research-article

Estrellita: A Mobile Capture and Access Tool for the Support of Preterm Infants and Their Caregivers

Authors:

Gillian R. Hayes,

Karen G. Cheng,

Marni S. Nagel,

Dianne E. BakerAuthors Info & Claims

ACM Transactions on Computer-Human Interaction (TOCHI), Volume 21, Issue 3

Article No.: 19, Pages 1 - 28

https://doi.org/10.1145/2617574

Published: 16 June 2014 Publication History

Abstract

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.

References

[1]

G. D. Abowd and E. D. Mynatt. 2000. Charting past, present, and future research in ubiquitous computing. ACM Transactions on Computer Human Interaction, 7, 1, 29--59.

Digital Library

[2]

R. R. Abidin. 1990. Parenting Stress Index (PSI). Pediatric Psychology Press.

[3]

C. Barker and R. Lemle. 1987. Informal helping in partner and stranger dyads. Journal of Marriage and Family. 49, 3, 541--547.

[4]

J. Bauer, S. Consolvo, B. Greenstein, J. Schooler, E. Wu, N. F. Watson, and J. Kientz. 2012. ShutEye: encouraging awareness of healthy sleep recommendations with a mobile, peripheral display. In Proceedings of the 2012 ACM Annual Conference on Human Factors in Computing Systems, 1401--1410.

Digital Library

[5]

S. Blackburn. 1995. Problems of preterm infants after discharge. Journal of Obstetric, Gynecologic, and Neonatal Nursing 24, 1, 4349.

[6]

J. R. Brubaker, C. Lustig, and G. R. Hayes. 2010. PatientsLikeMe: empowerment and representation in a patient-centered social network. In CSCW’10; Workshop on Research in Healthcare: Past, Present, and Future.

[7]

M. K. Campbell, E. Halinda, M. J. Carlyle, A. M. Fox, L. A. Turner, and G. W. Chance. 1993. Factors predictive of follow-up clinic attendance and developmental outcome in a regional cohort of very low birth weight infants. American Journal of Epidemiology 138, 9, 704--713.

[8]

M. C. Chiu, S. P. Chang, Y. C. Chang, H. H. Chu, C. C. H. Chen, F. H. Hsiao, and J. C. Ko. 2009. Playful bottle: a mobile social persuasion system to motivate healthy water intake. In Proceedings of the 11th international conference on Ubiquitous Computing. 185--194.

Digital Library

[9]

S. Cockcroft. 2011. How can family centred care be improved to meet the needs of parents with a premature baby in neonatal intensive care&quest; Journal of Neonatal Nursing 18, 3, 105--110.

[10]

S. Cohen, T. Kamarck, and R. Mermelstein. 1983. A global measure of perceived stress. Journal of Health and Social Behavior 24, 4, 385--396.

[11]

S. Consolvo, K. Everitt, I. Smith, and J. A. Landay. 2006. Design requirements for technologies that encourage physical activity. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI’06). 457--466.

Digital Library

[12]

J. L. Cox, J. M. Holden, and R. Sagovsky. 1987. Detection of postnatal depression. Development of the 10-item Edinburgh Postnatal Depression Scale. British Journal of Psychiatry 150, 6, 782--786.

[13]

K. Crnic, M. Greenberg, A. Ragozin, N. Robinson, and R. Basham. 1983. Effects of stress and social spport on mothers and premature and full-term infants. Child Development 54, 1, 209--217.

[14]

D. Deaves. 1993. An assessment of the value of health education in the prevention of childhood asthma. Journal of Advanced Nursing 18, 354--363.

[15]

A. Eward. 1959--1979. Toward an Integrated Medicine: Classics from Psychosomatic Medicine. American Psychosomatic Society, 379--396.

[16]

A. G. Fiks, R. W. Grundmeier, L. M. Biggs, A. R. Localio, and E. A. Alessandrini. 2007. Impact of clinical alerts within an electronic health record on routine childhood immunization in an urban pediatric population. Pediatrics 120, 4, 707--714.

[17]

A. Gallo, B. Breitmayer, K. Knafi, and L. Zoeller. 1991. Stigma in childhood chronic illness: A well sibling perspective. Pediatric Nursing 17, 1, 21--25.

[18]

J. E. Gray, C. Safran, R. B. Davis, G. Pompilio-Weitzner, J. E. Stewart, L. Zaccagnini, and D. Pursley. 2000. Baby CareLink: Using the Internet and telemedicine to improve care for high-risk infants. Pediatrics 106, 6, 1318--1324.

[19]

A. Greenough. 2008. Long-term pulmonary outcome in the preterm infant. Neonatology 93, 4, 324--327.

[20]

F. Greer. 2007. 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. Journal of Pediatric Gastroenterology and Nutrition 45, S147--S151.

[21]

J. Grudin. 1994. Groupware and social dynamics: eight challenges for developers. Communications of the ACM 37, 1, 92--105.

Digital Library

[22]

G. R. Hayes. 2011. The relationship of action research to human-computer interaction. ACM Transactions on Computer-Human Interaction 18, 3, Article 15 (August 2011), 20 pages.

Digital Library

[23]

G. R. Hayes, C. P. Lee, and P. Dourish. 2011. Organizational routines, innovation, and flexibility: The application of narrative networks to dynamic workflow. International Journal of Medical Informatics 80, 8, e161--e177.

[24]

G. R. Hayes, D. J. Patterson, M. Singh, D. Gravem, J. Rich, and D. Cooper. 2011. Supporting the transition from hospital to home for premature infants using integrated mobile computing and sensor support. Personal and Ubiquitous Computing 15, 8, 871--885.

Digital Library

[25]

D. Holditch Davis, T. Schwartz, B. Black, and M. Scher. 2007. Correlates of mother--premature infant interactions. Research in Nursing and Health 30, 3, 333--346.

[26]

H. Y. Jeong, S. Y. Park, and J. Zimmerman. 2008. Opportunities to support parents in managing their children's health. In Extended Abstracts on Human Factors in Computing Systems (CHI’08). 3225--3230.

Digital Library

[27]

K. B. Johnson, J. R. Serwint, L. M. Fagan, R. E. Thompson, and M. H. Wilson. 2005. Computer-based documentation: effect on parent and physician satisfaction during a pediatric health maintenance encounter. Archives of Pediatrics and Adolescent Medicine 159, 3, 250.

[28]

J. A. Kientz. 2012. Embedded capture and access: encouraging recording and reviewing of data in the caregiving domain. Personal and Ubiquitous Computing 16, 2, 209--221.

Digital Library

[29]

J. A. Kientz, R. I. Arriaga, and G. D. Abowd. 2009. Baby steps: evaluation of a system to support record-keeping for parents of young children. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI’09). 1713--1722.

Digital Library

[30]

J. A. Kientz, R. I. Arriaga, M. Chetty, G. R. Hayes, J. Richardson, S. N. Patel, and G. D. Abowd. 2007. Grow and know: understanding record-keeping needs for tracking the development of young children. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI’07). 1351--1360.

Digital Library

[31]

P. Klasnja and W. Pratt. 2012. Healthcare in the pocket: Mapping the space of mobile-phone health interventions. Journal of Biomedical Informatics 45, 1, 184--198.

Digital Library

[32]

Y. S. Lee, C. Garfield, N. Massey, S. Chaysinh, and S. Hassan. 2011. NICU-2-HOME: supporting the transition to home from the neonatal intensive care unit using a mobile application. In Extended Abstracts on Human Factors in Computing Systems (CHI’11). 2257--2262.

Digital Library

[33]

I. Li, A. Dey, and J. Forlizzi. 2010. A stage-based model of personal informatics systems. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI’10). 557--566.

Digital Library

[34]

I. Li, A. Dey, J. Forlizzi, K. Höök, and Y. Medynskiy. 2011. Personal informatics and HCI: design, theory, and social implications. In Extended Abstracts on Human Factors in Computing Systems (CHI’11). 2417--2420.

Digital Library

[35]

F. R. Liaw, S. J. Meisels, and J. Brooks-Gunn. 1995. The effects of experience of early intervention on low birth weight, premature children: The Infant Health and Development Program. Early Child Research Quarterly 10, 4, 405--431.

[36]

L. S. Liu, S. H. Hirano, M. Tentori, K. G. Cheng, S. George, S. Y. Park, and G. R. Hayes. 2011. Improving communication and social support for caregivers of high-risk infants through mobile technologies. In Proceedings of the ACM 2011 Conference on Computer Supported Cooperative Work (CSCW’11). 475--484.

Digital Library

[37]

Z. C. Luo, R. Wilkins, and M. S. Kramer. 2006. Effect of neighbourhood income and maternal education on birth outcomes: a population-based study. Canadian Medical Association Journal 174, 10, 1415--1420.

[38]

N. Marlow, D. Wolke, M. Bracewell, and M. Samara. 2005. Neurologic and developmental disability at six years of age after extremely preterm birth. Pediatrics 117, 3, 940--941.

[39]

C. S. Morgen, C. Bjørk, P. K. Andersen, L. H. Mortensen, and A. M. N. Andersen. 2008. Socioeconomic position and the risk of preterm birth—a study within the Danish National Birth Cohort. International Journal of Epidemiology 37, 5, 1109--1120.

[40]

M. E. Morris, Q. Kathawala, T. K. Leen, E. E. Gorenstein, F. Guilak, M. Labhard, and W. Deleeuw. 2010. Mobile therapy: case study evaluations of a cell phone application for emotional self-awareness. Journal of Medical Internet Research 12, 2.

[41]

C. Muller-Nix, M. Forcada-Guex, B. Pierrehumbert, L. Jaunin, A. Borghini, and F. Ansermet. 2004. Prematurity, maternal stress and mother--child interactions. Early Human Development 79, 2, 145--158.

[42]

S. A. Munson and S. Consolvo. 2012. Exploring goal-setting, rewards, self-monitoring, and sharing to motivate physical activity. In Proceedings of the 2012 6th International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth). 25--32.

[43]

J. Neu. 2007. Gastrointestinal development and meeting the nutritional needs of premature infants. American Journal of Clinical Nutrition 85, 2, 629S--634S.

[44]

A. Nosko, E. Wood, and S. Molema. 2010. All about me: Disclosure in online social networking profiles: The case of Facebook. Computers in Human Behavior 26, 406--418.

Digital Library

[45]

P. O’Campo, J. G. Burke, J. Culhane, I. T. Elo, J. Eyster, C. Holzman, L. C. Messer, J. S. Kaufman, and B. A. Laraia. 2008. Neighborhood deprivation and preterm birth among non-Hispanic Black and White women in eight geographic areas in the United States. American Journal of Epidemiology 167, 2, 155--163.

[46]

A. Rothman and P. Salovey. 1997. Shaping perceptions to motivate healthy behavior: The role of message framing. Psychological Bulletin 121, 1, 3--19.

[47]

R. N. Shiffman, S. A. Spooner, K. Kwiatkowski, and P. F. Brennan. 2001. Information technology for children's health and health care: report on the Information Technology in Children's Health Care Expert Meeting. Journal of the American Medical Informatics Association 8, 6, 546--551.

[48]

K. Siek, G. R. Hayes, M. Newman, and J. Tang. 2014. Field Deployments: Knowing from Using in Context. Ways of Knowing in HCI. Judy Olson and Wendy Kellogg, Eds. Springer Verlag, 119--142.

[49]

J. M. Slagle, J. S. Gordon, C. E. Harris, C. L. Davison, D. K. Culpepper, P. Scott, and K. B. Johnson. 2010. MyMediHealth--Designing a next generation system for child-centered medication management. Journal of Biomedical Informatics 43, 5, S27--S31.

Digital Library

[50]

M. Swan. 2009. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. International Journal of Environmental Research and Public Health 6, 2, 492--525

[51]

K. P. Tang, S. H. Hirano, K. G. Cheng, and G. R. Hayes. 2012. Balancing caregiver and clinician needs in a mobile health informatics tool for preterm infants. In Proceedings of 6th Annual Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth). 1--8.

[52]

D. Whyte. 1992. A family approach to the care of a child with a chronic illness. Journal of Advanced Nursing 17, 317--327.

[53]

L. Wijnroks. 1999. Maternal recollected anxiety and mother--infant interaction in preterm infants. Infant Mental Health Journal 20, 4, 393--409.

[54]

G. Wolf, A. Carmichael, and K. Kelly. 2010. The Quantified Self. Available at http://www.ted.com/talks/gary_ wolf_the_quantified_self.html.

Cited By

Thompson LCharitos SBeaumont KBrigden ABird J(2024)Exploring Young Children's Views on Sharing Personal Health Data Between Ages 7-14Proceedings of the 23rd Annual ACM Interaction Design and Children Conference10.1145/3628516.3659397(800-805)Online publication date: 17-Jun-2024
https://dl.acm.org/doi/10.1145/3628516.3659397
Silva LCibrian FBonang CBhattacharya AMin AMonteiro EBeltran JSchuck SLakes KHayes GEpstein D(2024)Co-Designing Situated Displays for Family Co-Regulation with ADHD ChildrenProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642745(1-19)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642745
Su ZKamath STirakitsoontorn PChen Y(2024)Creating Safe Places: Understanding the Lived Experiences of Families Managing Cystic Fibrosis in Young ChildrenProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642334(1-18)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642334
Show More Cited By

Index Terms

Estrellita: A Mobile Capture and Access Tool for the Support of Preterm Infants and Their Caregivers
1. Applied computing
  1. Life and medical sciences

Recommendations

Predicting postpartum changes in emotion and behavior via social media
CHI '13: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems

We consider social media as a promising tool for public health, focusing on the use of Twitter posts to build predictive models about the forthcoming influence of childbirth on the behavior and mood of new mothers. Using Twitter posts, we quantify ...
Major life changes and behavioral markers in social media: case of childbirth
CSCW '13: Proceedings of the 2013 conference on Computer supported cooperative work

We explore the harnessing of social media as a window on changes around major life events in individuals and larger populations. We specifically examine patterns of activity, emotional, and linguistic correlates for childbirth and postnatal course. ...
Characterizing and predicting postpartum depression from shared facebook data
CSCW '14: Proceedings of the 17th ACM conference on Computer supported cooperative work & social computing

The birth of a child is a major milestone in the life of parents. We leverage Facebook data shared voluntarily by 165 new mothers as streams of evidence for characterizing their postnatal experiences. We consider multiple measures including activity, ...

Comments

Please enable JavaScript to view thecomments powered by Disqus.

Information & Contributors

Information

Published In

cover image ACM Transactions on Computer-Human Interaction

ACM Transactions on Computer-Human Interaction Volume 21, Issue 3

June 2014

174 pages

ISSN:1073-0516

EISSN:1557-7325

DOI:10.1145/2633906

Issue’s Table of Contents

Copyright © 2014 ACM.

Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than the author(s) must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected].

Publisher

Association for Computing Machinery

New York, NY, United States

Publication History

Published: 16 June 2014

Accepted: 01 April 2014

Revised: 01 February 2014

Received: 01 September 2013

Published in TOCHI Volume 21, Issue 3

Permissions

Request permissions for this article.

Request Permissions

Check for updates

Author Tags

Qualifiers

Research-article
Research
Refereed

Funding Sources

Google
National Science Foundation
Project Health Design

Contributors

Other Metrics

View Article Metrics

Bibliometrics & Citations

Bibliometrics

Article Metrics

41
Total Citations
View Citations
663
Total Downloads

Downloads (Last 12 months)45
Downloads (Last 6 weeks)7

Reflects downloads up to 21 Nov 2024

Other Metrics

View Author Metrics

Citations

Cited By

Thompson LCharitos SBeaumont KBrigden ABird J(2024)Exploring Young Children's Views on Sharing Personal Health Data Between Ages 7-14Proceedings of the 23rd Annual ACM Interaction Design and Children Conference10.1145/3628516.3659397(800-805)Online publication date: 17-Jun-2024
https://dl.acm.org/doi/10.1145/3628516.3659397
Silva LCibrian FBonang CBhattacharya AMin AMonteiro EBeltran JSchuck SLakes KHayes GEpstein D(2024)Co-Designing Situated Displays for Family Co-Regulation with ADHD ChildrenProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642745(1-19)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642745
Su ZKamath STirakitsoontorn PChen Y(2024)Creating Safe Places: Understanding the Lived Experiences of Families Managing Cystic Fibrosis in Young ChildrenProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642334(1-18)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642334
Kabir KWiese J(2023)A Meta-Synthesis of the Barriers and Facilitators for Personal Informatics SystemsProceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies10.1145/36108937:3(1-35)Online publication date: 27-Sep-2023
https://dl.acm.org/doi/10.1145/3610893
Sun YMa XLindtner SHe L(2023)Care Workers' Wellbeing in Data-Driven Healthcare Workplace: Identity, Agency, and Social JusticeProceedings of the ACM on Human-Computer Interaction10.1145/36101787:CSCW2(1-29)Online publication date: 4-Oct-2023
https://dl.acm.org/doi/10.1145/3610178
Sun YMa XLindtner SHe L(2023)Data Work of Frontline Care Workers: Practices, Problems, and Opportunities in the Context of Data-Driven Long-Term CareProceedings of the ACM on Human-Computer Interaction10.1145/35794757:CSCW1(1-28)Online publication date: 16-Apr-2023
https://dl.acm.org/doi/10.1145/3579475
Siddiqui FVarghese DSingh PBayyavarapu SLindsay SChandrasekara DKulkarni PWu LAlshehri TOlivier P(2023)Exploring the digital support needs of caregivers of people with serious mental illnessProceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3580674(1-16)Online publication date: 19-Apr-2023
https://dl.acm.org/doi/10.1145/3544548.3580674
Shafqat NVerma RBali SGeorge T(2022)Patient-Generated Health DataJournal of Medical Evidence10.4103/JME.JME_9_223:3(242-248)Online publication date: Sep-2022
https://doi.org/10.4103/JME.JME_9_22
DeWitt AKientz JCoker TLiljenquist K(2022)mHealth Technology Design and Evaluation for Early Childhood Health Promotion: Systematic Literature ReviewJMIR Pediatrics and Parenting10.2196/377185:4(e37718)Online publication date: 6-Oct-2022
https://doi.org/10.2196/37718
Richards OScott CSpiller AMarcu G(2022)"Wearing a High Heel and a House Shoe at the Same Time": Parents' Information Needs While Navigating Change in their Child's Behavioral CareProceedings of the ACM on Human-Computer Interaction10.1145/35557726:CSCW2(1-32)Online publication date: 11-Nov-2022
https://dl.acm.org/doi/10.1145/3555772
Show More Cited By

View Options

Login options

Check if you have access through your login credentials or your institution to get full access on this article.

Full Access

Get this Article

View options

PDF

View or Download as a PDF file.

eReader

View online with eReader.

Media

Figures

Other

Tables

View Issue’s Table of Contents