Managing chronic illness requires personal health information management (PHIM) to be performed by lay individuals. Paramount to understanding the PHIM process is understanding the sociotechnical system in which it frequently occurs: the home environment. We combined distributed cognition theory and the patient work system model to investigate how characteristics of the home interact with the cognitive work of PHIM. We used a 3D virtual reality CAVE that enabled participants who had been diagnosed with diabetes (N = 20) to describe how they would perform PHIM in the home context. We found that PHIM is distinctly cognitive work, and rarely performed 'in the head'. Rather, features of the physical environment, tasks, people, and tools and technologies present, continuously shape and are shaped by the PHIM process. We suggest that approaches in which the individual (sans context) is considered the relevant unit of analysis overlook the pivotal role of the environment in shaping PHIM. Practitioner Summary: We examined how Personal Health Information Management (PHIM) is performed in the homes of diabetic patients. We found that approaches to studying cognition that focus on the individual, to the exclusion of their context, overlook the pivotal role of environmental, social, and technological features in shaping PHIM.

Background The COVID-19 pandemic has resulted in significant changes to adolescents’ daily lives and, potentially, to their mental health. The pandemic has also disproportionately affected historically marginalized and at-risk communities, including people of color, socioeconomically disadvantaged people, people identifying as female, and youth. Objective This study aimed to understand differences in depression and anxiety among 2 groups of adolescents in the United States before and during the COVID-19 pandemic, and to examine demographic and daily activity variables associated with depression and anxiety. Methods Online surveys were distributed in 2019 and 2020. Demographic questions were asked at the time of enrollment, and included participants’ age, gender, race and ethnicity, and socioeconomic status (SES). The 8-item Patient Health Questionnaire was used to assess symptoms of depression, and the 7-item Generalized Anxiety Disorder scale was used to assess symptoms of anxiety. A total of 4 pandemic-specific daily activity questions were asked only of the pandemic group. Analyses of covariance compared depression and anxiety between prepandemic and pandemic groups. Demographic and lifestyle variables were included as covariates. Results The sample comprised a total of 234 adolescents, with 100 participants in the prepandemic group and 134 participants in the pandemic group. Within the pandemic group, 94% (n=126) of adolescents reported being out of school due to the pandemic, and another 85.8% (n=115) and 57.1% (n=76) were prevented from extracurricular activities and exercise, respectively. Higher depression was seen in the pandemic group, with a least-squares adjusted mean of 7.62 (SD 1.36) compared to 6.28 (SD 1.42) in the prepandemic group, although the difference was not significant (P=.08). There was no significant difference in anxiety scores between the 2 groups (least-squares adjusted means 5.52, SD 1.30 vs 5.01, SD 1.36; P=.48). Within the pandemic group, lower SES was predictive of anxiety, such that those in the pandemic group of lower SES were more anxious than their higher-SES peers (least-squares adjusted means 11.17, SD 2.34 vs 8.66, SD 2.16; P=.02). Within the pandemic group, being out of work or school and not partaking in extracurricular activities or exercise due to the pandemic were not associated with higher depression or anxiety scores. Conclusions In this study, neither being in the pandemic group nor experiencing changes in daily activity due to the pandemic was associated with higher depression or anxiety. However, we found that adolescents from lower SES backgrounds experienced significantly more anxiety during the pandemic than their more privileged peers. Both instrumental and mental health interventions for low-income adolescents are imperative.

The United Nations Convention on the Rights of the Child requires researchers to give due weight to youth voices on matters that impact them [1]. Furthermore, global events in the past year have led to calls for increased youth engagement in revisiting policies, systems, and communities impacted by . However, most adolescent-centered research studies involve adolescents only as participants. A study that reviewed community-based participatory research publications found that only 15% of studies described partnering with youth in some phase [3]. Previous work has illustrated processes to incorporate youth into civic planning [4], patient advisory boards [5], and educational environments [6]. Publications describing adolescents as research advisors are notably missing from the empirical literature. This commentary describes key considerations for researchers interested in integrating adolescent advisors into their work and shares our team's experience developing and maintaining two youth advisory boards (YABs) with distinct purposes.

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