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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. 

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. 

Adolescence is a time when patients are approaching autonomy, both developmentally and legally. Yet they are still minors and are likely to encounter contradictions between situations in which they are treated as children and ones in which they are treated as adults. Being able to access their medical information may enable adolescents to take on a participatory role in their health care. However, federal policy, state law, and community norms are not consistent regarding adolescent healthcare and privacy. For example, in some regions and under some circumstances, adolescents may have consent and privacy rights similar to those of adults, with the right to make some, or all, of their own sensitive medical decisions privately. In other cases, parental notification is the norm, or guidance is unclear or lacking. In the absence of national guidelines, medical centers encounter serious challenges when developing policies about adolescent access to medical records via patient portals. The American Academy of Pediatrics has made recommendations, but these are not binding. To explore diversity in adolescent privacy policies and identify common approaches, we are conducting a qualitative study with key informants from different types of medical organizations in different regions of the country. The main objective is to identify diversity in adolescent privacy features within the patient portal. Another objective is to enumerate the factors involved in making portal access decisions. A third objective is to identify the potential need for more formalized guidance and standards on privacy features within the patient portal