ABSTRACT
Upon leaving the hospital, parents of high-risk infants experience a variety of challenges in providing care at home. In this work, we present results from a qualitative study to understand the role of social interaction and information-sharing surrounding high-risk infants among both home caregivers and health professionals. These results demonstrate challenges in communication and social support for caregivers of these infants. Based on these results, we present design guidelines for collaborative communication technologies for this population and a prototype system design that demonstrates how these design guidelines might be met in a mobile application. Finally, we discuss how collaborative technologies can serve to improve communication with professionals as well as provide much-needed social support.
- Abowd, G., Hayes, G.R., Kientz, J., Mamykina, K., Mynatt, E. Challenges and Opportunities for Collaboration Technologies for Chronic Care Management. In Proc. HCIC'06, 1--13.Google Scholar
- Abraham, J., Reddy, M. Moving Patients Around: a Field Study of Coordination between Clinical and Non-Clinical Staff in Hospitals. In Proc. CSCW'08, 225--228. Google ScholarDigital Library
- Anderson, P., Doyle, L. Neurobehavioral outcomes of school-age children born extremely low birth weight or very preterm in the 1990s. JAMA, 3264--3272. 2003.Google Scholar
- Barrera, M., Ainlay, S. The Structure of Social Support: A Conceptual and Empirical Analysis. Journal of Community Psychology, 133--143. 1983.Google Scholar
- Biemans, M., van Dijk, B., Dadlani, P., van Halteren, A. Let's Stay in Touch: Sharing Photos for Restoring Social Connectedness between Rehabilitants, Friends, and Family. In Proc. ACM SICACCESS'09, 179--186. Google ScholarDigital Library
- Brubaker, J., Lustig, C., Hayes, G. PatientsLikeMe: Empowerment and Representation in a Patient-Centered Social Network. CSCW'10; Workshop on Research in Healthcare: Past, Present, and Future.Google Scholar
- Consolvo, S., Everitt, K., Smith, I., and Landay, J. A. Design requirements for technologies that encourage physical activity. In Proc. CHI'06, 456--466. Google ScholarDigital Library
- Crnic, K., Greenberg, M., Ragozin, A., Robinson, N., Basham, R. Effects of Stress and Social Support on Mothers and Premature and Full-Term Infants. Child Development, 209--217. 1983.Google Scholar
- Drotar, D. Physician Behavior in the Care of Pediatric Chronic Illness: Association with Health Outcomes and Treatment Adherence. Journal of Developmental and Behavioral Pediatrics, 246--254. 2009.Google Scholar
- Eward, A. Toward an Integrated Medicine: Classics from Psychosomatic Medicine. American Psychosomatic Society, 379--396. 1959--1979.Google Scholar
- 1Facebook Demographics and Statistics Report 2010. http://www.istrategylabs.com/2010/01/facebook-demographics-and-statistics-report-2010--145-growth-in-1-year.Google Scholar
- Farnham, S., Cheng, L., Stone, L., Zaner-Godsey, M., Hibbeln, C., Syrjala, K., Clark, A. M., and Abrams, J. HutchWorld: clinical study of computer-mediated social support for cancer patients and their caregivers. In Proc. CHI'02, 375--382. Google ScholarDigital Library
- Gallo, A., Breitmayer, B., Knafi, K., Zoeller, L. Stigma in Childhood Chronic Illness: A Well Sibling Perspective. Pediatric Nursing, 21--25. 1991.Google Scholar
- Gasca, E., Favela, J., Tentori, M. Persuasive Virtual Communities to Promote a Healthy Lifestyle among Patients with Chronic Diseases. In Proc. of the 14th International Workshop: CRIWG '08, 74--82.Google Scholar
- Golish, T., Powell, K. "Ambiguous loss": Managing the Dialectics of Grief Associated with Premature Birth. Journal of Social and Personal Relationships, 309--334. 2003.Google Scholar
- Grudin, J. Groupware and Social Dynamics: Eight Challenges for Developers. Commun. ACM, 92--105. 1994. Google ScholarDigital Library
- Hack, M., Taylor, H., Drotar, D., Schulchter, M., Cartar, L., Andreias, K., Wilson-Costello, D., Klein, N. Chronic Conditions, Functional Limitations, and Special Health Care Needs of School-aged Children Born with Extremely Low-Birth-Weight in the 1990s. JAMA, 318--325. 2005.Google Scholar
- Hamilton, B., Martin, J., Sutton, P. Births: Preliminary Data for 2002. National Vital Statistics Repository, 1--20.Google Scholar
- Josefsson, U. Coping with Illness Online: The Case of Patients' Online Communities. The Information Society, 133--141. 2005.Google Scholar
- Kientz, J., Arriaga, R., Abowd, G. Baby Steps: Evaluation of a System to Support Record-Keeping for Parents of Young Children. In Proc. CHI'09, 1713--1722. Google ScholarDigital Library
- 2Marlow, N., Wolke, D., Bracewell, M., Samara, M. Neurologic and developmental disability at six years of age after extremely preterm birth. New England Journal of Medicine, 9--19. 2005.Google Scholar
- 2Nardi, B., Schiano, D., Gumbrecht, M., Swartz, L. Why we blog. Commun. ACM, 41--46. 2004. Google ScholarDigital Library
- Ngo-Metzger, Q., Hayes, G.R., Chen, Y., Cygan, R., Garfield, C.E. Improving Communication Between Patients and Providers Using Health Information Technology and Other Quality Improvement Strategies: Focus on Low-Income Children. Medical Care Research and Review. 2010. To Appear.Google Scholar
- Parker, R., Ratzan, S., Lurie, N. Health Literacy: a Policy Challenge for Advancing High-Quality Health Care. Health Affairs, 147--153. 2003.Google Scholar
- de Sá, M., Carriço, L., and Antunes, P. Defining personalized therapies for handheld devices. In Proc. of the ACM Symposium on Applied Computing '07, 163--164. Google ScholarDigital Library
- Skeels, M., Unruh, K., Powell, C., Pratt, W. Catalyzing Social Support for Breast Cancer Patients. In Proc. CHI'10, 173--182. Google ScholarDigital Library
- Sohn, M., Lee, J. UP health: ubiquitously persuasive health promotion with an instant messaging system. In Proc. CHI'07, 2663--2668. Google ScholarDigital Library
- Stange, K., Zyzanski, S., Jaen, C., Callahan, E., Kelly, R., Gillanders, W., Shank, J., Chao, J., Medalie, J., Miller, W., Crabtree, B., Flocke, S., Gilchrist, V., Langa, D., Goodwin, M. Illuminating the 'black box'. A description of 4454 patient vists to 138 family physicians. Journal of Family Practice, 377--289. 1998.Google Scholar
- Strunk, R., Fisher, E. Risk Factors for Morbidity and Mortality in Asthma. Sever Asthma: Pathogenesis & Clinical Management, 265--289. 1996.Google Scholar
- Williams, M., Parker, R., Baker, D., Parikh, N., Pitkin, K., Coates, W., Nurss, J. Inadequate Functional Health Literacy Among Patients at Two Public Hospitals. JAMA, 1677--1682. 1995.Google Scholar
- 3Westin, A, Maurici, D. E-commerce and privacy: what net users want. Technical Report, Louis Harris & Associates. 1998.Google Scholar
- 3Zhao, D., Rosson, M. How and why people Twitter: the role that micro-blogging plays in informal communication at work. In Proc. Group'09, 243--252. Google ScholarDigital Library
Index Terms
- Improving communication and social support for caregivers of high-risk infants through mobile technologies
Recommendations
Mobile media use by infants and toddlers
AbstractThis study examined mobile media (MM) use patterns by infants and toddlers (36 months old and younger, N = 326) from a family media ecology perspective. Parents' frequency of MM use, their motives for child's use, and child's age ...
Highlights- Parents' frequency of mobile media (MM) use predicted children's total MM use on our online survey.
"Its Changes so Often": Parental Non-/Use of Mobile Devices While Caring for Infants and Toddlers at Home
CSCW2Parents' use of mobile devices (tablets and mobile phones) while caring for children is considered to be beneficial, but also problematic. In this study, we aimed to understand parents' technology non-/use practices around infants and toddlers in the ...
Extracting information on pneumonia in infants using natural language processing of radiology reports
Special section: JAMA commentariesNatural language processing (NLP) is critical for improvement of the healthcare process because it can encode clinical data in patient documents. Many clinical applications such as decision support require coded data to function appropriately. However, ...
Comments