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Addressing Cognitive and Emotional Barriers in Parent-Clinician Addressing Cognitive and Emotional Barriers in Parent-Clinician Communication through Behavioral Visualization Webtools Ha-Kyung Kong Karrie Karahalios Seattle University & UIUC University of Illinois at Urbana-Champaign Seattle, WA USA Champaign, IL USA [email protected] [email protected] ABSTRACT and emotional barriers [39]. In this work, we present behav- Effective communication between clinicians and parents of ioral visualization as a tool for addressing these challenges in young children with developmental delays can decrease par- parent-clinician communication on developmental delays. ents’ anxiety, help them handle bad news, and improve their Previously, research on visualization in healthcare has mainly adherence to proposed interventions. However, parents have focused on using visualization for analysis. However, newer reported dissatisfaction regarding their current communication research findings show that visualization could also be used with clinicians, and they face cognitive and emotional chal- for parent-clinician communication [16, 30]. Clinicians sug- lenges when discussing their child’s developmental delays. In gested using visualization as a catalyst for discussions between this paper, we present visualization as a facilitator of parent- clinicians and parents, and as a mechanism for teaching and clinician communication and how it could address existing coaching parents how to implement interventions at home communication challenges. Parents and clinicians anticipated [16]. This may fulfill some of the current needs of parents visualization webtools would aid their communication by help- as they reported desiring more support with obtaining infor- ing parents gain a better understanding of their child, acting mation regarding their children’s disability or challenging as objective evidence, and highlighting the strength of the behaviors. In another study on parent-clinician communica- child as well as important medical concepts. In addition, vi- tion [20], clinicians felt that well-designed graphics could aid sualization can act as a longitudinal record, helping parents communication as they were less intimidating than a num- track, explore, and share their child’s developmental progress. ber rating or a spreadsheet. The reasoning was that visual Finally, we propose visualization as a tool to guide parents in information helped parents feel at ease, and thus would elicit their transition from feeling emotional and disempowered to more honest feedback and more parent participation in the advocating with confidence. conversation. However, existing research on the role of visual- ization in parent-clinician communication has focused on the Author Keywords clinicians’ perception, and no research has been done on the Visualization; developmental delays; clinical communication. parental perspective of the issue to our knowledge. To address this gap, we interviewed both parents and clinicians on the CCS Concepts anticipated benefits and challenges that emerge when using •Human-centered computing ! Information visualiza- timeline visualization webtools in their parent-clinician conver- tion; sations. While we did not test these tools during synchronous communication, interview results revealed their potential for INTRODUCTION addressing specific communication barriers. Effective parent-clinician communication is central in estab- lishing a positive parent-clinician relationship [10, 40], which In this paper, we present the results from our study on how in turn leads to an increased adherence to clinician’s advice behavioral visualization webtools can address emotional and [27]. However, evidence suggests that parents are often dis- cognitive barriers in parent-clinician communication. Our con- satisfied with the amount or quality of information shared by tributions are three-fold. First, we add parents’ voices to the clinicians during a consultation [23] or after a diagnosis [29]. discussion on visualization in parent-clinician conversations. Discussions that revolve around a child’s developmental de- Even if visualizations are appreciated by clinicians, their ef- lays are especially challenging as parents may face cognitive fectiveness in clinical communication will be limited if they do not meet the parents’ needs as parents are one of the pri- Permission to make digital or hard copies of all or part of this work for personal or mary stakeholders. Our study results show that while some classroom use is granted without fee provided that copies are not made or distributed clinicians were skeptical of parents’ interest in and compre- for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than ACM hension of visualizations, parents in our study were enthusias- must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, tic about the use of visualization in their conversations with to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected]. clinicians, and they could correctly infer information from CHI ’20, April 25–30, 2020, Honolulu, HI, USA. visualizations after watching a brief introductory video. Vi- Copyright is held by the owner/author(s). Publication rights licensed to ACM. sualization could also elicit questions from the parents and ACM ISBN 978-1-4503-6708-0/20/04 ...$15.00. https://doi.org/10.1145/3313831.3376181 lead to more parent-centered conversations. Secondly, we family resilience and to build a constructive parent-clinician present how visualization could address cognitive and emo- relationship [3]. tional barriers that arise conversations about developmental delays. Parents and clinicians reported that visualization could One challenge in parent-clinician communication on devel- facilitate their conversation through addressing 1) the emo- opmental delays is providing an appropriate amount of in- tional barriers by presenting children’s behaviors to parents in formation. While most parents feel underinformed, others a more supportive and objective manner and 2) the cognitive struggle with “information overload,” especially at the time barriers by acting as an anchor for conversation and presenting of diagnosis [10]. Whether for the lack or the surplus of in- important developmental concepts or patterns that are hard to formation, parents can find it hard to understand their child’s convey through words or text. Thirdly, we discuss how parents’ condition and often feel disempowered [11]. Another chal- lenge in parent-clinician communication is that parents may trust in visualization can be a double-edged sword in clinical resist information when the information entails negative im- communication, and propose ways that parents can benefit plications [9]. While temporary denial can act as a positive from visualization in their transition from feeling emotional coping mechanism [35], continued denial may lead to prob- and disempowered to advocating with confidence. lematic consequences such as refusing treatment. In Tetzlaff’s study on parents of children with cancer, 97% of the parents RELATED WORK indicated that they “wanted to know everything they could Visualization is becoming a popular form of communicating about the disease” yet 31% did not “want to hear about the information and for analyzing data. While the clinical use of bad things” [39]. These statements seem at odds against one data visualization is on the rise with the increased use of elec- another, but they reflect the internal struggle of a parent be- tronic health records (EHR) and patient provided information, tween their cognitive and emotional needs. With this in mind, health-care professionals have focused on the analytic role of clinicians should present information in a supportive manner visualization. This traditional focus has left open the question to avoid increasing parents’ anxiety or insecurity. Based on of how visualization plays a communicative role in clinical all these previous findings, a tool that can address parents’ contexts. The central objective of our work is to explore this initial emotions as well as their informational needs would communicative role of visualization, specifically in the context immensely benefit parent-clinician communication. of parent-clinician communication. In the following section, we first navigate the current state of parent-clinician commu- Visualization in Healthcare nication. Then we present current work on visualization in Data visualization techniques improve the exploration and un- health-care and visualization for communication. derstanding of personal, clinical, and public health information [38]. Researchers have examined health-related visualizations Parent-Clinician Communication for personal medical histories [33, 41], patient treatment pat- Effective communication is essential in clinical settings as terns and outcomes [26], and decision making in public health communication is strongly correlated with patient satisfaction [1]. Many of behavioral visualization tools were created to aid [43] and better patient adherence [44]. Furthermore, most of healthcare professionals in clinical analysis. Abaris, created the complaints made by patients deal with communication by Kientz et al., provided an intuitive interface for inputting problems rather than the competency of the clinician [25, 36], behavioral data during a therapy session and presented this and miscommunication
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