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Adolescents with chronic conditions must work with family caregivers to manage their illness experiences. To explore how technology can support collaborative documentation of these experiences, we designed and distributed a paper diary probe kit in a two-week field deployment with 12 adolescent–parent dyads (24 participants). Three insights emerged from the study that highlight how technology can support shared illness management: 1) provide scaffolds to recognize physical and emotional experiences in the context of daily activities; 2) help families reconstruct patient experiences; and 3) adapt to individual preferences for capturing, representing and sharing experiences. We discuss opportunities for HCI research that follow from these findings and conclude by reflecting on the benefits and limitations of using diary probes with adolescent patients and their parental caregivers. 

Post-traumatic stress disorder (PTSD) disproportionately affects United States veterans, yet they may be reluctant to seek or engage in care. We interview 21 participants, including veterans with PTSD, clinicians who treat veterans and friends and family that support veterans through mental health ordeals. We investigate the military identity these veterans share. We explore how this may add to their reluctance in care-seeking behaviors. We also explore the roles of human and non-human intermediaries in ecologies of care and the potential for enhancing patient empowerment in current clinical treatment contexts. We discuss how military culture can be utilized in clinical care, how multiple perspectives can be leveraged to create a more holistic view of the patient, and finally, how veterans can be empowered during treatment. We conclude with recommendations for the design of sociotechnical systems that prioritize the above in support of the mental well-being of veterans with PTSD. 

Patient-generated data, such as recorded Observations of Daily Living (ODL) and Patient-Reported Outcomes (PRO) data, are valued sources of information in oncology care. However, prior work largely focuses on capturing clinician-defined, patient-generated data in adult oncology care. Emerging research at the intersection of human–computer interaction and medical informatics suggests that visual narratives of patients’ observations of daily living (Visual ODLs) could better support multi-party review of patients’ everyday symptoms and quality of life, potentially improving patient–clinician communication. In this paper, we build on a prior study of Visual ODLs by describing a formative, two-phase study with 15 pediatric oncology clinicians. In Phase I, we analyzed data from ethnographic interviews in a pediatric oncology setting to capture the needs of nurses, nurse practitioners, and oncologists. In Phase II, we constructed two low-fidelity dashboard display prototypes, populated with Visual ODLs contributed by actual adolescent oncology patients, and we subsequently interviewed pediatric oncology clinicians who reviewed each dashboard design. Findings from our study contribute four key design objectives for presenting interactive Visual ODL dashboards in pediatric oncology, along with three use cases for using these dashboards for symptom tracking and communication. 

During phases of treatment and between visits to the doctor’s office, adolescent patients with complex chronic illnesses must recognize and communicate about illness-related experiences with a variety of caregivers. However, significant gaps exist in our understanding of how to design appropriate techniques for eliciting day-to-day, illness- related observations from these patients. To address this gap, we draw on qualitative research on the needs of adolescents with complex chronic illnesses to propose a new, in situ approach to eliciting participatory design input, called “Just-in-Time Design.” Our approach draws inspiration from future breaching experiments and just- in-time intervention research, to both elicit adolescents’ momentary experiences and couple these with participatory design feedback. In this position paper we discuss our work-in-progress including how we are currently applying Just-in-Time Design to design new symptom-tracking tools for adolescents with cancer and chronic blood disorders 

Teens with complex chronic illnesses have difficulty understanding and articulating symptoms such as pain and emotional distress. Yet, symptom communication plays a central role in clinical care and illness management. To understand how design can help overcome these challenges, we created a visual library of 72 sketched illustrations, informed by the Observations of Daily Living framework along with insights from 11 clinician interviews. We utilized our library with storyboarding techniques, free-form sketching, and interviews, in co-design sessions with 13 pairs of chronically-ill teens and their parents. We found that teens depicted symptoms as being interwoven with narratives of personal and social identity. Teens and parents were enthusiastic about collaboratively-generated, interactive storyboards as a tracking and communication mechanism, and suggested three ways in which they could aid in communication and coordination with informal and formal caregivers. In this paper, we detail these findings, to guide the design of tools for symptom-tracking and incorporation of patient-generated data into pediatric care.