Estrellita

In this article, we describe the design process and principles used in the development of Estrellita, a tool to support parents of preterm infants to track health data. We tested Estrellita in the homes of seven families for 4 months while following seven additional families without Estrellita. The feedback from this trial, including in-depth interviews, surveys, and log analyses, sheds light on how parents can use a mobile data collection tool to enhance their problem-solving processes about their own health and that of their infants, as well as to share with others who support them in this care. In addition to presenting the design of a recording technology for preterm infants and its use in a real-life setting, the results of this research provide a deep understanding of how technology can and should be used to support home care of at-risk patients, in which data capture may be essential.

[1]  Kristina Höök,et al.  Personal informatics and HCI: design, theory, and social implications , 2011, CHI Extended Abstracts.

[2]  Noel Massey,et al.  NICU-2-HOME: supporting the transition to home from the neonatal intensive care unit using a mobile application , 2011, CHI EA '11.

[3]  Marshini Chetty,et al.  Grow and know: understanding record-keeping needs for tracking the development of young children , 2007, CHI.

[4]  Julie A. Kientz,et al.  Embedded capture and access: encouraging recording and reviewing of data in the caregiving domain , 2011, Personal and Ubiquitous Computing.

[5]  Paul Dourish,et al.  Organizational routines, innovation, and flexibility: The application of narrative networks to dynamic workflow , 2011, Int. J. Medical Informatics.

[6]  RICHARD N. SHIFFMAN,et al.  White Paper: Information Technology for Children's Health and Health Care: Report on the Information Technology in Children's Health Care Expert Meeting, September 21-22, 2000 , 2001, J. Am. Medical Informatics Assoc..

[7]  Jeanne Brooks-Gunn,et al.  The effects of experience of early intervention on low birth weight, premature children: The infant health and development program☆ , 1995 .

[8]  Lawrence M. Fagan,et al.  Computer-based documentation: effect on parent and physician satisfaction during a pediatric health maintenance encounter. , 2005, Archives of pediatrics & adolescent medicine.

[9]  Gillian R. Hayes,et al.  Balancing caregiver and clinician needs in a mobile health informatics tool for preterm infants , 2012, 2012 6th International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth) and Workshops.

[10]  Caitlin Lustig,et al.  PatientsLikeMe : Empowerment and Representation in a Patient-Centered Social Network , 2009 .

[11]  John C. Tang,et al.  Field Deployments: Knowing from Using in Context , 2014, Ways of Knowing in HCI.

[12]  荒木 暁子,et al.  日本版 Parenting Stress Index(PSI)の信頼性・妥当性の検討 , 1999 .

[13]  M. K. Campbell,et al.  Factors predictive of follow-up clinic attendance and developmental outcome in a regional cohort of very low birth weight infants. , 1993, American journal of epidemiology.

[14]  Leslie S. Liu,et al.  Improving communication and social support for caregivers of high-risk infants through mobile technologies , 2011, CSCW.

[15]  D. M. Deaves,et al.  An assessment of the value of health education in the prevention of childhood asthma. , 1993, Journal of advanced nursing.

[16]  J. Cox,et al.  Detection of Postnatal Depression , 1987, British Journal of Psychiatry.

[17]  Robert W Grundmeier,et al.  Impact of Clinical Alerts Within an Electronic Health Record on Routine Childhood Immunization in an Urban Pediatric Population , 2007, Pediatrics.

[18]  T. Kamarck,et al.  A global measure of perceived stress. , 1983, Journal of health and social behavior.

[19]  N. Marlow,et al.  Neurologic and developmental disability at six years of age after extremely preterm birth. , 2005, The New England journal of medicine.

[20]  Todd Schwartz,et al.  Correlates of mother-premature infant interactions. , 2007, Research in nursing & health.

[21]  Sunny Consolvo,et al.  ShutEye: encouraging awareness of healthy sleep recommendations with a mobile, peripheral display , 2012, CHI.

[22]  D A Whyte,et al.  A family nursing approach to the care of a child with a chronic illness. , 1992, Journal of advanced nursing.

[23]  Pranee Liamputtong,et al.  Detection of Postnatal Depression , 2011 .

[24]  Chris Barker,et al.  INFORMAL HELPING IN PARTNER AND STRANGER DYADS , 1987 .

[25]  Jonathan Grudin,et al.  Groupware and social dynamics: eight challenges for developers , 1994, CACM.

[26]  Donald J. Patterson,et al.  Supporting the transition from hospital to home for premature infants using integrated mobile computing and sensor support , 2011, Personal and Ubiquitous Computing.

[27]  K. Knafl,et al.  Stigma in childhood chronic illness: a well sibling perspective. , 1991, Pediatric nursing.

[28]  James A. Landay,et al.  Design requirements for technologies that encourage physical activity , 2006, CHI.

[29]  Wanda Pratt,et al.  Healthcare in the pocket: Mapping the space of mobile-phone health interventions , 2012, J. Biomed. Informatics.

[30]  S. Blackburn,et al.  Problems of preterm infants after discharge. , 1995, Journal of obstetric, gynecologic, and neonatal nursing : JOGNN.

[31]  Per Kragh Andersen,et al.  Socioeconomic position and the risk of preterm birth--a study within the Danish National Birth Cohort. , 2008, International journal of epidemiology.

[32]  François Ansermet,et al.  Prematurity, maternal stress and mother-child interactions. , 2004, Early human development.

[33]  K. Gegenfurtner,et al.  Design Issues in Gaze Guidance Under review with ACM Transactions on Computer Human Interaction , 2009 .

[34]  Kevin B. Johnson,et al.  MyMediHealth - Designing a next generation system for child-centered medication management , 2010, J. Biomed. Informatics.

[35]  Alexander J. Rothman,et al.  Shaping perceptions to motivate healthy behavior: the role of message framing. , 1997, Psychological bulletin.

[36]  C. Safran,et al.  Baby CareLink: using the internet and telemedicine to improve care for high-risk infants. , 2000, Pediatrics.

[37]  Barbara A Laraia,et al.  Neighborhood deprivation and preterm birth among non-Hispanic Black and White women in eight geographic areas in the United States. , 2007, American journal of epidemiology.

[38]  M. Greenberg,et al.  Effects of stress and social support on mothers and premature and full-term infants. , 1983, Child development.

[39]  Meng-Chieh Chiu,et al.  Playful bottle: a mobile social persuasion system to motivate healthy water intake , 2009, UbiComp.

[40]  John Zimmerman,et al.  Opportunities to support parents in managing their children's health , 2008, CHI Extended Abstracts.

[41]  Gary Wolf.  Gary Wolf: The quantified self: (609302010-001) , 2010 .

[42]  Celementina R. Russo,et al.  The Quantified Self , 2015, HCI.

[43]  Eileen Wood,et al.  All about me: Disclosure in online social networking profiles: The case of FACEBOOK , 2010, Comput. Hum. Behav..

[44]  Lex Wijnroks,et al.  Maternal recollected anxiety and mother–infant interaction in preterm infants , 1999 .

[45]  Gillian R. Hayes.  The relationship of action research to human-computer interaction , 2011, TCHI.

[46]  Ann Maxwell Eward.  Toward an integrated medicine : classics from Psychosomatic medicine, 1959-1979 , 1995 .

[47]  R. R. Abidin,et al.  Parenting Stress Index , 2011 .

[48]  Anne Greenough,et al.  Long-Term Pulmonary Outcome in the Preterm Infant , 2008, Neonatology.

[49]  Jodi Forlizzi,et al.  A stage-based model of personal informatics systems , 2010, CHI.

[50]  Frank R Greer,et al.  Long-term Adverse Outcomes of Low Birth Weight, Increased Somatic Growth Rates, and Alterations of Body Composition in the Premature Infant: Review of the Evidence , 2007, Journal of pediatric gastroenterology and nutrition.

[51]  M. Swan.  Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking , 2009, International journal of environmental research and public health.

[52]  Gregory D. Abowd,et al.  Baby steps: evaluation of a system to support record-keeping for parents of young children , 2009, CHI.

[53]  David Olds.  Progress in Improving the Development of Low Birth Weight Newborns , 2006, Pediatrics.

[54]  Michael E. Labhard,et al.  Mobile Therapy: Case Study Evaluations of a Cell Phone Application for Emotional Self-Awareness , 2010, Journal of medical Internet research.

[55]  J. Neu,et al.  Gastrointestinal development and meeting the nutritional needs of premature infants. , 2007, The American journal of clinical nutrition.

[56]  Russell Wilkins,et al.  Effect of neighbourhood income and maternal education on birth outcomes: a population-based study , 2006, Canadian Medical Association Journal.

[57]  Sean A. Munson,et al.  Exploring goal-setting, rewards, self-monitoring, and sharing to motivate physical activity , 2012, 2012 6th International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth) and Workshops.

[58]  S. Cockcroft,et al.  How can family centred care be improved to meet the needs of parents with a premature baby in neonatal intensive care , 2012 .

[59]  Gregory D. Abowd,et al.  Charting past, present, and future research in ubiquitous computing , 2000, TCHI.