Design 4 Health Creative toolkits for developing biomedical technology for children with chronic illness copy
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This presentation highlights new methods of approaching inclusive design when developing new technologies for children with chronic illness in design for healthcare. Methods for User Centered Design Design Advocacy for Vulnerable Populations
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Design 4 Health Creative toolkits for developing biomedical technology for children with chronic illness copy
- 1. Barbara Cottrell Trippeer Creative Toolkits for Developing Biomedical Technology for Children with Chronic Illness 1 M.F.A. 2015 in Applied Design Research University of North Texas, Toulouse Graduate School College of Visual Art + Design (CVAD) art.unt.edu/designresearchcenter
- 2. –Herbert Simon, The Sciences of the Artificial, 1996 “Design is devising a course of action aimed at changing an existing situation into a preferred one.” 2
- 4. Medical Smart Garment Systems: Actor Network Theory, Bruno Latour Empowerment through Understanding Monitoring fluctuations in quality of health during cycles of illness or throughout daily activities 4
- 5. –Dana Tapak, Design Considerations, University of Manitoba, 2012 “Don’t speak about us without us.” 5 Design Advocacy: Participatory Design
- 6. Form & Function Digital Natives: ❖ What do they want? ❖ How do they want it? 6
- 7. Barriers to traditional research methods when working with children ❖ Power relationships ❖ Subordination ❖ Stigmatization 7
- 9. Theoretical Foundations Grounded Theory Approach “Emic”perspective 9
- 10. Medical Anthropological Foundation Meaning Centered Approach • Patient Perceptions • Self Knowledge • Awareness of Abilities • Explanatory Models Dr. Christine Kiefer Dr. Arthur Kleinman (Doing Health Anthropology: 2007) 10
- 11. Research Design Methodologies Rapid Ethnographic Assessment Open Ended, In-Depth Interviewing Arts Based Interview Methods 11
- 12. 12 Arts Based Interview Methods “Drawing things together” Bruno Latour, Visualization & cognition, thinking with eyes and hands, 2011
- 14. “Helping language” Isotype • Otto Neurath (1931) 14
- 15. Context Sticker Menu as ISOTYPE Styled Communication System Iconic Metaphors • Meredith Davis (2011) • Don Norman(2007) • Rawley Silver (2001) • Martin Krampen (1999) 15
- 16. 16 Context Sticker Menu Rawley Silver (2001) and Martin Krampen (1991) “Stimulus Drawings”
- 17. 17
- 18. Next Steps: Participatory Design Conclusions • Mitigate Stigmas • Empowerment • Increased Knowledge • Increased Understanding 18
- 19. Many thanks to: Cooks Children’s Hospital Child Life Division University of North Texas & Toulouse Graduate School Design Research Center Michael Gibson Keith Owens 19 barbaratrippeer@my.unt.edu
Editor's Notes
- Good afternoon. My name is Barbara Trippeer, and I am a recent MFA graduate from the University of North Texas in Applied Design Research. The paper which I am presenting today is titled “Creative toolkits for developing biomedical technology for children with chronic illness.
- UNT Design Research program mantra
- Background & Inspiration: Skin in the Game Based on my background as a former apparel designer of Childrenswear, the genesis of this project was to explore new innovations in the emerging wearable technology field. Specifically, this project launched as a means to investigate opportunities for a design intervention, in the form of a new biomedical smart garment health monitoring system, designed to assist children and their families dealing with the affects of chronic illness. Garments as a starting point: People use clothing to either blend in or stand out. Embodying Protection & Identity (Roland Barthes, the Language of Fashion, Semiotics), Garments are used to communicate one’s role in a given situation Additionally, the goals for this smart garment technology would be two-fold: Empowerment through Increased Understanding (via health monitoring) Empowerment for the patient through participating in the design of new technology aimed at their use Understanding on behalf of the patient and their families regarding fluctuations in health during cycles of illness or in daily activities (which may help reduce fear of the unknown, and give patients more control of their circumstances)
- In the design of a biomedical“smart garment”, embedded sensor technology for monitoring is only one component of a larger communication system. For example, the device may have the ability to share information with the parent or teacher’s mobile technology, as well as sending data feeds to the medical provider. The goal here is for the network to be responsive and user friendly- with information tailored to the person on the receiving end. In the case of a child-friendly system, there may even be a gaming component involved, to inspire participation.
- Design Advocacy/ Participatory Design motto
- Research development questions: What do the children want? How do they want it? (To work? To look?)
- However, there may be many challenges in working with children during product development, especially children suffering from chronic illness. For example, Feelings about oneself are often difficult to discuss Subordinate role: Nature of adult/child relationships Power relationships force patient into subservience, with fear of potential domination These issues can create barriers to fluid communication between patient, caregiver, and healthcare provider. In these situations, traditional interview methods may be ineffective, therefore alternative methods must be used to solicit their input. The methods explored for this research propose an “interview toolkit” based upon arts based methods used in child psychology and play therapy.
- The methods explored for this research propose an “interview toolkit” based upon arts based methods used in child psychology and play therapy. This presentation has been an overview regarding new tools for gathering information when working with children who suffer from chronic illness. The purpose of this toolkit is to: Gather info regarding the child’s Needs, Desires, and Aspirations The hope is that this data may inform development of future technology aimed at assisting children living with chronic illness
- In order to answer the questions WHAT do they want & HOW do they want it: Research design: Theoretical In grounded theory, rather than start with a hypothesis, the researcher starts from the ground up. From this perspective, we are looking for the “EMIC” viewpoint, or from the view of the subject or individual already embedded in the culture. (In other words, their view as they look out onto the world, as in, “How does this affect me?”) One of the methods used to gather information using grounded theory is ethnography. Coming from the field of anthropology, Ethnography is the systematic study of people within a certain culture. Ethnography is designed to explore cultural phenomena where the researcher observes society from the point of view of the subject of the study. Ethnography allows researchers to develop empathy for users, by allowing information to flow directly from the user regarding their lived experience. Both with ethnography and grounded theory in the field of sociology, the researcher allows the data to reveal themes and ideas, rather than launching the project with any preconceived hypothesis. For this project, the pilot study has been designed to gather data from field regarding user’s perceptions on: Potential for new biomedical technology Responsiveness to pervasive health monitoring What their needs might be in terms of monitoring In other words, the goal is to gather information regarding the patients’ needs (pain points), desires (what do they want it to do), and aspirations (how do they want it to work).
- In anthropology, the Interpretive or Meaning Centered Approach centers on the experience of illness for the sufferer, by specifically focusing on personal accounts of experience and encompasses all associated meanings, metaphors, and interactions. Using a Meaning Centered Approach, medical anthropologist Christine Kiefer suggests that researchers are better able to grasp their respondent’s Explanatory Model, or the patient’s perception of their illness experience. This technique is often used to enhance communication in patient/provider relationships. The goal in using this technique: Studying patient perceptions may lead to better design interventions to fit their needs. One of the best strategies in aiding patients Recognize own/self knowledge and abilities Empowering patient by allowing them to play a leadership role in their problem solving and health management
- In anthropology, often times researchers have the luxury of embedding themselves in the culture in which they are studying for long periods of time. However, these traditional methods may not be applicable in contemporary societies, and can be especially problematic when vulnerable populations (such as children with chronic illness) are involved. In order to meet some of these challenges, some researchers have begun employing arts-based interview methods to help facilitate interviews with vulnerable populations. Child psychologists and clinicians often supplement their interactions with children through the use of arts based interview methods, because the illustrative nature of artwork allows for more flexible discussion. For example, applying drawing methods in the context of an interview can open up participants’ interpretations of questions, and allow a creative way of interviewing that is responsive to participants’ own meanings and associations.
- Two-fold goal of this data collection method: Learn about child’s daily routine Barriers as a result of illness To meet these goals, I went back to the work of Bruno Latour regarding some of his discussions on Visualization and Cognition, where Latour describes the term “drawing” as in “drawing together” to create shared understandings, such as sharing a private joke. I also researched the findings of cognitive and developmental psychologists Martin Krampen and Rawley Silver. Both Silver and Krampen suggested the use of Projective Drawing Tools or Concept Drawings to help launch conversation and inspire discussion when working with children in interview contexts. These “Stimulus Drawings” can ease some of the tension that informants feel when being asked to “perform” certain tasks, such as drawing during an interview. For this project, Krampen and Silver’s “Stimulus Drawings” have been adapted into “Context Stickers”, based on a menu of simplified icons of items or situations a child may encounter in a typical day.
- The Toolkit has been designed in two parts: a Workbook and Context Stickers Designed as a simplified child’s coloring book, the workbook itself has two sections (to be used in phases over four interviews) First two pages: “All About Me” page “My Condition” page These pages encompass layouts with sections for the child to identify contexts in which they interact, and express what they value most in those situations. Menu format designed to Facilitate in-depth interviews with sick children Aid in discovering info about Daily Routine Learn about what types of activities the child may be involved in Learn about what they enjoy MOST Aid in learning about Barriers they may experience as a result of their condition
- Context Sticker Icons: developed based upon Isotypes: simplified iconographic designs, used to prompt conversation (a la Krampen & Silver’s stimulus drawings) Iconic shortcut for meanings Represent simplified expressions of common items, places, things “Helping language” using pictures to “make connections.” 1930’s Otto Neurath developed isotope system as a universal pictographic system designed to clarify ideas by delimiting concepts down to simplest form of expression. In addition, the simple nature of these icons allows respondents a more flexible format for discussion, as Davis suggests that iconic metaphors allows the “strange” to become more familiar by revealing aspects of known things through comparison with something else. Here, users can suggest additional metaphors they may want to have adapted or incorporated into the menu.
- Goal: Provide child with “thought menu” through which to express themselves, without complex or potentially emotionally traumatizing conversation. The “Context Sticker” is meant to be a flexible menu of simplified icons are meant to represent situations or items a child may encounter in a typical day Activities Locations Artefacts Context Sticker designed system/communication tool The work of Meredith Davis and Don Norman suggests that there can be a “visceral reaction” or emotional response that people have when exposed to images or the things they signify, based upon the appearance of the image, and the recipient’s previous exposure to the items they signify. Here, pattern matching may allow respondents to interpret the images based upon either a positive or negative association.
- Context Sticker Menu Organization: Pictorial elements shown in relationship to one another Down Axis- represents “Contexts of Use” Across Axis- potential items associated with those contexts Ex: Home= Isotype of single story, triangle shaped house Ex: Play: 2 Channels Solo play = computer gaming Group play = array of sports equipment The goal in using these icons is to help facilitate responses to interview questions. To begin with, the interview will launch with open-ended, more generalized questions, before narrowing down into more specific inquiries, such as: “Let’s talk about your daily activities.” “What do you like to do?” (when you are at home? when you are at school?) “What kinds of things do you enjoy? What kinds of games do you like to play?” “Are you involved in any groups?”
- The workbook itself is divided into two parts: An “All About Me” page, followed by the “My Condition Page”, which is designed to help determine where there might be: “Pain Points” : barriers to child’s preferred lifestyle which occur during cycles of illness “How does your illness prevent you from doing the things you like to do?” Method Compare/Contrast with “All About Me” Page Child indicates either how they were personally affected, or via avatar Metaphoric “Friend”
- In conclusions, this presentation has been an overview regarding new tools for gathering information when working with children who suffer from chronic illness. The paper which I just presented was a brief overview of the methods explored for this research. These methods propose an “interview toolkit” based upon arts based methods used in child psychology and play therapy. The purpose of this toolkit is to: Gather info regarding the child’s Needs, Desires, and Aspirations The hope is that this data may inform development of future technology aimed at assisting children living with chronic illness steps: incorporate the participants in participatory design methods, whereby they can contribute to the co-design of products to fit their needs, preferences, and contexts of use. Purpose: Empower child with tools for self-health monitoring Increase awareness Mitigate stigma
- Thank you and acknowledgements: Cook Childrens Hospital in Forth Worth for their partnership University of North Texas Toulouse Graduate School Academic advisors Michael Gibson and Keith Owens