Empathy, stigma, and participatory design

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Conducting Research with Stigmatized Populations: Practices, Challenges, and Lessons Learned. CSCW 2018 Workshop. Maestre, J.F., Pater, J., Eikey, E.V., Jacobs, M., Warner, M., Marcu, G., Yarosh, S., Shih, P.C.

Conducting research with communities who are at risk of being stigmatized can be a challenging endeavor. It is often difficult to reach and recruit individuals for research purposes regarding a stigmatized condition or situation. Yet, researchers in our field have recognized the importance of work in this area and have individually developed a range of strategies to reach, recruit, and work with these populations. This workshop will invite researchers and practitioners to present, discuss, and compare strategies and experiences when working with stigmatized communities in the context of the ever-evolving nature of technology. The outcomes of the workshop will include an outline for an article that will summarize the strategies and practices discussed as well as identify the approaches that have led to the best outcomes across different populations.

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Designing an Emergency Response Community for Opioid Overdoses in Philadelphia. CHI 2018 Late-Breaking Work. Aizen, R., Marcu, G., Misra, A., Sieber, G., Schwartz, D. G., Roth, A., and Lankenau, S.

Fatal overdoses are a common symptom of the opioid epidemic which has been devastating communities throughout the USA for decades. Philadelphia has been particularly impacted, with a drug overdose death rate of 46.8 per 100,000 individuals, far surpassing other large cities' rates. Despite city and community efforts, this rate continues to increase, indicating the need for new, more effective approaches aimed at investigating and combating this issue. Through a human-centered design process, we investigated motivators and barriers to participation in a smartphone-based system that mobilizes community members to administer emergency care for individuals experiencing an overdose. We discuss evidence of the system's feasibility, and how it would benefit from integration with existing community-based efforts.

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TreatYoSelf: Empathy-driven behavioral intervention for marginalized youth living with HIV. PervasiveHealth 2016. Marcu, G., Dowshen, N., Saha, S., Sarreal, R. R., Andalibi, N.

Behavioral intervention technologies are well suited to addressing health behavior such as medication adherence, but only if successfully integrated into a user's daily life. Little is known about how to design such technologies to be adoptable, adaptable, useful, and feasible in everyday life. We report on the design process for TreatYoSelf, a smartphone application designed to improve medication adherence among youth living with HIV through reminders and positive reinforcement.


Collaborative reflection

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Time to Reflect: Supporting Health Services Over Time by Focusing on Collaborative Reflection. CSCW 2016. Marcu, G. Dey, A. K., Kiesler, S., Reddy, M.

When health services involve long-term treatment over months or years, providers have the ability, not present in acute emergency care, to collaboratively reflect on clients’ changing health data and adjust interventions. In this paper, we discuss temporality as a factor in the design of health information technology. We define a temporal spectrum ranging from time-critical services that benefit from standardization to long-term services that require more flexibility. We provide empirical evidence from fieldwork that we performed in organizations providing long-term behavioral and mental health services for children.

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Designing for Collaborative Reflection. PervasiveHealth 2014. Marcu, G., Dey, A. K., Kiesler, S.

A significant problem with electronic health records (EHRs) has been their failure to fit into existing workflows because they do not support informal documentation and communication. We used qualitative fieldwork and participatory design to investigate how EHRs could be designed to meet these needs. The contributions of this work are twofold: we identified and described the informal processes of documentation and communication that we refer to as collaborative reflection, and then developed design recommendations for EHRs to support these existing workflows.

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The Lilypad System: Designing for Collaborative Reflection. WISH 2013. Marcu, G., Demerson, H., Ratanalert, C., Shin, C., Jayasinghe, A., Dey, A. K., Kiesler, S.

Collaboration among healthcare teams requires integrating a patient’s data from different sources, reviewing changes in the data over time, and drawing from the knowledge of different practitioners to interpret these changes and make decisions. We call this data-driven process collaborative reflection. It enables decision-making over time based on what data reveals about the effects of interventions. In this work, we investigate the ad hoc, unstructured aspects of healthcare teamwork and address the need for tools that enable this type of work.


Mental health

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Not Alone: Designing for Self-Disclosure and Social Support Exchange After Pregnancy Loss. CHI 2018 Late-Breaking Work. Andalibi, N., Marcu, G., Moesgen, T., Mullin, R., Forte, A.

Pregnancy loss is a common complication in pregnancy. Yet those who experience it can find it challenging to disclose this loss and feelings associated with it, and to seek support for psychological and physical recovery. We describe our process for interleaving interviews, theoretical development, speculative design, and prototyping Not Alone to explore the design space for online disclosures and support seeking in the pregnancy loss context. In this paper, we focus on how interview findings informed the design of the Not Alone prototype, a mobile application aimed at enabling disclosure and social support exchange among those with pregnancy loss experience.

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A Framework for Overcoming Challenges in Designing Persuasive Monitoring Systems for Mental Illness. PervasiveHealth 2011. Marcu, G., Bardram, J. E., and Gabrielli, S.

Persuasive personal monitoring and feedback systems could help patients and clinicians manage mental illness. Mental illness is complex, difficult to treat, and carries social stigma. From a review of literature on bipolar disorder and interviews with bipolar disorder experts, we developed a framework for designing a persuasive monitoring system to support management of the illness. The framework applies a user-centered design process that is especially sensitive to the complexity of the illness, the difficulty of treatment, its stigma, and the goals of patients and clinicians. 


Behavior management in classrooms

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Co-Designing a Classroom Display to Support Behavior Management Plans. CHI 2018 Late-Breaking Work. Spiller, A.N., Caro, K., and Marcu, G.

The paradigm of ubiquitous computing has the potential to enhance classroom behavior management. In this work, we used an action research approach to examine the use of a tablet-based behavioral data collection system by school practitioners, and co-design an interface for displaying the behavioral data to their students. We present a wall-mounted display prototype and discuss its potential for supplementing existing classroom behavior management practices. We found that wall-mounted displays could help school practitioners to provide a wider range of behavioral reinforces and deliver specific and immediate feedback to students.

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Why Do They Still Use Paper? Understanding Data Collection and Use in Autism Education. CHI 2013. Marcu, G., Tassini, K., Carlson, Q., Goodwyn, J., Rivkin, G., Schaefer, K., Dey, A. K., Kiesler, S. 

Autism education programs for children collect and use large amounts of behavioral data on each student. Staff use paper almost exclusively to collect these data, despite significant problems they face in tracking student data in situ, filling out data sheets and graphs on a daily basis, and using the sheets in collaborative decision making. We conducted fieldwork to understand data collection and use in the domain of autism education to explain why current technology had not met staff needs.


Support for autism spectrum disorders

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Parent-Driven Use of Wearable Cameras for Autism Support: A Field Study with Families. Ubicomp 2012. Marcu, G., Dey, A. K., and Kiesler, S.

Recorded images of children’s activities can be useful to caregivers and clinicians who need behavioral evidence to support children with autism. However, image capture systems for autism are typically complex and provide only a top-down, outsider’s view. In this work, we assessed the use of cameras worn by children to record the context of their activities and interactions from their perspective. We used a technology probe to explore how this simple, parent-driven system could be designed for families to adopt in their homes.

Interactive Visual Supports for Children with Autism. Personal and Ubiquitous Computing, 2010. Hayes, G. R., Hirano, S., Marcu, G., Monibi, M., Nguyen, D. H., Yeganyan, M.

Interventions to support children with autism often include the use of visual supports, which are cognitive tools to enable learning and the production of language. Although visual supports are effective in helping to diminish many of the challenges of autism, they are difficult and time-consuming to create, distribute, and use. In this paper, we present the results of a qualitative study focused on uncovering design guidelines for interactive visual supports that would address the many challenges inherent to current tools and practices. We present three prototype systems that address these design challenges with the use of large group displays, mobile personal devices, and personal recording technologies.


Behavioral intervention technologies

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Bounce: Designing a Physical Activity Intervention for Breast Cancer Survivors. PervasiveHealth 2018. Marcu, G., Misra, A., Caro, K., Plank, M., Leader, A., Barsevick, A.

The pervasive use of personal mobile devices provides an advantage for the delivery of a behavioral intervention anywhere and anytime. However, behavioral outcomes are dependent on adoption and sustained use of mobile-based interventions. Design approaches for engagement and feasibility of use in everyday life have been studied among the general population, especially to promote physical activity. In this paper, we discuss a design process that addresses additional barriers to adoption when the target population has symptoms, limitations, or needs resulting from a specific health condition. We designed a smartphone-based physical activity intervention for breast cancer survivors by combining behavior change theory with empirical evidence. 

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The MONARCA Self-Assessment System: Persuasive Personal Monitoring for Bipolar Patients. PervasiveHealth 2011. Frost, M., Marcu, G., Hansen, R., Szaánto, K., Bardram, J. E. 

An increasing number of persuasive personal healthcare monitoring systems are being designed and tested, many of them being based on Smartphone technology. These systems could help patients and clinicians monitor and manage mental illness. Mental illness is complex, difficult to treat, and carries social stigma. We describe our setup to support the treatment of bipolar patients using a persuasive mobile phone monitoring system and a web portal.