of generative AI tools to support the Black American community is needed. ObjectiveThe goal of this study is to test Lola, a multimodal mobile app, which, by relying on generative AI, facilitates access to ADRD-related health information by enabling speech and text as inputs and providing auditory, textual, and visual outputs. MethodsTo test our mobile app, we used the cognitive walk-through methodology, and we recruited 15 informal ADRD caregivers who were older than 50 years and part of the Black American community living within the region. We asked them to perform 3 tasks on the mobile app (ie, searching for an article on brain health, searching for local events, and finally, searching for opportunities to participate in scientific research in their area), then we recorded their opinions and impressions. The main aspects to be evaluated were the mobile app’s usability, accessibility, cultural relevance, and adoption. ResultsOur findings highlight the users’ need for a system that enables interaction with different modalities, the need for a system that can provide personalized and culturally and contextually relevant information, and the role of community and physical spaces in increasing the use of Lola. ConclusionsOur study shows that, when designing for Black American older adults, a multimodal interaction with the generative AI system can allow individuals to choose their own interaction way and style based upon their interaction preferences and external constraints. This flexibility of interaction modes can guarantee an inclusive and engaging generative AI experience.

Introduction:Consistent exposure to environmental stressors increases the risk of Alzheimer's disease and related dementias (ADRD). Little is known about the timing, location, and nature of these stressors. We outline the protocol for an ongoing study using a novel ecological momentary assessment app to evaluate environmental stressors in urban and rural adults with mild cognitive impairment (MCI). Methods:We assess cognitive status at baseline and follow-up appointments for 2 years. During a 2-week stress-reporting period, participants self-report environmental stressors. We monitor physiological data via Smartwatch. The app collects geospatial data, which we analyze via spatiotemporal regression models. Results:The study will take 3 years to complete. Discussion:This study will advance knowledge of when, where, and what stressors occur among older adults and will underscore targets for intervention at individual and neighborhood levels to prevent progression from MCI to ADRD and reduce urban-rural disparities in older adults.

Historically, transgender people of color (TPOC) have been silenced in white trans spaces for not fitting into transnormativity - the typical white, binary, skinny, and privileged image of trans people, and for raising concerns related to race, culture, and ethnicity. Social media and online communities serve as supportive spaces for transgender (shortened to trans) individuals; however, trans people of color require even more support combating systematic oppression, managing increased levels of discrimination, and navigating their cultural backgrounds. In order to understand how TPOC use social media, we explore the experiences of TPOC on Reddit. We used the Reddit API to obtain Reddit posts from four prominent transgender subreddits (r/ftm, r/mtf, r/trans, and r/Non-Binary) which included the phrase "people of color" or the abbreviation "POC", resulting in a total of 145 posts and 2867 comments. Thematic analysis was then used to identify three themes of discussion - alienation, support, and existing in physical spaces, which informed our design considerations. Experiences shared in the Reddit posts indicated that TPOC feel overshadowed by white trans individuals in online communities and desire to build connections with other TPOC both online and in person. We propose design recommendations for both Reddit as a platform and subreddit moderators that regulate online trans communities to encourage growing networks among TPOC, improve communication among users and moderators, and design spaces that center POC voices within subreddits, all of which provide a much more supportive online environment for TPOC.

Since the overturning of Roe v. Wade, accessing medication abortion in the U.S. has become increasingly difficult and, often, illegal. In this restrictive landscape, digital technology has emerged as a vital tool for self-managed abortion. Social media platforms like Reddit, particularly the subreddit r/abortion, serve as crucial spaces for accessing reliable information and sharing abortion experiences. This paper explores the preliminary findings of our work on how r/abortion users share their experiences, construct personal narratives, and seek validation from the community. We thematically analyzed posts from October 2022 to October 2023, uncovering common themes. Our findings show that users share their stories to normalize their experiences, seek reassurance, and offer support to others in similar situations. From these findings, we discuss the unique role of online communities in a restrictive and oppressive social context.

BACKGROUND:Emerging evidence indicates that autistic adults without intellectual disabilities (ID) are at elevated risk of developing cardiovascular disease (CVD). AIMS:This cross-sectional survey study aimed to assess the prevalence of physiological and mental health risk factors for CVD and examine how physical activity (PA) and sedentary time (ST) relate to CVD risk in autistic adults without ID. METHODS:An online self-report survey addressing PA, ST, and CVD risk factors was delivered to 229 autistic adults without ID aged 18-55 years. Participants were recruited via direct contact with autism advocacy organizations in the U.S. and autism support groups on social media. Binary logistic regression analyses were used to explain the impact of PA and ST on CVD risk factors. RESULTS:Higher ST was significantly associated with increased odds for high blood pressure, stroke, and mental health risk factors (depression, anxiety, bipolar, and obsessive-compulsive disorder; all p < 0.05). No significant associations were found between PA and CVD risk factors. CONCLUSIONS:Excessive ST in autistic adults without ID is associated with an increased risk for certain CVD factors, particularly those related to poor mental health. Health interventions should focus on breaking up prolonged sitting as a CVD prevention strategy in this population.

Co-design is a collaborative and participatory design (PD) method frequently used in face-to-face settings. However, in-person studies can be difficult or even impossible to conduct in certain situations due to different constraints. Thus, an increasing line of work has been relying on methods that allow researchers to conduct PD studies remotely. In this paper, we cover findings of a case study with 25 participants being part of asynchronous and synchronous remote co-design workshops. It was found that there are important differences between the two modalities regarding participation and engagement, activity design, as well as issues with privacy and confidentiality. We also provide methodological implications and actionable steps to conduct remote co-design studies both synchronously and asynchronously more effectively.

Although access to abortion is a public health service, guaranteed by law, many formal and informal obstacles prevent people from accessing it within the Italian national health system. This makes abortion often unobtainable, specifically in certain geographical areas of the peninsula. Many feminist associations recently blossomed in Italy, intending to counteract this phenomenon and improve abortion access. Obiezione Respinta, among them, has created a digital map tracking, by relying on users’ inputs, healthcare facilities that refuse to provide abortion or contraceptive services. This paper analyzes the technological contribution provided by Obiezione Respinta as an effort to digitally map abortion access in Italy. By conducting usability testing with 19 participants, we observed that digital maps of abortion access can raise awareness on the restrictions of accessing abortion, but fail to be a tool to assist people throughout their abortion journey. The main issues outlined were related to data disparity between rural and urban areas, not providing resources concerning emotional and psychological well-being, and outdated and inaccurate information. These findings provide evidence of the limits of bottom-up technological interventions concerning relying on digital technologies to foster abortion access, while also showing future design opportunities.

In a world faced with ever-growing crises of climate change, economic inequality, and social injustice, sustainability has become a catch-all term to address these challenges and more. However, efforts to measure the social, environmental, and economic factors of sustainability are undermined by inconsistent understandings of the term. This research seeks to address this gap in sustainability research by constructing a wide-reaching propensity instrument that incorporates the different constructs of sustainability. A literature review informed propensity instrument construction. The first version of the instrument included 269 items, which were narrowed to 100 after an iterative process of merging, refinement, and elimination. The 100 scale items were deployed through an online survey, where 162 responses were collected to inform data analysis. Principal component analysis revealed two primary factors of Sustainable Behavior and Sustainability Attitude. After further refinement based on items’ factor-loading scores and communalities, 13 items remained that described sustainability as environmentally and socially conscious behaviors and attitudes. The third construct of sustainability, economics, was not present after such refinements, suggesting that purely economic behaviors and attitudes are disparate from individuals’ sustainability propensity. This new propensity instrument informs the understanding of sustainability and provides a tool for measuring sustainability with more breadth.

Physical inactivity and sedentarism among autistic adults are a growing public health concern. By integrating behavior change theories and emphasizing unique preferences for visuospatial learning and gaming technology, we hypothesize that gamified mobile health (mHealth) applications can be effective at increasing free-living physical activity and reducing sedentary behavior in autistic adults.

The goal of this study is to investigate the association between chronic non-cancer pain (CNCP) and mild cognitive impairment (MCI)/Alzheimer’s disease and related dementias (ADRDs) development among adults aged ≥50 using administrative claims data from a national commercial health insurance company during 2007–2017. To reduce selection bias, propensity-score matching was applied to select comparable CNCP and non-CNCP patients. Time-dependent Cox proportional-hazards regressions were conducted to estimate the hazard ratios (HRs) of incident MCI/ADRDs. Of 170,900 patients with/without CNCP, 0.61% developed MCI and 2.33% had been diagnosed with ADRDs during the follow-up period. Controlling for potential confounders, CNCP patients had a 123% increase in MCI risk (HR = 2.23; 95% CI = 1.92–2.58) and a 44% increase in ADRDs risk (HR = 1.44; 95% CI = 1.34–1.54) relative to non-CNCP patients. CNCP is a risk factor for MCI/ADRDs. Promoting awareness and improving early CNCP diagnosis in middle-aged and older adults should be incorporated into cognitive impairment and dementia prevention.

Epilepsy, a prevalent chronic neurological disorder, presents numerous challenges for people with epilepsy (PWEs) and their caregivers. They experience difficulties in receiving proper care and support due to stigma and misconceptions. Promoting public awareness in early education would be critical to reduce the stigma and to properly support them. We conducted 145 surveys and 21 interviews with teachers, school nurses, and parents of elementary and middle school students. While the participants exhibited slightly positive attitudes towards PWEs, we identified obstacles that hinder learning about epilepsy and seizure first aid: inadequate education and limited information sharing among school stakeholders. Moreover, there is a pressing need for age-appropriate education that considers the students' ages and perceptual levels. Considering the current limitations and needs, we propose potential implications for future information and communication technologies (ICTs) designs, including knowledge-sharing systems and an educational game aimed at enhancing epilepsy awareness and fostering collaborative care in elementary and middle school environments.

Background Older African American and Black adults are twice as likely to develop Alzheimer disease and related dementias (ADRD) and have the lowest level of ADRD health literacy compared to any other ethnic group in the United States. Low health literacy concerning ADRD negatively impacts African American and Black people in accessing adequate health care. Objective This study explored how 3 technological modalities—voice assistants, chatbots, and mobile apps—can assist older African American and Black adults in accessing ADRD information to improve ADRD health literacy. By testing each modality independently, the focus could be kept on understanding the unique needs and challenges of this population concerning the use of each modality when accessing ADRD-related information. Methods Using the Wizard of Oz usability testing method, we assessed the 3 modalities with a sample of 15 older African American and Black adults aged >55 years. The 15 participants were asked to interact with the 3 modalities to search for information on local events happening in their geographical area and search for ADRD-related health information. Results Our findings revealed that, across the 3 modalities, the content should avoid convoluted and complex language and give the possibility to save, store, and share it to be fully accessible by this population. In addition, content should come from credible sources, including information tailored to the participants’ cultural values, as it has to be culturally relevant for African American and Black communities. Finally, the interaction with the tool must be time efficient, and it should be adapted to the user’s needs to foster a sense of control and representation. Conclusions We conclude that, when designing ADRD-related interventions for African American and Black older adults, it proves to be crucial to tailor the content provided by the technology to the community’s values and construct an interaction with the technology that is built on African American and Black communities’ needs and demands.