A Robot Avatar: Easier Access to Education and Reduction in Isolation?

This paper presents a qualitative study of deployment and use of a robot as a sick child’s avatar at school. Many children and youth suffer from a range of chronic illnesses that make them, often for long stretches of time, deprived of normal education and social life. The participants in our study are adolescents who have been diagnosed with, and suffered from, Myalgic Encephalomyelitis (ME/CFS) for at least one year. They attend school typically between 1 – 3 hours per week, and the robot-avatar is intended as a way for them to extend the time spent in the classroom and to increase their social presence. The paper discusses tools made to help us understand these young people and their relation to technology (concerning their physical and mental condition) and their connectedness to others (friends, family, teachers and other relevant connections). Further, the paper reports on experiences with the use of robot-avatars by participants, their parents, and their schoolteachers.

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

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

[3]  Jeremy Roche,et al.  Extending the Social Exclusion Debate , 2003 .

[4]  J. Perrin,et al.  The rise in chronic conditions among infants, children, and youth can be met with continued health system innovations. , 2014, Health affairs.

[5]  Alma L. Culén,et al.  Later Life: Living Alone, Social Connectedness and ICT , 2015, HCI.

[6]  Janet C. Read,et al.  Climbing the cool wall: exploring teenage preferences of cool , 2012, CHI EA '12.

[7]  K. Lorig,et al.  Self-management education: History, definition, outcomes, and mechanisms , 2003, Annals of behavioral medicine : a publication of the Society of Behavioral Medicine.

[8]  William Odom,et al.  Prototype to Research Product , 2016 .

[9]  Eli Blevis,et al.  Understanding why we preserve some things and discard others in the context of interaction design , 2009, CHI.

[10]  Alma Leora Culén,et al.  The Digital Life of Vulnerable Users: Designing with Children, Patients, and Elderly , 2013, SCIS.

[11]  L. Rangel,et al.  Impairment and coping in children and adolescents with chronic fatigue syndrome: a comparative study with other paediatric disorders. , 2004, Journal of child psychology and psychiatry, and allied disciplines.

[12]  Anselm L. Strauss,et al.  Unending work and care: Managing chronic illness at home. , 1989 .

[13]  Martin Offringa,et al.  Defining chronic diseases and health conditions in childhood (0–18 years of age): national consensus in the Netherlands , 2008, European Journal of Pediatrics.

[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]  K. Lorig,et al.  Patient Self-Management: A Key to Effectiveness and Efficiency in Care of Chronic Disease , 2004, Public health reports.

[16]  G. Eysenbach,et al.  Social Media: A Review and Tutorial of Applications in Medicine and Health Care , 2014, Journal of medical Internet research.

[17]  Dedra Buchwald,et al.  Chronic fatigue syndrome: a review. , 2003, The American journal of psychiatry.

[18]  A. Culén,et al.  Sense-Making in Complex Healthcare Domains: The Role of Technology in Every Day Lives of Youth Suffering from ME/CFS , 2016, eTELEMED 2016.

[19]  Frank Vetere,et al.  Exploring ambient technology for connecting hospitalised children with school and home , 2014, Int. J. Hum. Comput. Stud..

[20]  Kirsty Best,et al.  THE NECESSITY OF CONTROL FOR COMPUTER AND INTERNET USERS WITH MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME , 2013 .

[21]  Stephanie Butler,et al.  Virtual Space , 2015 .

[22]  Alma Leora Culén,et al.  Designing with Vulnerable Children: A Researcher's Perspective , 2014 .

[23]  L. Jason,et al.  The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS. , 2009, Patient education and counseling.

[24]  L. Hooper,et al.  BMC Public Health BioMed Central Research article , 2009 .

[25]  J. Clarke,et al.  The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. , 2003, Social science & medicine.

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

[27]  E. Dowsett.  Long-Term Sickness Absence Due to ME/CFS in UK Schools , 1997 .

[28]  Kirsty Best,et al.  Second life avatars as extensions of social and physical bodies in people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome , 2013 .

[29]  Deborah Bambini,et al.  Death of a Lifestyle: The Effects of Social Support and Healthcare Support on the Quality of Life of Persons With Fibromyalgia and/or Chronic Fatigue Syndrome , 2004, Orthopedic nursing.

[30]  Anna-Liisa Närvänen,et al.  Women’s Experiences of Stigma in Relation to Chronic Fatigue Syndrome and Fibromyalgia , 2002, Qualitative health research.

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