From Personal Informatics to Family Informatics: Understanding Family Practices around Health Monitoring

by | Feb 25, 2017 | Research Publications

Author(s):

  • Charlotte P Lee
  • Steve Poltrock
  • Louise Barkhuus
  • Marcos Borges
  • Wendy Kellogg
  • Laura R Pina
  • Sang-Wha Sien
  • Teresa Ward
  • Jason C Yip
  • Sean A Munson
  • James Fogarty
  • Julie A Kientz

Abstract:

In families composed of parents and children, the health of parents and children is often interrelated: the health of children can have an impact on the health of parents, and vice versa. However, the design of health tracking technologies typically focuses on individual self-tracking and self-management, not yet addressing family health in a unified way. To examine opportunities for family-centered health informatics, we interviewed 14 typically healthy families, interviewed 10 families with a child with a chronic condition, and conducted three participatory design sessions with children aged 7 to 11. Although we identified similarities between family-centered tracking and personal self-tracking, we also found families want to: (1) identify ripple effects between family members; (2) consider both caregivers and children as trackers to support distributing the burdens of tracking across family members; and (3) identify and pursue health guidelines that consider the state of their family (e.g., specific health guidelines for families that include a child with a chronic condition). We contribute to expanding the design lens from self-tracking to family-centered health tracking.

Documentation:

https://doi.org/10.1145/2998181.2998362

References:
  1. Joanna Abraham and Madhu C. Reddy. 2010. Challenges to inter-departmental coordination of patient transfers: a workflow perspective. International Journal of Medical Informatics 79, 2: 112–22.
  2. Barry Brown, Alex S. Taylor, Shahram Izadi, Abigail Sellen, Joseph ‘Jofish’ Kaye, and Rachel Eardley. 2007. Locating family values: a field trial of the whereabouts clock. Proceedings of the International Conference on Ubiquitous Computing (UbiComp ’07), SpringerVerlag, Berlin, Heidelberg, 354–371
  3. CDC, 20016. http://www.cdc.gov/aging/caregiving/facts.htm
  4. Yunan Chen, Victor Ngo, and Sun Young Park. 2013. Caring for caregivers: designing for integrality. Proceedings of the ACM Conference on Computer Supported Cooperative Work (CSCW ’13), 91–102.
  5. Eun Kyoung Choe, Bongshin Lee, Matthew Kay, Wanda Pratt, and Julie A. Kientz. 2015. SleepTight. Proceedings of the ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp ’15), 121–132.
  6. Eun Kyoung Choe. 2014. Designing Self-Monitoring Technology to Promote Data Capture and Reflection. PhD Dissertation. The Information School, University of Washington, Seattle Washington
  7. Chia-Fang Chung, Kristin Dew, Allison Cole, Jasmine Zia, James Fogarty, Julie A. Kientz, and Sean A. Munson. 2016. Boundary Negotiating Artifacts in Personal Informatics: Patient-Provider Collaboration with Patient-Generated Data. Proceedings of the ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW ’16), 770–786.
  8. Nathalie Colineau and Cécile Paris. 2011. Motivating reflection about health within the family: the use of goal setting and tailored feedback. User Modeling and User-Adapted Interaction 21, 5: 341–376.
  9. Nathalie Colineau and Cécile Paris. 2011. Family vs. individual profiles in a health portal: strengths and weaknesses. Proceedings of Conference on HumanComputer Interaction (BCS-HCI ’11), 321–330.
  10. Sunny Consolvo, Katherine Everitt, Ian Smith, and James A. Landay. 2006. Design requirements for technologies that encourage physical activity. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’06), 457–466.
  11. Sunny Consolvo, Predrag Klasnja, David W. McDonald, et al. 2008. Flowers or a robot army? Proceedings of the International Conference on Ubiquitous Computing (UbiComp ’08), 54–46.
  12. Felicia Cordeiro, Elizabeth Bales, Erin Cherry, and James Fogarty. 2015. Rethinking the Mobile Food Journal. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’15), 3207–3216.
  13. S. Cortese. 2012. The neurobiology and genetics of attention-deficit/hyperactivity disorder (ADHD): what every clinician should know. European Journal of Pediatric Neurology, 16, 5: 422–433.
  14. Ronald E. Dahl and Mona El-Sheikh. 2007. Considering sleep in a family context: Introduction to the special issue. Journal of Family Psychology 21, 1: 1–3.
  15. Scott Davidoff, John Zimmerman, and Anind K. Dey. How routine learners can support family coordination. 2010. Proceedings of the SIGCHI Conference on Human Factors in Computing System (CHI’10), 2461–2470.
  16. Sharon Denham, Sandra Eggenberger, Patricia Young, and Norma Krumwiede. 2015. Family-Focused Nursing Care. FA Davis.
  17. Allison Druin. 1999. Cooperative inquiry: developing new technologies for children with children. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’99), 592–599.
  18. Allison Druin. 2002. The role of children in the design of new technology. Behaviour and Information Technology 21, 1:1–25.
  19. Daniel A. Epstein, Bradley H. Jacobson, Elizabeth Bales, David W. McDonald, and Sean A. Munson. 2015. From “nobody cares” to “way to go!”: A Design Framework for Social Sharing in Personal Informatics. Proceedings of the ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW ’15), 1622–1636.
  20. Daniel A. Epstein, An Ping, James Fogarty, and Sean A. Munson. 2015. A lived informatics model of personal informatics. Proceedings of the ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp ’15), 731–742.
  21. Daniel A. Epstein, Monica Caraway, Chuck Johnston, An Ping, James Fogarty, and Sean A. Munson. 2016. Beyond Abandonment to Next Steps: Understanding and Designing for Life after Personal Informatics Tool Use. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’16), 1109–1113.
  22. Geraldine Fitzpatrick and Gunnar Ellingsen. 2012. A Review of 25 Years of CSCW Research in Healthcare: Contributions, Challenges and Future Agendas. Computer Supported Cooperative Work, 22, 4: 609–665.
  23. Jon E. Froehlich, Eric Larson, Tim Campbell, Conor Haggerty, James Fogarty, and Shwetak N. Patel. 2009. HydroSense: Infrastructure-mediated single-point sensing of whole-home water activity. Proceedings of the International Conference on Ubiquitous Computing (UbiComp ’09), 235–244.
  24. Peter J. Gowdie and M. L. Shirley. 2012. Juvenile idiopathic arthritis. Pediatric Clinics of North America 59, 2: 301–327.
  25. Andrea Grimes, Desney Tan, and Dan Morris. 2009. Toward technologies that support family reflections on health. Proceedings of the ACM International Conference on Supporting Group Work (GROUP ’09), 311–320.
  26. Mona Leigh Guha, Allison Druin, Gene Chipman, Jerry Alan Fails, Sante Simms, and Allison Farber. 2004. Mixing ideas. Proceeding of the Conference on Interaction Design and Children (IDC ’04), 35–42.
  27. Gillian R. Hayes, Karen G. Cheng, Sen H. Hirano, Karen P. Tang, Marni S. Nagel, and Dianne E. Baker. 2014. Estrellita. ACM Transactions on ComputerHuman Interaction 21, 3: 1–28.
  28. Alexis Hiniker, Sarita Y. Schoenebeck, and Julie A. Kientz. 2016. Not at the Dinner Table: Parents’ and Children’s Perspectives on Family Technology Rules. Proceedings of the ACM Conference on ComputerSupported Cooperative Work & Social Computing (CSCW ’16), 1376–1389.
  29. Karen Holtzblatt, Jessamyn Burns Wendell, and Shelley Wood. 2004. Rapid Contextual Design: A How-to Guide to Key Techniques for User-Centered Design. Elsevier.
  30. Matthew K. Hong, Lauren Wilcox, Daniel Machado, Thomas A. Olson, and Stephen F. Simoneaux. 2016. Care Partnerships: Toward Technology to Support Teens’ Participation in Their Health Care. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’16), 5337–5349.
  31. Maia L. Jacobs, James Clawson, and Elizabeth D. Mynatt. 2014. Cancer navigation: opportunities and challenges for facilitating the breast cancer journey. Proceedings of the ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW ’14), 1467–1478.
  32. Maia L. Jacobs, James Clawson, and Elizabeth D. Mynatt. 2015. Comparing Health Information Sharing Preferences of Cancer Patients, Doctors, and Navigators. Proceedings of the ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW ’15), 808–818.
  33. Tejinder K. Judge and Carman Neustaedter. 2014. Studying and Designing Technology for Domestic Life: Lessons from Home. Morgan Kaufmann Publishers Inc., San Francisco, CA, USA.
  34. Matthew Kay, Eun Kyoung Choe, Jesse Shepherd, Benjamin Greenstein, Nathaniel Watson, Sunny Consolvo. Julie A. Kientz. 2012. Lullaby: a capture & access system for understanding the sleep environment. Proceedings of the ACM Conference on Ubiquitous Computing (UbiComp ’12), 226–234.
  35. Julie A. Kientz, Gillian R. Hayes, Tracy L. Westeyn, Thad Starner, and Gregory D. Abowd. 2007. Pervasive computing and autism: Assisting caregivers of children with special needs. IEEE Pervasive Computing 1: 28–35.
  36. Julie A. Kientz, Rosa I. Arriaga, and Gregory D. Abowd. 2009. Baby steps. Proceedings of the International Conference on Human factors in Computing Systems (CHI ’09), 1713–1716.
  37. Stephen Kimani, Shlomo Berkovsky, Greg Smith, Jill Freyne, Nilufar Baghaei, and Dipak Bhandari. 2010. Activity awareness in family-based healthy living online social networks. Proceedings of the International Conference on Intelligent User Interfaces (IUI ’10), 337–340.
  38. Stephen Kimani, Nilufar Baghaei, Jill Freyne, Shlomo Berkovsky, Dipak Bhandari, and Greg Smith. 2010. Gender and role differences in family-based healthy living networks. Proceedings of the International Conference Extended Abstracts on Human Factors in Computing Systems (CHI EA ’10), 4219–4224.
  39. Amanda Lazar, Christian Koehler, Joshua Tanenbaum, and David H. Nguyen. 2015. Why we use and abandon smart devices. Proceedings of the ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp ’15), 635–646.
  40. Ian Li, Anind Dey, and Jodi Forlizzi. 2010. A stagebased model of personal informatics systems. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’10), 557–566.
  41. J. Lin, Lena Mamykina, Silvia Lindtner, Gregory Delajoux, and H. Strub. 2006. Fish-n-Steps: Encouraging physical activity with an interactive computer game. Proceedings of the International Conference on Ubiquitous Computing (UbiComp ’06), 261–278.
  42. Leslie S. Liu, Sen H. Hirano, Monica Tentori, Karen G. Cheng, Sheba George, Sun Young Park, Gillian R. Hayes. 2011. Improving communication and social support for caregivers of high-risk infants through mobile technologies. Proceedings of the ACM Conference on Computer Supported Cooperative Work (CSCW ’11), 475–482.
  43. Lena Mamykina, Elizabeth Mynatt, Patricia Davidson, and Daniel Greenblatt. 2008. MAHI. Proceeding of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’08), 477–489.
  44. Clara Mancini, Yvonne Rogers, Keerthi Thomas, Adam N. Joinson, Blaine A. Price, Arosha K. Bandara, Lukasz Jedrzejczyk, and Bashar Nuseibeh. 2011. In the best families: tracking and relationships. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’11), 2419–2428.
  45. Andrew D. Miller, Sonali R. Mishra, Logan Kendall, Shefali Haldar, Ari H. Pollack, and Wanda Pratt. 2016. Partners in Care: Design Considerations for Caregivers and Patients During a Hospital Stay. Proceedings of the ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW ’16), 756–769.
  46. Tricia Miller and M. Robin DiMatteo. 2016. Importance of Family/social Support and Impact on Adherence to Diabetic Therapy. Diabetes, Metabolic Syndrome and Obesity: Targets and Therapy, 6: 421–426.
  47. Salvador Minuchin, Wai-Yung Lee, and George M. Simon. 2006. Mastering Family Therapy: Journeys of Growth and Transformation. John Wiley & Sons.
  48. Sean A Munson and Sunny Consolvo. 2012. Exploring Goal-setting, Rewards, Self-monitoring, and Sharing to Motivate Physical Activity. Proceedings of the International Conference on Pervasive Computing Technologies for Healthcare, IEEE, 25–32.
  49. Sean A. Munson, Erin Krupka, Caroline Richardson, and Paul Resnick. 2015. Effects of Public Commitments and Accountability in a Technology-Supported Physical Activity Intervention. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’15), 1135–1144.
  50. Gina Neff and D. Nafus, 2016. The Self-Tracking. MIT Press.
  51. Francisco Nunes and Geraldine Fitzpatrick. Self-care technologies and collaboration. 2015. International Journal of Human-Computer Interaction. 31, 12: 869881.
  52. Carman Neustaedter, A. J. Bernheim Brush, and Saul Greenberg. 2009. The calendar is crucial. ACM Transactions on Computer-Human Interaction 16, 1: 1–48.
  53. Carman Neustaedter and A. J. Bernheim Brush. 2006. “LINC-ing” the family. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’06), 141–153.
  54. Ellen Nordal, Marek Zak, Kristiina Aalto, Lillemor Berntson, Anders Fasth, Troels Herlin, Pekka Lahdenne, Susan Nielsen, Bjørn Straume, and Marite Rygg. 2011. Ongoing disease activity and changing categories in a long-term nordic cohort study of juvenile idiopathic arthritis. Arthritis & Rheumatism 63, 9: 2809–2818.
  55. Tonya M. Palermo, Cecelia R. Valrie, and Cynthia W. Karlson. Family and Parent Influences on Pediatric Chronic Pain: A Developmental Perspective. 2016. The American Psychologist 69, 2: 142–152.
  56. Christine W. Paine, Natalie B. Stollon, Matthew S. Lucas, Lauren D. Brumley, Erika S. Poole, Tamara Peyton, Anne W. Grant, Sophia Jan, Symme Trachtenberg, Miriam Zander, Petar Mamula, Christopher P. Bonafide, Lisa A. Schwartz. 2014. Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers. Inflammatory Bowel Diseases 20, 11: 2083–2091.
  57. Anne Marie Piper, Raymundo Cornejo, Lisa Hurwitz, and Caitlin Unumb. 2016. Technological Caregiving: Supporting Online Activity for Adults with Cognitive Impairments. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’16), 5311–5323.
  58. Ari H. Pollack, Uba Backonja, Andrew D. Miller, Sonali R. Mishra, Maher Khelifi, Logan Kendall, and Wanda Pratt. 2016. Closing the Gap: Supporting Patients’ Transition to Self-Management after Hospitalization. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’16), 5324–5336.
  59. Pew Research Center. 2016. http://www.pewinternet.org/2016/05/19/the-newdigital-economy/
  60. Angelo Ravelli and Alberto Martini. 2007. Juvenile idiopathic arthritis. The Lancet 369, 9563: 767–778
  61. Wolfgang H. Reitberger, Wolfgang Spreicer, Geraldine Fitzpatrick, Wolfgang H. Reitberger, Wolfgang Spreicer, and Geraldine Fitzpatrick. 2014. Nutriflect. Proceedings of the 32nd Annual ACM Conference on Human Factors in Computing Systems (CHI ’14), 3309–3318.
  62. John Rooksby, Mattias Rost, Alistair Morrison, and Matthew Chalmers. 2014. Personal tracking as lived informatics. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’14), 1163–1172.
  63. John Rooksby, Mattias Rost, Alistair Morrison, and Matthew Chalmers. 2015. Pass the Ball: Enforced Turn-Taking in Activity Tracking. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’15), 2417–2426.
  64. Herman Saksono, Ashwini Ranade, Geeta Kamarthi, et al. 2015. Spaceship Launch. Proceedings of the ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW ’15), 1776–1787.
  65. Aleksandra Sarcevic, Ivan Marsic, and Randal S. Burd. 2012. Teamwork Errors in Trauma Resuscitation. ACM Transactions on Computer-Human Interaction 19, 2: 1–30.
  66. Christopher L. Schaefbauer, Danish U. Khan, Amy Le, Garrett Sczechowski, and Katie A. Siek. 2015. Snack Buddy: Supporting Healthy Snacking in Low Socioeconomic Status Families. Proceedings of the ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW ’15), 1045–1057.
  67. Marén Schorch, Lin Wan, David William Randall, and Volker Wulf. 2016. Designing for Those who are Overlooked: Insider Perspectives on Care Practices and Cooperative Work of Elderly Informal Caregivers. Proceedings of the ACM Conference on ComputerSupported Cooperative Work & Social Computing (CSCW ’16). 787–799.
  68. Timothy Sohn, Lorikeet Lee, Stephanie Zhang, David Dearman, and Khai Truong. 2012. An examination of how households share and coordinate the completion of errands. Proceedings of the ACM Conference on Computer Supported Cooperative Work (CSCW ’12), 729–742. http://dl.acm.org/citation.cfm?id=2145204.2145315
  69. Natalie Stollon, Christine W. Paine, Matthew S. Lucas, Lauren D. Brumley, Erika S. Poole, Tamara Peyton, Anne W. Grant, Sophia Jan, Symme Trachtenberg, Miriam Zander, Petar Mamula, Christopher P. Bonafide, Lisa A. Schwartz. 2015. Transitioning adolescents and young adults with sickle cell disease from pediatric to adult health care: Provider perspectives. Journal of Pediatric Hematology/Oncology 37, 8: 577–583.
  70. Matthieu Tixier and Myriam Lewkowicz. 2016. Counting on the Group. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’16), 3545–3558.
  71. Tammy Toscos, Kay Connelly, and Yvonne Rogers. 2012. Best intentions: health monitoring technology and children. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’12), 1431–1440.
  72. Asimina Vasalou, Anne-Marie Oostveen, and Adam N. Joinson. 2012. A case study of non-adoption: the values of location tracking in the family. Proceedings of the ACM Conference on Computer Supported Cooperative Work (CSCW ’12), 779–788.
  73. Naomi Yamashita, Hideaki Kuzuoka, Keiji Hirata, and Takashi Kudo. 2013. Understanding the conflicting demands of family caregivers caring for depressed family members. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’13), 2637–2646.
  74. Svetlana Yarosh and Gregory D. Abowd. 2011. Mediated parent-child contact in work-separated families. Proceedings of the 2011 Annual Conference on Human Factors in Computing Systems (CHI ’11), 1185–1194.
  75. Jason C. Yip, Tamara Clegg, Elizabeth Bonsignore, Helene Gelderblom, Emily Rhodes, and Allison Druin. 2013. Brownies or bags-of-stuff? Proceedings of the 12th International Conference on Interaction Design and Children (IDC ’13), 201–210.
  76. Jason C. Yip, Lindsey Arnold, Alysse Gallo, Kung Jin Lee, Caroline Pitt, Kiley Sobel, and Sijin Chen. 2016. How to survive creating an intergenerational co-design group. Interactions 23, 4, 65–67.
  77. Weichao Yuwen, Mayda Lynn Chen, Kevin C. Cain, Sarah Ringold, Carol A. Wallace, and Teresa M. Ward. 2016. Daily Sleep Patterns, Sleep Quality, and Sleep Hygiene Among Parent-Child Dyads of Young Children Newly Diagnosed with Juvenile Idiopathic Arthritis and Typically Developing Children. Journal of Pediatric Psychology 41, 6:651–660.
  78. Greg Walsh, Elizabeth Foss, Jason Yip, and Allison Druin. 2013. FACIT PD. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’13), 2893–2912.
  79. Joanne V. Wood. 1989. Theory and research concerning social comparisons of personal attributes. Psychological Bulletin 106, 2: 231–248
  80. Mike Wu, Jeremy Birnholtz, Brian Richards, Ronald Baecker, and Mike Massimi. 2008. Collaborating to remember: a distributed cognition account of families coping with memory impairments. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’08), 825–834.