An mHealth Design to Promote Medication Safety in Children with Medical Complexity.

BACKGROUND: Children with medical complexity (CMC) are uniquely vulnerable to medication errors and preventable adverse drug events because of their extreme polypharmacy, medical fragility, and reliance on complicated medication schedules and routes managed by undersupported family caregivers. There is an opportunity to improve CMC outcomes by designing health information technologies that support medication administration accuracy, timeliness, and communication within CMC caregiving networks. OBJECTIVES: The present study engaged family caregivers, secondary caregivers, and clinicians who work with CMC in a codesign process to identify: (1) medication safety challenges experienced by CMC caregivers and (2) design requirements for a mobile health application to improve medication safety for CMC in the home. METHODS: Study staff recruited family caregivers, secondary caregivers, and clinicians from a children's hospital-based pediatric complex care program to participate in virtual codesign sessions. During sessions, the facilitator-guided codesigners in generating and converging upon medication safety challenges and design requirements. Between sessions, the research team reviewed notes from the session to identify design specifications and modify the prototype. After design sessions concluded, each session recording was reviewed to confirm that all designer comments had been captured. RESULTS: A total of N = 16 codesigners participated. Analyses yielded 11 challenges to medication safety and 11 corresponding design requirements that fit into three broader challenges: giving the right medication at the right time; communicating with others about medications; and accommodating complex medical routines. Supporting quotations from codesigners and prototype features associated with each design requirement are presented. CONCLUSION: This study generated design requirements for a tool that may improve medication safety by creating distributed situation awareness within the caregiving network. The next steps are to pilot test tools that integrate these design requirements for usability and feasibility, and to conduct a randomized control trial to determine if use of these tools reduces medication errors.

Care Partner Confidence and Experiences in Legal Planning for People Living with Dementia: A Mixed Methods Study.

BACKGROUND AND OBJECTIVES: Care partners of persons living with dementia perform complex legal planning tasks. The purpose of this study was to survey care partners in the United States to understand their confidence and experience in performing legal planning tasks. RESEARCH DESIGN AND METHODS: This study used a parallel-mixed methods research design. We administered a web-based survey to 318 adults who self-identified as care partners of persons living with dementia. The survey contained Likert scale questions and open-ended questions about legal planning tasks. Multivariate linear regression was used to analyze quantitative data and inductive thematic analysis was used to analyze qualitative data. RESULTS: Care partners were on average 53 years of age and 78% female. The three topics in which participants were least confident were: protecting oneself legally as a care partner; options when legal documents are not in place and a family member is not legally competent; and circumstances when legal documents should be updated or renewed. We observed significant differences in legal planning confidence between newer and more experienced care partners (p<.001); lower- and higher-income care partners (p=.01); and adult child versus spousal care partners (p<.001). Thematic analysis revealed that legal planning challenges include initiating a conversation with the person living with dementia, understanding and using legal materials, and accessing materials that accommodate individual differences. DISCUSSION AND IMPLICATIONS: It is vital to develop legal planning interventions that are tailored to specific subgroups of care partners, and to maximize the clarity, comprehensiveness, and accessibility of available legal planning education.

Co-Design of a Financial and Legal Planning Tool for Care Partners of People Living With Alzheimer's Disease and Related Dementias.

Background and Objectives: Care partners of people living with Alzheimer's disease and related dementias (ADRD) are faced with substantial legal and financial planning related to their care partner role. However, many care partners lack the legal and financial support needed to manage this role. The purpose of this study was to engage ADRD care partners in a remote participatory design process to create a technology-based financial and legal planning tool that meets care partner needs. Research Design and Methods: We formed 2 researcher-facilitated co-design teams comprised of n = 5 ADRD care partners each. We conducted a series of 5 parallel co-design sessions aimed to engage co-designers in interactive discussions and design activities to create the financial and legal planning tool. We used inductive thematic analysis of design session recordings to identify design requirements. Results: Co-designers were 70% female with a mean age of 67.3 years (standard deviation 9.07) and cared for a spouse (80%) or a parent (20%). Between Sessions 3 and 5, the average system usability scale score of the prototype increased from 89.5 to 93.6, indicating high usability. Analyses yielded 7 overarching design requirements for a legal and financial planning tool: support for action now (eg, prioritized to-do lists); support for action later (eg, reminders for keeping legal documents up-to-date); knowledge when I need it (eg, tailored learning modules); connection to resources I need (eg, state-specific financial support opportunities); everything where I can see it (eg, comprehensive care budgeting tool); sense of privacy and security (eg, password protection); and accessibility for all (eg, tailoring for low-income care partners). Discussion and Implications: The design requirements identified by co-designers provide a foundation from which we can build technology-based solutions to support ADRD care partners in financial and legal planning.

Interventions in the Home and Community for Medically Complex Children: A Systematic Review.

CONTEXT: Most care occurs in home and community settings; however, the best approaches to improve CMC health are poorly understood. OBJECTIVE: We sought to summarize evidence from interventions in the home and community to improve health for children with medical complexity (CMC) using comprehensive conceptions of CMC health. DATA SOURCES: PubMed, CINAHL, Scopus, and Cochrane databases. STUDY SELECTION: Included studies evaluated interventions for CMC caregivers in home or community settings and evaluated at least 1 outcome in 10 domains of CMC health. DATA EXTRACTION: Data were extracted on participant characteristics, intervention activities, and outcomes. Interventions were categorized thematically into strategies, with results summarized by effects on outcomes within each health domain. RESULTS: The 25 included interventions used 5 strategies: intensive caregiver education (n = 18), support groups (n = 3), crisis simulation (n = 2), mobile health tracking (n = 1), and general education (n = 1). Substantial variation existed in the extent to which any outcome domain was studied (range 0-22 studies per domain). Interventions addressing 4 domains showed consistent improvement: support group and mobile health tracking improved long-term child and caregiver self-sufficiency; mobile health tracking improved family-centered care; intensive caregiver education and support groups improved community system supports. Three domains (basic needs, inclusive education, patient-centered medical home) were not studied. LIMITATIONS: Risk of bias was moderate due primarily to limited controlled experimental designs and heterogeneous population and outcome definitions. CONCLUSIONS: Interventions that improve CMC health exist; however, current studies focus on limited segments of the 10 domains framework. Consensus outcome measures for CMC health are needed.

Caregiver perceptions of in-home COVID-19 testing for children with medical complexity: a qualitative study.

BACKGROUND: In-home direct antigen rapid testing (DART) plays a major role in COVID-19 mitigation and policy. However, perceptions of DART within high-risk, intellectually impaired child populations are unknown. This lack of research could negatively influence DART uptake and utility among those who stand to benefit most from DART. The purpose of this study was to describe caregivers' perceptions of an in-home COVID-19 DART regimen in children with medical complexity, including the benefits and limitations of DART use. METHODS: This qualitative study was a subproject of the NIH Rapid Acceleration of Diagnostics Underserved Populations research program at the University of Wisconsin. We combined survey data and the thematic analysis of semi-structured interview data to understand caregivers' perceptions of in-home COVID-19 testing and motivators to perform testing. Caregivers of children with medical complexity were recruited from the Pediatric Complex Care Program at the University of Wisconsin (PCCP). Data were collected between May and August 2021. RESULTS: Among n = 20 caregivers, 16/20 (80%) of their children had neurologic conditions and 12/20 (60%) used home oxygen. Survey data revealed that the largest caregiver motivators to test their child were to get early treatment if positive (18/20 [90%] of respondents agreed) and to let the child's school know if the child was safe to attend (17/20 [85%] agreed). Demotivators to testing included that the child could still get COVID-19 later (7/20 [35%] agreed), and the need for officials to reach out to close contacts (6/20 [30%] agreed). From interview data, four overarching themes described perceptions of in-home COVID-19 testing: Caregivers perceived DART on a spectrum of 1) benign to traumatic and 2) simple to complex. Caregivers varied in the 3) extent to which DART contributed to their peace of mind and 4) implications of test results for their child. CONCLUSIONS: Although participants often described DART as easy to administer and contributing to peace of mind, they also faced critical challenges and limitations using DART. Future research should investigate how to minimize the complexity of DART within high-risk populations, while leveraging DART to facilitate safe school attendance for children with medical complexity and reduce caregiver burden.

"It made me feel like I wasn't alone in the darkness": exploring dementia care network communication and coordination through a digital health platform.

OBJECTIVE: To explore the use of a shared communication and coordination platform-the CareVirtue journal feature-for care networks of people living with Alzheimer's disease and related dementias to inform the design of care network support technologies. MATERIALS AND METHODS: In the primary study, care networks comprised the primary caregiver and other caregivers they invited to participate (eg, family members, in-home aides) used CareVirtue, for 60 days followed by a semistructured interview to explore primary caregivers' perceptions of usefulness. This secondary analysis focused on use of the shared journal feature of CareVirtue, which allowed care networks to communicate through posts that were shared with the network and to which network members could respond. Journal posts were analyzed using a deductive/inductive content analysis to categorize information behavior. We also conducted a thematic analysis of the interviews to identify primary caregivers' perceptions of the journal's usefulness. RESULTS: Care networks used the journal for: (1) information acquisition, (2) information sharing, (3) strategy development, and (4) information feedback. Thematic analysis revealed that caregivers felt the journal was useful at the individual, care network, and relational levels and that journal integration was influenced by care network structure and relationships. DISCUSSION: Care networks used the journal to document, share, and acquire information; co-create strategies; and provide support. The usefulness of this shared communication and coordination platform included individual and care network level benefits. CONCLUSION: These findings point to the importance of caregiver-centered technologies that support both the individual primary caregiver and the care network.

Depression, Anxiety, and Daily Activity Among Adolescents Before and During the COVID-19 Pandemic: Cross-sectional Survey Study.

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.

Adolescent Health on Social Media and the Mentorship of Youth Investigators: Five Content Analysis Studies Conducted by Youth Investigators.

Although the literature on adolescent health includes studies that incorporate youth perspectives via a participatory design, research that is designed, conducted, and presented by youth remains absent. This paper presents the work of 5 youth investigators on the intersecting topics of adolescent health and social media. Each of these youths was equipped with tools, knowledge, and mentorship for scientifically evaluating a research question. The youths developed a research question that aligned with their interests and filled a gap that they identified in the literature. The youths, whose projects are featured in this paper, designed and conducted their own research project, drafted their own manuscript, and revised and resubmitted a draft based on reviewer input. Each youth worked with a research mentor; however, the research questions, study designs, and suggestions for future research were their own.

How Our Technology Use Changed in 2020: Perspectives From Three Youths.

The Technology and Adolescent Mental Wellness program (TAM) is a research program with the primary goals of promoting research on the topic of adolescent technology use and mental wellness, creatively disseminating that research, and fostering community among stakeholders. Our foundational question is this: How can technology support adolescent mental wellness? Youth are key stakeholders in pursuit of this foundational question. In this commentary, we invited 3 members of TAM's youth advisory board to respond to the following question: "How did your technology use change in 2020?" Jessica, Jared, and Babayosimi describe their technology use during COVID-19 as dynamic, and neither uniformly positive nor negative. Further, these 3 youths differ in their perceptions of the same technologies-social media and online school, for example-as well as their perceived ability to self-regulate use of those technologies. We invite you to weigh these perspectives just as we do at TAM-not as empirical findings in themselves, but as examples of youth ideas for future empirical investigation.

The mediating role of depressive and anxiety symptoms in the association between obesity and problematic social media use in young adults.

BACKGROUND: Obesity has been associated with problematic internet use or internet use characterized by impulsivity, dependence, risk taking or impairment. Despite the unique affordances and growing popularity of social media, few studies have investigated obesity in relation to the problematic use of social media in contrast to general internet use. OBJECTIVE: The purpose of this study was to explore the relationship between obesity and problematic social media use and to test symptoms of anxiety and depression as potential mediators of this relationship. METHODS: A cross-sectional online survey was administered to young adults between the ages of 18-25 using the Qualtrics platform. Two mediation models were tested using model 4 of the PROCESS Macro in SPSS. RESULTS: Participants (n = 4939) were between the ages of 18-25 (M = 21.74, SD = 2.3). Participants were 50.6% female (n = 2496) and 58.1% White (n = 2871). Reporting obesity was positively associated with reporting increased levels of problematic social media use, B = 1.15, SE B = .32, t(1, 4938) = 3.59, p < .001. The indirect effects in each model from obesity to problematic social media use, through both symptoms of anxiety and depression separately, were significant, B = .14, SE B = .05, confidence interval [0.055, .231] and B = .16, SE B = .07, confidence interval [0.018, .317], respectively. CONCLUSIONS: Young adults who present both with obesity and with symptoms of depression or anxiety are more at risk for problematic social media use. These patients may benefit from education on health-promoting social media use.

Exploring dementia family caregivers' everyday use and appraisal of technological supports.

Family caregivers provide the majority of care for people with dementia, often balancing multiple caregiving roles. Technology-based interventions have demonstrated strong potential for supporting family caregivers in navigating these roles, yet translational uptake of these interventions remains limited. A comprehensive understanding of how caregivers engage and evaluate everyday technological supports is necessary to foster broader adoption. Through semi-structured interviews with 20 caregivers, the present study aimed to explore caregivers' everyday use and appraisal of technological supports. We found that caregivers use specific technological supports to meet specific caregiving needs (e.g. coordination, information seeking, direct care), and exhibit unique technology use patterns (e.g. trial-and-error) shaped by the caregiving need. Caregivers shared positive appraisals of technological supports for caregiving, citing the role of perceived utility, existing familiarity, and social resources in their acceptance and uptake. These findings illustrate important perspectives regarding everyday technology with immediate relevance for intervention design and functionality.

The desktop, or the top of the desk? The relative usefulness of household features for personal health information management.

Sixty percent of the US population manages at least one chronic illness. For these patients, personal health information management (PHIM) is an integral part of daily life, and largely occurs within the home. However, the way in which the home supports PHIM has not been systematically investigated. The present study examined how members of the diabetic population use features of the home environment to support PHIM. Participants (N = 60) explored a simulated home environment, the VR CAVE, and identified the most useful features for performing three examples of PHIM tasks. The computer was perceived as the most useful feature for PHIM. However, perceived usefulness of features varied based on the PHIM task performed and the rooms in which features appeared. We conclude that a detailed study of the affordances of features is necessary to ease the burden of managing chronic illness, particularly diabetes mellitus, in the sociotechnical system of the home.

Home is where the head is: a distributed cognition account of personal health information management in the home among those with chronic illness.

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.