Mediating Relatedness for Adolescents with ME: Reducing Isolation through Minimal Interactions with a Robot Avatar

This paper discusses how a networked object in the form of a small robot designed to mediate experiences of care, social connectedness, and intimacy, was used by adolescents with Myalgic Encephalomyelitis, a condition that reduces their normal functioning, including the ability to socialize. A study with nine adolescents, each using the robot for about a year in average, revealed that it was largely effective at mediating their everyday experiences of relatedness, triggering productive new habits and social practices. We interpret these findings to propose a set of strategies for designing technologies that support relatedness while requiring minimal interactivity and engagement. Balance, extension-of-self, coolness, and acts-of-care, in addition to commonly used physicalness, expressivity and awareness, enable the robot to extend the adolescents' ability to relate to others, people and animals.

[1]  William W. Gaver What should we expect from research through design? , 2012, CHI.

[2]  Nervo Verdezoto,et al.  Beyond the Individual: The Contextual Wheel of Practice as a Research Framework for Sustainable HCI , 2015, CHI.

[3]  E. Shove,et al.  Consumers, Producers and Practices , 2005 .

[4]  Janet C. Read,et al.  Understanding and designing cool technologies for teenagers , 2011, CHI EA '11.

[5]  Jacob O. Wobbrock,et al.  From User-Centered to Adoption-Centered Design: A Case Study of an HCI Research Innovation Becoming a Product , 2015, CHI.

[6]  Janet C. Read,et al.  Seven Years after the Manifesto: Literature Review and Research Directions for Technologies in Animal Computer Interaction , 2018, Multimodal Technol. Interact..

[7]  Joseph Kaye,et al.  Communicating intimacy one bit at a time , 2005, CHI Extended Abstracts.

[8]  Erik Stolterman,et al.  Temporality in interaction design , 2011, DPPI.

[9]  John Zimmerman,et al.  Research Through Design in HCI , 2014, Ways of Knowing in HCI.

[10]  Shaowen Bardzell,et al.  Technology-mediated parent-child intimacy: designing for ecuadorian families separated by migration , 2011, CHI EA '11.

[11]  Patrick van der Duin,et al.  Toward “Responsible Foresight”: Developing Futures that Enable Matching Future Technologies with Societal Demands: , 2019 .

[12]  Alessandro Soro,et al.  Technology Individuation: The Foibles of Augmented Everyday Objects , 2017, CHI.

[13]  Elizabeth Shove,et al.  Products and Practices: Selected Concepts from Science and Technology Studies and from Social Theories of Consumption and Practice1 , 2007, Design Issues.

[14]  Molly Brown,et al.  Contrasting Case Definitions for Chronic Fatigue Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Myalgic Encephalomyelitis , 2012, Evaluation & the health professions.

[15]  William W. Gaver,et al.  Feather, Scent, and Shaker: Supporting Simple Intimacy , 1996 .

[16]  Jenny Waycott,et al.  Ethical Encounters in HCI: Research in Sensitive Settings , 2015, CHI Extended Abstracts.

[17]  Richie Poulton,et al.  Socially isolated children 20 years later: risk of cardiovascular disease. , 2006, Archives of pediatrics & adolescent medicine.

[18]  Johan Redström,et al.  Form and the computational object , 2005, Digit. Creativity.

[19]  Albert Borgmann Review of Peter-Paul Verbeek's What Things Do: Philosophical Reflections on Technology, Agency, and Design , 2005 .

[20]  E. Deci,et al.  Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. , 2000, The American psychologist.

[21]  Anne Farmer,et al.  Prevalence of chronic disabling fatigue in children and adolescents , 2004, British Journal of Psychiatry.

[22]  Daan van Eijk,et al.  Practices as a unit of design , 2013, ACM Trans. Comput. Hum. Interact..

[23]  Anna Katherine Sheridan Exploring E-learning provision for Children with ME in Scotland , 2013 .

[24]  Carman Neustaedter,et al.  Human Proxies for Remote University Classroom Attendance , 2016, CHI.

[25]  Erik Stolterman,et al.  Form and materiality in interaction design: a new approach to HCI , 2011, CHI Extended Abstracts.

[26]  Katie Brittain,et al.  An Age-Old Problem: Examining the Discourses of Ageing in HCI and Strategies for Future Research , 2015, TCHI.

[27]  P. Verbeek COVER STORYBeyond interaction , 2015 .

[28]  Frank Twisk,et al.  Dutch Health Council Advisory Report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the Wrong Turn , 2018, Diagnostics.

[29]  Alma Leora Culén,et al.  Experiences with a Research Product: A Robot Avatar for Chronically Ill Adolescents , 2017 .

[30]  Sarah Diefenbach,et al.  All You Need is Love: Current Strategies of Mediating Intimate Relationships through Technology , 2012, TCHI.

[31]  Jonas Löwgren Interaction design, research practices and design research on the digital materials , 2015 .

[32]  Mika Pantzar,et al.  The Dynamics of Social Practice: Everyday Life and how it Changes , 2012 .

[33]  Martin R. Gibbs,et al.  Using Cultural Probes to Explore Mediated Intimacy , 2004, Australas. J. Inf. Syst..

[34]  Alma Leora Culén,et al.  Designing Interactive Technologies with Teenagers in a Hospital Setting , 2016 .

[35]  Ron Wakkary,et al.  Intersecting with Unaware Objects , 2015, Creativity & Cognition.

[36]  Robert Dantzer,et al.  The High Costs of Low-Grade Inflammation: Persistent Fatigue as a Consequence of Reduced Cellular-Energy Availability and Non-adaptive Energy Expenditure , 2018, Front. Behav. Neurosci..

[37]  I. Mena,et al.  Myalgic encephalomyelitis: International Consensus Criteria , 2011, Journal of internal medicine.

[38]  Manfred Tscheligi,et al.  SIG: Chatbots for Social Good , 2018, CHI Extended Abstracts.

[39]  L. Jason,et al.  Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document , 2012, Disability and rehabilitation.

[40]  P. Verbeek What Things Do: Philosophical Reflections on Technology, Agency, and Design , 2005 .

[41]  Carman Neustaedter,et al.  In Your Eyes: Anytime, Anywhere Video and Audio Streaming for Couples , 2017, CSCW.

[42]  Amy C. Hartl,et al.  Understanding loneliness during adolescence: developmental changes that increase the risk of perceived social isolation. , 2013, Journal of adolescence.

[43]  Maja van der Velden,et al.  Participatory Design and Design for Values , 2015 .

[44]  Charith Lasantha Fernando,et al.  Huggy pajama: a parent and child hugging communication system , 2009, IDC.

[45]  Kazuaki Tanaka,et al.  Remote handshaking: touch enhances video-mediated social telepresence , 2014, CHI.

[46]  Alma Leora Culén,et al.  Situated Techno-Cools: factors that contribute to making technology cool in a given context of use , 2012, PsychNology J..

[47]  Marc Hassenzahl,et al.  Technology-Mediated Relationship Maintenance in Romantic Long-Distance Relationships: An Autoethnographical Research through Design , 2020, Hum. Comput. Interact..

[48]  Sumit Pandey,et al.  Eyespy: designing counterfunctional smart surveillance cameras , 2018, NordiCHI.

[49]  Peter C. Wright,et al.  The prayer companion: openness and specificity, materiality and spirituality , 2010, CHI.

[50]  Stephen Lindsay,et al.  Special topic: Designing for and with vulnerable people , 2014, INTR.

[51]  Erik Stolterman,et al.  The Meaning of Interactivity—Some Proposals for Definitions and Measures , 2017, Hum. Comput. Interact..

[52]  Carman Neustaedter,et al.  Geocaching with a Beam: Shared Outdoor Activities through a Telepresence Robot with 360 Degree Viewing , 2018, CHI.

[53]  Richard Banks,et al.  From Research Prototype to Research Product , 2016, CHI.

[54]  Joseph Kaye,et al.  I just clicked to say I love you: rich evaluations of minimal communication , 2006, CHI Extended Abstracts.