ABSTRACT
Although research has demonstrated improved outcomes for outpatients who receive peer support-such as through online health communities, support groups, and mentoring systems-hospitalized patients have few mechanisms to receive such valuable support. To explore the opportunities for a hospital-based peer support system, we administered a survey to 146 pediatric patients and caregivers, and conducted semi-structured interviews with twelve patients and three caregivers in a children's hospital. Our analysis revealed that hospitalized individuals need peer support for five key purposes: (1) to ask about medical details-such as procedures, treatments, and medications; (2) to learn about healthcare providers; (3) to report and prevent medical errors; (4) to exchange emotional support; and (5) to manage their time in the hospital. In this paper, we examine these themes and describe potential barriers to using a hospital-based peer support system. We then discuss the unique opportunities and challenges that the hospital environment presents when designing for peer support in this setting.
Supplemental Material
- Marina Bers, Clement Chau, Keiko Satoh, and Laura Beals. 2007. Virtual Communities of Care: Online Peer Networks with Post-Organ Transplant Youth. International Society of the Learning Sciences. Google ScholarCross Ref
- Marina U. Bers, Joseph Gonzalez-Heydrich, and David Ray DeMaso. 2001. Identity construction environments: supporting a virtual therapeutic community of pediatric patients undergoing dialysis. In Proceedings of the SIGCHI conference on Human factors in computing systems - CHI '01, 380--387. http://doi.org/10.1145/365024.365302 Google ScholarDigital Library
- Sharon H. Campbell, Marie Rose Phaneuf, and Karen Deane. 2004. Cancer peer support programs "do they work" Patient Education and Counseling 55, 1: 3--15. http://doi.org/10.1016/j.pec.2003.10.001 Google ScholarCross Ref
- Yu Chen, Mirana E. Randriambelonoro, Antoine Geissbuhler, and Pearl Pu. 2016. Social Incentives in Pervasive Fitness Apps for Obese and Diabetic patients. In Proceedings of the 19th ACM Conference on Computer Supported Cooperative Work and Social Computing Companion - CSCW '16 Companion, 245--248. http://doi.org/10.1145/2818052.2869093 Google ScholarDigital Library
- Jui-Chih Chin and Mengping Tsuei. 2009. Multiuser Narrative Sharing System for Children with Chronic Illness. In 2009 Ninth IEEE International Conference on Advanced Learning Technologies, 479--481. http://doi.org/10.1109/ICALT.2009.154 Google ScholarDigital Library
- Andrea Civan, David W. McDonald, Kenton T. Unruh, and Wanda Pratt. 2009. Locating patient expertise in everyday life. Proceedings of the ACM 2009 International Conference on Supporting Group Work - GROUP '09: 291--300. http://doi.org/10.1145/1531674.1531718 Google ScholarDigital Library
- Andrea Civan and Wanda Pratt. 2007. Threading together patient expertise. Proceedings of the American Medical Informatics Association Annual Symposium: 140--144. Retrieved from https://www.semanticscholar.org/paper/Threading- Together-Patient-Expertise-Hartzler-Pratt/64eed14b34218d8626d5411c0af9e8bd4630179c/pdfGoogle Scholar
- R J Cline and K M Haynes. 2001. Consumer health information seeking on the Internet: the state of the art. Health Education Research 16, 6: 671--92. http://doi.org/10.1093/HER/16.6.671 Google ScholarCross Ref
- J. R. Dale, S. M. Williams, and V. Bowyer. 2012. What is the effect of peer support on diabetes outcomes in adults? A systematic review. Diabetic Medicine 29, 11: 1361--1377. http://doi.org/10.1111/j.1464--5491.2012.03749.xGoogle ScholarCross Ref
- Honglu Du, Michael G. Youngblood, and Peter Pirolli. 2014. Efficacy of a Smartphone System to Support Groups in Behavior Change Programs. In Proceedings of the Wireless Health 2014 on National Institutes of Health - WH '14, 1--8. http://doi.org/10.1145/2668883.2668887 Google ScholarDigital Library
- Jordan Eschler, Zakariya Dehlawi, and Wanda Pratt. 2015. Self-Characterized Illness Phase and Information Needs of Participants in an Online Cancer Forum. Ninth International AAAI Conference on Web and Social Media: 101--109.Google Scholar
- Susannah Fox and Sydney Jones. 2009. The social life of health information. Washington, DC: Pew Internet & American Life Project: 2009--12.Google Scholar
- Victoria Louise Franklin, Alexandra Greene, Annalu Waller, Stephen Alan Greene, and Claudia Pagliari. 2008. Patients' Engagement with "Sweet Talk" - A Text Messaging Support System for Young People with Diabetes. Journal of Medical Internet Research 10, 2: e20. http://doi.org/10.2196/jmir.962Google ScholarCross Ref
- Jeana H Frost and Michael P Massagli. 2008. Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another's Data. Journal of Medical Internet Research 10, 3. http://doi.org/10.2196/jmir.1053 Google ScholarCross Ref
- Jeremy A. Greene, Niteesh K. Choudhry, Elaine Kilabuk, and William H. Shrank. 2011. Online Social Networking by Patients with Diabetes: A Qualitative Evaluation of Communication with Facebook. Journal of General Internal Medicine 26, 3: 287--292. http://doi.org/10.1007/s11606-010--1526--3Google ScholarCross Ref
- Shefali Haldar, Alex Filipkowski, Sonali R Mishra, et al. 2016. "Scared to go to the Hospital": Inpatient Experiences with Undesirable Events. Proceedings of the American Medical Informatics Association Annual Symposium 2016: 609--617.Google Scholar
- Andrea L. Hartzler, Megan N. Taylor, Albert Park, et al. 2016. Leveraging cues from person-generated health data for peer matching in online communities. Journal of the American Medical Informatics Association 23, 3: 496--507. http://doi.org/10.1093/jamia/ocv175 Google ScholarCross Ref
- Andrea L Hartzler, David W Mcdonald, Albert Park, Jina Huh, Charles Weaver, and Wanda Pratt. 2014. Evaluating Health Interest Profiles Extracted from Patient-Generated Data. Proceedings of the American Medical Informatics Association Annual Symposium 2014: 626--635.Google Scholar
- Andrea Hartzler and Wanda Pratt. 2011. Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians. Journal of Medical Internet Research 13, 3: e62. http://doi.org/10.2196/jmir.1728Google ScholarCross Ref
- Michele Heisler, Sandeep Vijan, Fatima Makki, and John D. Piette. 2010. Diabetes Control With Reciprocal Peer Support Versus Nurse Care Management: A Randomized Trial. Annals of Internal Medicine 153, 8: 507--515. http://doi.org/10.7326/0003--4819--153--8- 201010190-00007Google ScholarCross Ref
- Mette Terp Høybye, Christoffer Johansen, and Tine Tjørnhøj-Thomsen. 2005. Online interaction. Effects of storytelling in an internet breast cancer support group. Psycho-Oncology 14, 3: 211--220. http://doi.org/10.1002/pon.837 Google ScholarCross Ref
- Jina Huh and Mark S. Ackerman. 2012. Collaborative help in chronic disease management. Proceedings of the ACM 2012 conference on Computer Supported Cooperative Work - CSCW '12: 853. http://doi.org/10.1145/2145204.2145331 Google ScholarDigital Library
- Jina Huh, Leslie S Liu, Tina Neogi, Kori Inkpen, and Wanda Pratt. 2014. Health Vlogs as Social Support for Chronic Illness Management. ACM Transactions on Computer-Human Interaction 21, 4: 23. http://doi.org/10.1145/2630067Google ScholarDigital Library
- Maia Jacobs, James Clawson, and Elizabeth D. Mynatt. 2014. Cancer Navigation: Opportunities and Challenges for Facilitating the Breast Cancer Journey. Proceedings of the 17th ACM Conference on Computer Supported Cooperative Work & Social Computing - CSCW '14: 1467--1478. http://doi.org/10.1145/2531602.2531645Google ScholarDigital Library
- Elizabeth Kaziunas, Ayse G Buyuktur, Jasmine Jones, et al. 2015. Transition and Reflection in the Use of Health Information : The Case of Pediatric Bone Marrow Transplant Caregivers. Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing - CSCW '15: 1763--1774.Google ScholarDigital Library
- Logan Kendall, Sonali R Mishra, Ari Pollack, Barry Aaronson, and Wanda Pratt. 2015. Making background work visible: opportunities to address patient information needs in the hospital. Proceedings of the American Medical Informatics Association Annual Symposium 2015: 1957--66. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/26958295Google Scholar
- Sharon Lawn, Ann Smith, and Kelly Hunter. 2008. Mental health peer support for hospital avoidance and early discharge: An Australian example of consumer driven and operated service. Journal of Mental Health 17, 5: 498--508. http://doi.org/10.1080/09638230701530242 Google ScholarCross Ref
- Victor Li, David W. McDonald, Elizabeth V. Eikey, et al. 2014. Losing It Online: CharacterizingParticipation in an Online Weight Loss Community. In Proceedings of the 18th International Conference on Supporting Group Work - GROUP '14, 35--45. http://doi.org/10.1145/2660398.2660416Google ScholarDigital Library
- Leslie S Liu, Jina Huh, Tina Neogi, Kori Inkpen, and Wanda Pratt. 2013. Health Vlogger-Viewer Interaction in Chronic Illness Management. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems - CHI '13: 49--58. http://doi.org/10.1145/2470654.2470663Google ScholarDigital Library
- Leslie S Liu, Kori M. Inkpen, and Wanda Pratt. 2015. "I'm Not Like My Friends": Understanding How Children with a Chronic Illness Use Technology to Maintain Normalcy. Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing - CSCW '15: 1527--1539. http://doi.org/10.1145/2675133.2675201Google ScholarDigital Library
- Kate Lorig, Philip L. Ritter, Diana D. Laurent, et al. 2010. Online Diabetes Self-Management Program: a randomized study. Diabetes Care 33, 6: 1275--1281. Google ScholarCross Ref
- Julie Maitland and Matthew Chalmers. 2011. Designing for peer involvement in weight management. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems - CHI '11: 315--324. http://doi.org/10.1145/1978942.1978988 Google ScholarDigital Library
- Martin A Makary and Michael Daniel. 2016. Medical error the third leading cause of death in the US. BMJ 353: i2139. http://doi.org/10.1136/bmj.i2139 Google ScholarCross Ref
- Danielle M. McCarthy, Emily P. Ellison, Arjun K. Venkatesh, et al. 2013. Emergency department team communication with the patient: The patient's perspective. Journal of Emergency Medicine 45, 2: 262--270. http://doi.org/10.1016/j.jemermed.2012.07.052 Google ScholarCross Ref
- 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 19th ACM Conference on Computer Supported Cooperative Work and Social Computing Companion - CSCW '16. http://doi.org/10.1145/2818048.2819983Google ScholarDigital Library
- Andrew D Miller, Ari H Pollack, Wanda Pratt, and Seattle Children. 2016. Bursting the Information Bubble : Identifying Opportunities for Pediatric Patient-Centered Technology. Proceedings of the American Medical Informatics Association Annual Symposium: 894--903.Google Scholar
- Sonali R Mishra, Shefali Haldar, Ari H Pollack, et al. 2016. "Not Just a Receiver": Understanding Patient Behavior in the Hospital Environment. Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems - CHI '16: 3103--3114. http://doi.org/10.1145/2858036.2858167Google ScholarDigital Library
- S Anne Moorhead, Diane E Hazlett, Laura Harrison, Jennifer K Carroll, Anthea Irwin, and Ciska Hoving. 2013. A New Dimension of Health Care: Systematic Review of the Uses, Benefits, and Limitations of Social Media for Health Communication. Journal of Medical Internet Research 15, 4. http://doi.org/10.2196/jmir.1933Google ScholarCross Ref
- Dan Morris and Amy Karlson. 2011. Dynamic Accessibility Requirements for Hospital Patients. Human Factors: 1--5.Google Scholar
- Mark W. Newman, Debra Lauterbach, Sean A. Munson, Paul Resnick, and Margaret E. Morris. 2011. It's not that i don't have problems, i'm just not putting them on facebook. Proceedings of the ACM conference on Computer supported cooperative work - CSCW '11: 341. http://doi.org/10.1145/1958824.1958876 Google ScholarDigital Library
- Ari H Pollack, Uba Backonja, Andrew D Miller, et al. 2016. Closing the Gap: Supporting Patients' Transition to Self-Management after Hospitalization. Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems - CHI '16: 5324--5336. http://doi.org/10.1145/2858036.2858240Google ScholarDigital Library
- Jenny Preece. 1998. Empathic communities: reaching out across the Web. Interactions 5, 2: 32--43. http://doi.org/10.1145/274430.274435 Google ScholarDigital Library
- Mary Jane Rotheram-Borus, Mark Tomlinson, Margaret Gwegwe, W Scott Comulada, Neal Kaufman, and Marion Keim. 2012. Diabetes buddies: peer support through a mobile phone buddy system. The Diabetes educator 38, 3: 357--65. http://doi.org/10.1177/014572171244461744. J. Sarasohn-Kahn and California Healthcare Foundation. 2008. The Wisdom of Patients: Health Care Meets Online Social Media. California HealthCare Foundation, April. Retrieved from http://www.chcf.org/publications/2008/04/thewisdom-of-patients-health-care-meets-onlinesocial-mediaGoogle Scholar
- William H. Sledge, Martha Lawless, David Sells, Melissa Wieland, Maria J. O'Connell, and Larry Davidson. 2011. Effectiveness of Peer Support in Reducing Readmissions of Persons With Multiple Psychiatric Hospitalizations. Psychiatric Services 62, 5: 541--544. http://doi.org/10.1176/ps.62.5.pss6205_0541 Google ScholarCross Ref
- Juliet M. Strauss, Anselm L.; Corbin. 1998. Basicsof Qualitative Research: Techniques and Procedures for Developing Grounded Theory. http://doi.org/10.1017/CBO9781107415324.004Google Scholar
- M W Verheijden, J C Bakx, C van Weel, M A Koelen, and W A van Staveren. 2005. Role of social support in lifestyle-focused weight management interventions. European Journal of Clinical Nutrition 59: S179--S186. http://doi.org/10.1038/sj.ejcn.1602194 Google ScholarCross Ref
- Marianne Webb, Jane Burns, and Philippa Collin. 2008. Providing online support for young people with mental health difficulties: challenges and opportunities explored. Early Intervention in Psychiatry 2, 2: 108--113. http://doi.org/10.1111/j.1751--7893.2008.00066.xGoogle ScholarCross Ref
- Mary Webster, Emma Foster, Rob Comber, Simon Bowen, Tim Cheetham, and Madeline Balaam. 2015. Understanding the lived experience of adolescents with type 1 diabetes. Proceedings of the 14th International Conference on Interaction Design and Children - IDC '15: 140--149. http://doi.org/10.1145/2771839.2771854 Google ScholarDigital Library
- M White and S M Dorman. 2001. Receiving social support online: implications for health education. Health Education Research 16, 6: 693--707. http://doi.org/10.1093/HER/16.6.693 Google ScholarCross Ref
- Andrew J. Winzelberg, Catherine Classen, Georg W. Alpers, et al. 2003. Evaluation of an internet support group for women with primary breast cancer. Cancer 97, 5: 1164--1173. http://doi.org/10.1002/cncr.11174 Google ScholarCross Ref
- 2014. Fast Facts on US Hospitals. Retrieved from http://www.aha.org/research/rc/stat-studies/fastfacts.htmlGoogle Scholar
Index Terms
- Opportunities and Design Considerations for Peer Support in a Hospital Setting
Recommendations
Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives
CHI '18: Proceedings of the 2018 CHI Conference on Human Factors in Computing SystemsThe hospital setting creates a high-stakes environment where patients' lives depend on accurate tracking of health data. Despite recent work emphasizing the importance of patients' engagement in their own health care, less is known about how patients ...
Design Opportunities for Mental Health Peer Support Technologies
CSCW '17: Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social ComputingBarriers to accessing mental health care leave the majority of people with mental illnesses without professional care. Peer support has been shown to address gaps in care, and could scale to wider audiences through technology. But technology design for ...
Partners in Care: Design Considerations for Caregivers and Patients During a Hospital Stay
CSCW '16: Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social ComputingInformal caregivers, such as close friends and family, play an important role in a hospital patient's care. Although CSCW researchers have shown the potential for social computing technologies to help patients and their caregivers manage chronic ...
Comments