Peer Reviewed

The COVID-19 pandemic caused a global disruption of daily routines. Children with behavioral disabilities were particularly impacted, losing access to critical face-to-face behavioral health services. In response, many providers and parents attempted to recover these routine services, primarily with digital technology. In April-July 2020, we conducted a mixed-methods study with parents of children with behavioral disabilities. Using a six-week survey study followed by semi-structured interviews, we identified how disrupted behavioral health routines impacted children, and how care teams recovered these services using digital technology. The recovery of children's behavioral health services was delayed, resulting in negative consequences for the children. The stoppage of services undermined care teams' coordination mechanisms, necessitating they establish digital communication channels. This digital communication supported the recovery of some services, but not most. Video conferencing was overstimulating for some children, and most recovered services required parental involvement. Our findings have substantial implications for the CSCW community regarding the design of digital technology to increase usability by (and supports for) children with disabilities, and how behavioral health practice could enable resilient behavioral health services that could withstand the impact of future disruption.

Chronic disease management requires numerous family-based activities. Although HCI has investigated family-based chronic disease management, there is no systematic basis for technology design. Routines support adherence; thus, we used routines theory to: investigate chronic disease management activities in families; the roles of family, patients, and artifacts; activity routinization; and routine interrelationships. The 2-year study included 38 families managing type 2 diabetes and/or HIV/AIDS. Data collection involved individual and family group interviews, surveys, and home tours. Families performed 14 chronic disease management activities within five interrelated cycles, and one less-connected activity. Most families included both family members and patients in activities—although this could be problematic. Activities were typically only moderately routinized and followed cyclical activity patterns joined by sequential or concurrent interdependence. A medication-taking routine ecology had coordination difficulties. Results surface design implications for a potentially powerful new class of technologies to support family-based chronic disease management routines.

Colonoscopy demands multi-finger coordinated motion to achieve safe navigation. As a result, training for colonoscopists is challenging and skill assessment currently relies on subjective scoring by expert proctors. There is a need to provide tools for skill assessment and aid with training new interventionalists. This paper presents a new concept of an in-hand robotic mediation device that can be used for both skill assessment and training. The robotic device can be used to infer the kinematic motion as well as the power input of a user - both of which are proposed to be used for skill assessment and subtask skill classification. Preliminary results collected expert and novice users performing colonoscopy navigation are used to demonstrate this device as a skill assessment tool. A machine-learning model (classification and regression trees) is used for subtask classification of skill and evaluating the most important classification features. A user study demonstrates the effectiveness of this in hand haptic training and assessment tool. We believe that, in the future, this device will enable accelerated skill assessment and training and possible semi-automation of difficult maneuvers.

Child health and well-being are declining in the U.S. with decreases in physical activity and preventive medical visits [15] and increases in child anxiety and depression, and especially since COVID-19. Children’s health-related routines are developed and maintained within families to ensure that health-enhancing behaviors occur. In middle childhood, children have the capacity to be involved in tracking and planning routine health behaviors. However, technologies for family routines do not typically involve children’s input. Additionally, children, parents, and researchers disagree on the extent to which technology should be a part of children’s routines. Thus, it is important to study the role of technology in children’s routines and the extent to which they want autonomy support. The dissertation uses a diary study, interview study, and participatory design sessions with children (ages 8-12) and their parents/grandparents to explore the nature of children’s health-related routines in the digital age to better understand the role of technology in routine development, reconstruction, and performance. This work also aims to uncover how children want technology to support their health and autonomy in the development, maintenance, and performance of their routines. This dissertation will inform the design of family informatics tools that can provide autonomy support, which can positively influence child health and well-being.

OBJECTIVE: We investigated patient experiences with medication- and test-related cost conversations with healthcare providers to identify their preferences for future informatics tools to facilitate cost-sensitive care decisions. MATERIALS AND METHODS: We conducted 18 semistructured interviews with diverse patients (ages 24-81) in a Midwestern health system in the United States. We identified themes through 2 rounds of qualitative coding. RESULTS: Patients believed their providers could help reduce medication-related costs but did not see how providers could influence test-related costs. Patients viewed cost conversations about medications as beneficial when providers could adjust medical recommendations or provide resources. However, cost conversations did not always occur when patients felt they were needed. Consequently, patients faced a "cascade of work" to address affordability challenges. To prevent this, collaborative informatics tools could facilitate cost conversations and shared decision-making by providing information about a patient's financial constraints, enabling comparisons of medication/testing options, and addressing transportation logistics to facilitate patient follow-through. DISCUSSION: Like providers, patients want informatics tools that address patient out-of-pocket costs. They want to discuss healthcare costs to reduce the frequency of unaffordable costs and obtain proactive assistance. Informatics interventions could minimize the cascade of patient work through shared decision-making and preventative actions. Such tools might integrate information about efficacy, costs, and side effects to support decisions, present patient decision aids, facilitate coordination among healthcare units, and eventually improve patient outcomes. CONCLUSION: To prevent a burdensome cascade of work for patients, informatics tools could be designed to support cost conversations and decisions between patients and providers.

Change is an inevitable part of a parent's role, whether due to their child's development, family life, or external events. To understand the information needs of parents navigating change, we studied the effects of the COVID-19 pandemic as a widely experienced disruption in the lives of parents and children. We interviewed 16 parents about their caregiving experience as the COVID-19 pandemic collapsed boundaries between home, school, and work. In particular, we asked about adjustments to behavioral care, or the social learning, supports, and interventions through which children develop social and emotional skills. We focused on parents of children already receiving accommodations and behavioral support from their school, to understand how disruptions in these services affected the role of the parent in meeting their child's individual needs. Applying role theory and the Kübler-Ross change curve, we describe the coping mechanisms that parents used to navigate the stages of change, as well as the information needs that remained unmet, despite their efforts. We discuss how practitioner-initiated and parent-centered supports can be designed around the lived experience of change, by accommodating a parent's capacity to accept and use help at different stages.

Older adults can experience significant changes to their social networks as they age, triggering changes in their social connection practices. In this paper, we extend research on older adults’ connectedness behaviors using a multimodal connectedness framing—that is, how they engage with others across platforms, devices, and modalities. Using the COVID-19 pandemic as a case study, we investigate how older adults navigate a major change or infrastructural breakdown in their social routines. We conducted a survey with 146 U.S.-based older adults (65+), and follow-up interviews with a subset of 23 survey respondents. Findings revealed the resilience and innovation with which older adults adapted their behaviors across multiple modalities to maintain social relationships and playfully connect with others in person and online. Using these findings, we propose that research on designing for aging extend beyond designing for connection in the smart home; we argue for a design agenda that prioritizes designing for smart relationships with the potential to persist across spaces via multimodal connectedness.

Care coordination involves crossing boundaries to connect services in support of the health and well-being of an individual. In this paper, we describe how care coordination depends on the ability to develop a shared understanding of care goals and progress. A distributed group of professionals and non-professional caregivers need to share information to provide consistent and holistic support across settings. We conducted fieldwork comprising of 20 interviews and 51 hours of observation across three different programs focused on children's behavioral health. From this empirical investigation of practices used by distributed care teams, we generated a conceptual framework of shared understanding in care coordination. We identified barriers to shared understanding, as well as nine practices that contribute to its development via two key mechanisms: (1) building relationships across boundaries, and (2) sharing actionable information. We conclude with design implications for enhancing the collaborative practices of members of a care team to cross boundaries despite the barriers that are common in behavioral health and other contexts requiring complex care coordination.

We investigate how families repair communication breakdowns with digital home assistants. We recruited 10 diverse families to use an Amazon Echo Dot in their homes for four weeks. All families had at least one child between four and 17 years old. Each family participated in pre- and post- deployment interviews. Their interactions with the Echo Dot (Alexa) were audio recorded throughout the study. We analyzed 59 communication breakdown interactions between family members and Alexa, framing our analysis with concepts from HCI and speech-language pathology. Our findings indicate that family members collaborate using discourse scaffolding (supportive communication guidance) and a variety of speech and language modifications in their attempts to repair communication breakdowns with Alexa. Alexa's responses also influence the repair strategies that families use. Designers can relieve the communication repair burden that primarily rests with families by increasing digital home assistants' abilities to collaborate together with users to repair communication breakdowns.

In this paper, we describe how we integrated the Affinity Research Group (ARG) model into a 10-week summer research experience for undergraduates (REU) over the last three years. Each summer, ten REU students participated in: an annual two-day team-building orientation; a four day long ramp-up session to learn about REU projects and the skill sets they would need to master; weekly meetings with graduate and faculty mentors to define objectives, deliverables, and progress; and weekly skill development workshops to learn how to conduct research, prepare for future endeavors, and present oneself in professional settings. A total of seven faculty and twelve graduate students participated in ARG model process meetings to ensure students received comparable experiences and facilitated professional development activities. We provide an overview of our REU ARG model experience and reflect on improvements based on faculty mentor, graduate mentor, and undergraduate researchers' experiences.