More Web Proxy on the site http://driver.im/

research-article

"I think we know more than our doctors": How Primary Caregivers Manage Care Teams with Limited Disease-related Expertise

Authors:

Galina Gheihman,

Krzysztof Z. Gajos,

Anoopum S. GuptaAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 3, Issue CSCW

Article No.: 159, Pages 1 - 22

https://doi.org/10.1145/3359261

Published: 07 November 2019 Publication History

Abstract

Healthcare providers play a critical role in the management of a chronic illness by providing education about the disease, recommending treatment options, and developing care plans. However, when managing a rare disease, patients and their primary caregivers often work with healthcare systems that lack the infrastructure to diagnosis, treat, or provide education on the disease. Little research has explored care coordination practices between patients, family members, and healthcare providers under these circumstances. With the goal of identifying opportunities for technological support, we conducted qualitative interviews with the primary caregivers of children with a rare neurodegenerative disorder, ataxia-telangiectasia. We report on the responsibilities that the primary caregivers take on in response to care teams' lack of experience with the illness, and the ways in which an online health community supports this care coordination work. We also describe barriers that limited participants' use of the online health community, including the emotional consequences of participation and information overload. Based on these findings, we discuss two promising research agendas for supporting rare disease management: facilitating primary caregivers' care coordination tasks and increasing access to online community knowledge.

References

[1]

Mark S. Ackerman, Anne Swenson, Stephen Cotterill, and Kurtis DeMaagd. 2003. I-DIAG: From Community Discussion to Knowledge Distillation . Communities and Technologies (2003), 307--325. https://doi.org/10.1007/978--94-017-0115-0_16

[2]

Ofra Amir, Barbara J. Grosz, Krzysztof Z. Gajos, Sonja M. Swenson, and Lee M. Sanders. 2015. From Care Plans to Care Coordination: Opportunities for Computer Support for Teamwork in Complex Healthcare . Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems - CHI '15 (2015), 1419--1428. https://doi.org/10.1145/2702123.2702320

[3]

Neeraj K Arora, Pauley Johnson, David H Gustafson, Fiona Mctavish, Robert P Hawkins, and Suzanne Pingree. 2002. Barriers to information access, perceived health competence, and psychosocial health outcomes: test of a mediation model in a breast cancer sample . Patient education and counseling, Vol. 47 (2002), 37--46.

[4]

Stephanie L. Ayers and Jennie Jacobs Kronenfeld. 2007. Chronic illness and health-seeking information on the Internet . Health, Vol. 11, 3 (2007), 327--347. https://doi.org/10.1177/1363459307077547

[5]

Julie Barlow, Chris Wright, Janice Sheasby, Andy Turner, and Jenny Hainsworth. 2002. Self-management approaches for people with chronic conditions: A review . Patient Education and Counseling, Vol. 48, 2 (2002), 177--187. https://doi.org/10.1016/S0738--3991(02)00032-0

[6]

Elizabeth Bernabeo and Eric S. Holmboe. 2013. Patients, providers, and systems need to acquire a specific set of competencies to achieve truly patient-centered care . Health Affairs, Vol. 32, 2 (2013), 250--258. https://doi.org/10.1377/hlthaff.2012.1120

[7]

Thomas Bodenheimer, Kate Lorig, Halsted Holman, and Kevin Grumbach. 2002. Patient Self-management of Chronic Disease in Primary Care . Journal of the American Medical Association, Vol. 288, 19 (2002), 2469--2475. https://doi.org/10.1001/jama.288.19.2469

[8]

Karolina Budych, Thomas M. Helms, and Carsten Schultz. 2012. How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient-physician interaction . Health Policy, Vol. 105, 2--3 (2012), 154--164. https://doi.org/10.1016/j.healthpol.2012.02.018 arxiv: arXiv:1011.1669v3

[9]

Ayse G Bü yü ktü r and Mark S Ackerman. 2017. Information Work in Bone Marrow Transplant: Reducing Misalignment of Perspectives. In Proceedings of the SIGCHI Conference on Computer Support Cooperative Work (CSCW '17). 1740--1752.

[10]

Donald O Case, James E Andrews, J David Johnson, and Suzanne L Allard. 2005. Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. Journal of the Medical Library Association, Vol. 93, 3 (2005), 353--62.

[11]

Branko G Celler, Nigel H Lovell, and Jim Basilakis. 2003. Using information technology to improve the management of chronic disease . Medical Journal of Australia, Vol. 179, 5 (2003), 242--246. https://doi.org/10.5694/j.1326--5377.2003.tb05529.x

[12]

K Charmaz. 1983. Loss of self: a fundamental form of suffering in the chronically ill. Sociology of health & illness, Vol. 5, 2 (1983), 168--195. https://doi.org/10.1111/1467--9566.ep10491512

[13]

Kathy Charmaz and Liska Belgrave. 2012. Qualitative interviewing and grounded theory analysis . In The SAGE handbook of interview research: The complexity of the craft 2. 347--365.

[14]

Helen H. Chun and Richard A. Gatti. 2004. Ataxia-telangiectasia, an evolving phenotype . DNA Repair, Vol. 3, 8--9 (2004), 1187--1196. https://doi.org/10.1016/j.dnarep.2004.04.010

[15]

Noreen M. Clark. 2003. Management of Chronic Disease by Patients . Annual Review of Public Health, Vol. 24, 1 (2003), 289--313. https://doi.org/10.1146/annurev.publhealth.24.100901.141021

[16]

Eyal Cohen, Ashley Lacombe-Duncan, Karen Spalding, Jennifer MacInnis, David Nicholas, Unni G Narayanan, Michelle Gordon, Ivor Margolis, and Jeremy N Friedman. 2012. Integrated complex care coordination for children with medical complexity: a mixed-methods evaluation of tertiary care-community collaboration . BMC health services research, Vol. 12 (2012), 366.

[17]

Eric A Coleman, Carla Parry, Sandra Chalmers, and Sung-joon Min. 2006. The care transitions intervention . Arch Intern Med, Vol. 166 (2006), 1822--28.

[18]

Juliet Corbin and Anselm Strauss. 1985. Managing chronic illness at home: Three lines of work . Qualitative Sociology, Vol. 8, 3 (1985), 224--247. https://doi.org/10.1007/BF00989485

[19]

Thomas O. Crawford, R. L. Skolasky, R. Fernandez, K. J. Rosquist, and H. M. Lederman. 2006. Survival probability in ataxia telangiectasia . Archives of Disease in Childhood, Vol. 91, 7 (2006), 610--611. https://doi.org/10.1136/adc.2006.094268

[20]

Andrea Docherty, Alastair Owens, Mohsen Asadi-Lari, Roland Petchey, Jacky Williams, and Yvonne H. Carter. 2008. Knowledge and information needs of informal caregivers in palliative care: A qualitative systematic review . Palliative Medicine, Vol. 22, 2 (2008), 153--171. https://doi.org/10.1177/0269216307085343

[21]

Maya Doyle. 2014. Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study . Patient, Vol. 8, 1 (2014), 65--73. https://doi.org/10.1007/s40271-014-0085--9

[22]

Ezekiel J Emanuel and Linda L Emanuel. 1992. Four models of the physician-patient relationship . JAMA, Vol. 267, 16 (1992), 2221--2226.

[23]

J E Epping-Jordan. 2004. Improving the quality of health care for chronic conditions . Quality and Safety in Health Care, Vol. 13, 4 (2004), 299--305. https://doi.org/10.1136/qshc.2004.010744

[24]

Ronald M Epstein and Richard L Street. 2011. The values and Value of patient-centered care . Annals of Family Medicine, Vol. 9, 2 (2011), 100--103. https://doi.org/10.1370/afm.1239

[25]

Joanna H Fanos and Margaret-anne Mackintosh. 1999. Never Again Joy Without Sorrow : The Effect on Parents of a Child With Ataxia-Telangiectasia . American Journal of Medical Genetics, Vol. 87 (1999), 413--419.

[26]

Lila J Finney Rutten, Neeraj K Arora, Alexis D Bakos, Noreen Aziz, and Julia Rowland. 2005. Information needs and sources of information among cancer patients: a systematic review of research (1980--2003) . Patient education and counseling, Vol. 57 (2005), 250--261. https://doi.org/10.1016/j.pec.2004.06.006

[27]

Michael G Fitzgerald, James M Bean, Sanjay R Hegde, Hilal Unsap, Deborah J Macdonald, D Paul Harkin, Dianne M Finkelstein, Kurt J Isselbacher, and Daniel A Haber. 1997. Heterozygous ATM mutations do not contribute to early onset of breast cancer . Nature genetics, Vol. 15, 3 (1997), 307--310.

[28]

Susannah Fox and Maeve Duggan. 2013. The Diagnosis Difference. A portrait of the 45% of U.S. adults living with chronic health conditions. Technical Report November. Pew Research Center.

[29]

Susannah Fox and Kristen Purcell. 2010. Chronic Disease and the Internet. Technical Report. 1--35 pages. https://doi.org/10.1071/PY04018

[30]

Jeana Frost, Ivar E. Vermeulen, and Nienke Beekers. 2014. Anonymity versus privacy: Selective information sharing in online cancer communities . Journal of Medical Internet Research, Vol. 16, 5 (2014), 1--11. https://doi.org/10.2196/jmir.2684

[31]

Henk Jan Guchelaar, Hadewig B B Colen, Mathijs D. Kalmeijer, Patrick T W Hudson, and Irene M. Teepe-Twiss. 2005. Medication errors: hospital pharmacist perspective . Drugs, Vol. 65, 13 (2005), 1735--1746. https://doi.org/10.2165/00003495--200565130-00001

[32]

Tonje Gundersen. 2011. 'One wants to know what a chromosome is': The internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder . Sociology of Health and Illness, Vol. 33, 1 (2011), 81--95. https://doi.org/10.1111/j.1467--9566.2010.01277.x

[33]

Shefali Haldar, Sonali R Mishra, and Maher Khelifi. 2019. The Value of Patient-Peer Support in Improving Hospital Safety . Conference on Information Technology (2019), 152--156. https://doi.org/10.3233/978--1--61499--951--5--152

[34]

Alexandra Harrison and Marja Verhoef. 2002. Understanding coordination of care from the consumer's perspective in a regional health system. Health Services Research, Vol. 37, 4 (2002), 1031--1054. https://doi.org/10.1034/j.1600-0560.2002.64.x

[35]

Andrea L Hartzler, Megan N Taylor, Albert Park, Troy Griffiths, Uba Backonja, David W McDonald, Sam Wahbeh, Cory Brown, and Wanda Pratt. 2016. Leveraging cues from person-generated health data for peer matching in online communities . Journal of the American Medical Informatics Association (2016), ocv175. https://doi.org/10.1093/jamia/ocv175

[36]

Judith H. Hibbard and Jessica Greene. 2013. What the evidence shows about patient activation: Better health outcomes and care experiences; fewer data on costs . Health Affairs, Vol. 32, 2 (2013), 207--214. https://doi.org/10.1377/hlthaff.2012.1061

[37]

Mette Terp Høybye, Christoffer Johansen, and Tine Tjørnhøj-Thomsen. 2005. Online interaction. Effects of storytelling in an internet breast cancer support group . Psycho-oncology, Vol. 14, 3 (2005), 211--20. https://doi.org/10.1002/pon.837

[38]

Jina Huh and Mark S Ackerman. 2012. Collaborative Help in Chronic Disease Management: Supporting Individualized Problems. In Proceedings of the ACM 2012 conference on Computer Supported Cooperative Work. ACM, 853--862.

Digital Library

[39]

Jina Huh and Wanda Pratt. 2014. Weaving clinical expertise in online health communities. In Proceedings of the 32nd annual ACM conference on Human factors in computing systems . ACM, 1355--1364. https://doi.org/10.1145/2556288.2557293

Digital Library

[40]

Maia Jacobs, James Clawson, and Elizabeth D Mynatt. 2015. Comparing Health Information Sharing Preferences of Cancer Patients, Doctors, and Navigators. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW '15) . ACM, 808--818. https://doi.org/10.1145/2675133.2675252

Digital Library

[41]

Maia Jacobs, Jeremy Johnson, and Elizabeth D Mynatt. 2018. MyPath: Investigating Breast Cancer Patients' Use of Personalized Health Information . Proc. ACM Hum.-Comput. Interact., Vol. 2, CSCW (2018), 78:1---78:21. https://doi.org/10.1145/3274347

Digital Library

[42]

Suman Jayadev and Thomas D. Bird. 2013. Hereditary ataxias: Overview . Genetics in Medicine, Vol. 15, 9 (2013), 673--683. https://doi.org/10.1038/gim.2013.28

[43]

Allen C. Johnston, James L. Worrell, Paul M.Di Gangi, and Molly Wasko. 2013. Online health communities: An assessment of the influence of participation on patient empowerment outcomes . Information Technology and People, Vol. 26, 2 (2013), 213--235. https://doi.org/10.1108/ITP-02--2013-0040

[44]

Quentin Jones, Gilad Ravid, and Sheizaf Rafaeli. 2004. Information overload and the message dynamics of online interaction spaces: A theoretical model and empirical exploration . Information Systems Research, Vol. 15, 2 (2004), 194--211. https://doi.org/10.1287/isre.1040.0023

Digital Library

[45]

Rahul Khanna, S. Suresh Madhavan, Michael J. Smith, Julie H. Patrick, Cindy Tworek, and Barbara Becker-Cottrill. 2011. Assessment of health-related quality of life among primary caregivers of children with Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, Vol. 41, 9 (2011), 1214--1227. https://doi.org/10.1007/s10803-010--1140--6

[46]

Predrag Klasnja and Wanda Pratt. 2012. Healthcare in the pocket: mapping the space of mobile-phone health interventions . Journal of biomedical informatics, Vol. 45, 1 (feb 2012), 184--98. https://doi.org/10.1016/j.jbi.2011.08.017

Digital Library

[47]

Anna Kole and Francc ois Faurisson. 2009. The Voice of 12,000 Patients: Experiences and Expectations of Rare Disease Patients on Diagnosis and Care in Europe. Technical Report.

[48]

Sira Korpaisarn and Joshua D. Safer. 2018. Gaps in transgender medical education among healthcare providers: A major barrier to care for transgender persons . Reviews in Endocrine and Metabolic Disorders, Vol. 19, 3 (2018), 271--275. https://doi.org/10.1007/s11154-018--9452--5

[49]

D Kralik, T Koch, K Price, and N Howard. 2004. Chronic conditions and self management: taking action to create order. Journal of Clinical Nursing, Vol. 13 (2004), 259--267.

[50]

Sharon Lawn, John McMillan, and Mariastella Pulvirenti. 2011. Chronic condition self-management: Expectations of responsibility . Patient Education and Counseling, Vol. 84, 2 (2011), e5--e8. https://doi.org/10.1016/j.pec.2010.07.008

[51]

Leslie S. Liu, Patrick C. Shih, and Gillian R. Hayes. 2011. Barriers to the adoption and use of personal health record systems . iConference '11 (2011), 363--370. https://doi.org/10.1145/1940761.1940811

[52]

Daniel R. Longo, Shari L. Schubert, Barbara A. Wright, Joseph Lemaster, Casey D. Williams, and John N. Clore. 2010. Health information seeking, receipt, and use in diabetes self-management . Annals of Family Medicine, Vol. 8, 4 (2010), 334--340. https://doi.org/10.1370/afm.1115

[53]

Kate Lorig. 2004. Patient Self-Management: A Key to Effectiveness and Efficiency in Care of Chronic Disease . Public Health Reports, Vol. 119, June (2004), 239--243. https://doi.org/10.1016/j.phr.2004.04.002

[54]

Kate R. Lorig, David S. Sobel, Anita L. Stewart, Byron William Brown, Albert Bandura, Philip Ritter, Virginia M. Gonzalez, Diana D. Laurent, and Halsted R. Holman. 1999. Evidence Suggesting That a Chronic Disease Self-Management Program Can Improve Health Status While Reducing Hospitalization . Medical Care, Vol. 37, 1 (1999), 5--14. https://doi.org/10.1097/00005650--199901000-00003

[55]

Haley MacLeod. 2015. Rare World. In Proceedings of the 33rd Annual ACM Conference on human factors in computing systems. ACM, 1145--1154. https://doi.org/10.1145/2851581.2859026

[56]

Haley Macleod, Grace Bastin, Leslie S Liu, Katie Siek, and Kay Connelly. 2017. "Be Grateful You Don't Have a Real Disease": Understanding Rare Disease Relationships . Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17) (2017), 1660--1673. https://doi.org/10.1145/3025453.3025796

Digital Library

[57]

Gregory Makoul and Marla L. Clayman. 2006. An integrative model of shared decision making in medical encounters . Patient Education and Counseling, Vol. 60, 3 (2006), 301--312. https://doi.org/10.1016/j.pec.2005.06.010

[58]

Diane Maloney-Krichmar and Jenny Preece. 2005. A multilevel analysis of sociability, usability, and community dynamics in an online health community . ACM Transactions on Computer-Human Interaction, Vol. 12, 2 (2005), 201--232. https://doi.org/10.1145/1067860.1067864

Digital Library

[59]

Lena Mamykina, Drashko Nakikj, and Noemie Elhadad. 2015. Collective Sensemaking in Online Health Forums . In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems. ACM, 3217--3226. https://doi.org/10.1145/2702123.2702566

Digital Library

[60]

Michael Massimi, Jackie Bender, Holly O Witteman, and Osman Hassan Ahmed. 2014. Life Transitions and Online Health Communities: Reflecting on Adoption, Use, and Disengagement. In Proceedings of the SIGCHI Conference on Computer Support Cooperative Work (CSCW '14). ACM, 1491--1501. https://doi.org/10.1145/2531602.2531622

Digital Library

[61]

L. McCann, R. Maguire, M. Miller, and N. Kearney. 2009. Patients' perceptions and experiences of using a mobile phone-based advanced symptom management system (ASyMS) to monitor and manage chemotherapy related toxicity . European Journal of Cancer Care, Vol. 18, 2 (2009), 156--164. https://doi.org/10.1111/j.1365--2354.2008.00938.x

[62]

Irena Melnikova. 2012. From the analyst's couch: Rare diseases and orphan drugs . Nature Reviews Drug Discovery, Vol. 11, 4 (2012), 267--268. https://doi.org/10.1038/nrd3654

[63]

Helena M. Mentis, Anita Komlodi, Katrina Schrader, Michael Phipps, Ann Gruber-Baldini, Karen Yarbrough, and Lisa Shulman. 2017. Crafting a View of Self-Tracking Data in the Clinical Visit. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems . 5800--5812. https://doi.org/10.1145/3025453.3025589

Digital Library

[64]

Scott A Murray, Marilyn Kendall, Kirsty Boyd, and Aziz Sheikh. 2005. Illness trajectories and palliative care. BMJ (Clinical research ed.), Vol. 330, 7498 (2005), 1007--1011. https://doi.org/10.1136/bmj.330.7498.1007

[65]

Drashko Nakikj and Lena Mamykina. 2017. A Park or A Highway: Overcoming Tensions in Designing for Socio-emotional and Informational Needs in Online Health Communities . ACM Conference on Computer-Supported Cooperative Work and Social Computing (2017), 1--15. https://doi.org/10.1145/2998181.2998339

Digital Library

[66]

Priya Nambisan. 2011. Information seeking and social support in online health communities: impact on patients' perceived empathy . Journal of the American Medical Informatics Association, Vol. 18, 3 (2011), 298--304. https://doi.org/10.1136/amiajnl-2010-000058

[67]

Sun Young Park and Yunan Chen. 2017. Patient Strategies As Active Adaptation: Understanding Patient Behaviors During an Emergency Visit. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '17). 880--892. https://doi.org/10.1145/3025453.3025978

Digital Library

[68]

Susan Perlman, Sara Becker-Catania, and Richard A. Gatti. 2003. Ataxia-Telangiectasia: Diagnosis and Treatment . Seminars in Pediatric Neurology, Vol. 10, 3 (2003), 173--182. https://doi.org/10.1016/S1071--9091(03)00026--3

[69]

Madhu C. Reddy and Patricia Ruma Spence. 2008. Collaborative information seeking: A field study of a multidisciplinary patient care team . Information Processing & Management, Vol. 44, 1 (jan 2008), 242--255. https://doi.org/10.1016/j.ipm.2006.12.003

Digital Library

[70]

Ellen L. Rubenstein. 2013. ”They Are Always There for Me”: The Convergence of Social Support and Information in an Online Breast Cancer Community . International Review of Research in Open and Distance Learning, Vol. 14, 4 (2013), 90--103. https://doi.org/10.1002/asi arxiv: 0803.1716

[71]

Sarah Hudson Scholle, Phyllis Torda, Deborah Peikes, Esther Han, and Janice Genevro. 2010. Engaging patients and families in the medical home. Technical Report. Mathematica Policy Research.

[72]

Dena Schulman-Green, Elizabeth H. Bradley, M Tish Knobf, Holly Prigerson, Michael P DiGiovanna, and Ruth McCorkle. 2011. Self-Management and Transitions in Women With Advanced Breast Cancer . Journal of Pain and Symptom Management, Vol. 42, 4 (2011), 517--525. https://doi.org/10.1016/j.jpainsymman.2010.12.007

[73]

Pao Siangliulue, Joel Chan, Steven P Dow, and Krzysztof Z Gajos. 2016. IdeaHound: Improving Large-scale Collaborative Ideation with Crowd-powered Real-time Semantic Modeling . Proceedings of the 29th Annual Symposium on User Interface Software and Technology (2016), 609---624. https://doi.org/10.1145/2984511.2984578

Digital Library

[74]

Leigh A. Simmons, Ruth Q. Wolever, Elizabeth M. Bechard, and Ralph Snyderman. 2014. Patient engagement as a risk factor in personalized health care: A systematic review of the literature on chronic disease . Genome Medicine, Vol. 6, 2 (2014). https://doi.org/10.1186/gm533

[75]

T. Stankovic, A.M.J. Kidd, A. Sutcliffe, G.M. McGuire, P. Robinson, P. Weber, T. Bedenham, A.R. Bradwell, D.F. Easton, G.G. Lennox, N. Haites, P.J. Byrd, and A.M.R. Taylor. 1998. ATM Mutations and Phenotypes in Ataxia-Telangiectasia Families in the British Isles: Expression of Mutant ATM and the Risk of Leukemia, Lymphoma, and Breast Cancer . The American Journal of Human Genetics, Vol. 62, 2 (1998), 334--345. https://doi.org/10.1086/301706

[76]

Christopher J. Stille and Richard C. Antonelli. 2004. Coordination of care for children with special health care needs . Current Opinion in Pediatrics, Vol. 16, 6 (2004), 700--705. https://doi.org/10.1097/01.mop.0000144442.68016.92

[77]

Kenton T Unruh and Wanda Pratt. 2008a. Barriers to organizing information during cancer care: "I don't know how people do it". In American Medical Informatics Association Annual Symposium Proceedings (AMIA '08). American Medical Informatics Association, 742--746.

[78]

Kenton T Unruh and Wanda Pratt. 2008b. The Invisible Work of Being a Patient and Implications for Health Care: "[the doctor is] my business partner in the most important business in my life, staying alive" . EPIC '08 (nov 2008), 34--44. https://doi.org/10.1111/j.1559--8918.2008.tb00093.x

[79]

Xi Wang, Kang Zhao, and Nick Street. 2014. Social Support and User Engagement in Online Health Communities. In International Conference on Smart Health. Springer, Cham, 97--110.

[80]

Yi-chia Wang, Robert Kraut, and John M Levine. 2012. To Stay or Leave? The Relationship of Emotional and Informational Support to Commitment in Online Health Support Groups. In Proceedings of the ACM 2012 conference on Computer Supported Cooperative Work. ACM, 833--842. https://doi.org/10.1145/2145204.2145329

[81]

Jennifer L Welbourne, Anita L Blanchard, and Marla D Boughton. 2009. Supportive Communication, Sense of Virtual Community and Health Outcomes in Online Infertility Groups. In Proceedings of the fourth international conference on Communities and technologies. ACM, 31--40.

Digital Library

[82]

Paul Wicks, Michael Massagli, Jeana Frost, Catherine Brownstein, Sally Okun, Timothy Vaughan, and James Heywood. 2010. Sharing Health Data for Better Outcomes on PatientsLikeMe . Journal of medical Internet research, Vol. 12, 2 (2010).

[83]

Amy X. Zhang, Lea Verou, and David Karger. 2017. Wikum . (2017), 2082--2096. https://doi.org/10.1145/2998181.2998235

[84]

Yan Zhang, Dan He, and Yoonmo Sang. 2013. Facebook as a platform for health information and communication: A case study of a diabetes group . Journal of Medical Systems, Vol. 37, 3 (2013). https://doi.org/10.1007/s10916-013--9942--7

[85]

Yvonne Zurynski, K. Frith, H. Leonard, and E. Elliott. 2008. Rare childhood diseases: How should we respond? Archives of Disease in Childhood, Vol. 93, 12 (2008), 1071--1074. https://doi.org/10.1136/adc.2007.134940

Cited By

Rabinowitz ERipley GLemek CAllen PDelahanty D(2024)High levels of Patient Self Advocacy may confound clinical research in understudied patient populationsJournal of Health Psychology10.1177/13591053241286643Online publication date: 30-Sep-2024
https://doi.org/10.1177/13591053241286643
Zehrung RReddy MChen Y(2024)Transitioning Together: Collaborative Work in Adolescent Chronic Illness ManagementProceedings of the ACM on Human-Computer Interaction10.1145/36869568:CSCW2(1-24)Online publication date: 8-Nov-2024
https://dl.acm.org/doi/10.1145/3686956
Patel SNikkhah SNadkarni SSuryawanshi PSureddi RBhoyar MKulkarni PJogadia DShimala SHarishchandrakar ASanaeipoor SMueller EMiller AFarzan RLópez CCardoso Llach DQuercia DMustafa MNiu SWong-Villacrés M(2024)Designing for Resilient Caregiving Coordination Journeys: Prioritizing Features Across Families and PhasesCompanion Publication of the 2024 Conference on Computer-Supported Cooperative Work and Social Computing10.1145/3678884.3681901(525-532)Online publication date: 11-Nov-2024
https://dl.acm.org/doi/10.1145/3678884.3681901
Show More Cited By

Index Terms

"I think we know more than our doctors": How Primary Caregivers Manage Care Teams with Limited Disease-related Expertise
1. Human-centered computing
  1. Collaborative and social computing
    1. Empirical studies in collaborative and social computing

Recommendations

Comprehensive diabetes management program (CDMP)
Telehealth/AT '08: Proceedings of the IASTED International Conference on Telehealth/Assistive Technologies

The Comprehensive Diabetes Management Program (CDMP) is a web-based diabetes medical informatics tool developed by a consortium of researchers, physicians, and educators specializing in diabetes and its management. The overall goal behind the ...
Rare World: Towards Technology for Rare Diseases
CHI '15: Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems

Researchers have created innovative technological solutions to support people with common chronic illnesses. In this study, we investigate design opportunities for people with rare diseases who are not well studied or have smaller populations to work ...
An ontology-based approach to patient follow-up assessment for continuous and personalized chronic disease management

Display Omitted We developed customizable assessment models for chronic disease follow-ups.We adapted HL7 Virtual Medical Record for monitoring chronically ill patients.We realized knowledge sharing and reuse in the chronic diseases domain.We developed ...

Comments

Please enable JavaScript to view thecomments powered by Disqus.

Information & Contributors

Information

Published In

cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 3, Issue CSCW

November 2019

5026 pages

EISSN:2573-0142

DOI:10.1145/3371885

Editors:
Airi Lampinen
Stockholm University, Sweden
,
Darren Gergle
Northwestern University, USA
,
David A. Shamma
FXPAL, USA

Issue’s Table of Contents

Copyright © 2019 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: 07 November 2019

Published in PACMHCI Volume 3, Issue CSCW

Permissions

Request permissions for this article.

Request Permissions

Check for updates

Author Tags

Qualifiers

Research-article

Contributors

Other Metrics

View Article Metrics

Bibliometrics & Citations

Bibliometrics

Article Metrics

24
Total Citations
View Citations
463
Total Downloads

Downloads (Last 12 months)94
Downloads (Last 6 weeks)4

Reflects downloads up to 12 Jan 2025

Other Metrics

View Author Metrics

Citations

Cited By

Rabinowitz ERipley GLemek CAllen PDelahanty D(2024)High levels of Patient Self Advocacy may confound clinical research in understudied patient populationsJournal of Health Psychology10.1177/13591053241286643Online publication date: 30-Sep-2024
https://doi.org/10.1177/13591053241286643
Zehrung RReddy MChen Y(2024)Transitioning Together: Collaborative Work in Adolescent Chronic Illness ManagementProceedings of the ACM on Human-Computer Interaction10.1145/36869568:CSCW2(1-24)Online publication date: 8-Nov-2024
https://dl.acm.org/doi/10.1145/3686956
Patel SNikkhah SNadkarni SSuryawanshi PSureddi RBhoyar MKulkarni PJogadia DShimala SHarishchandrakar ASanaeipoor SMueller EMiller AFarzan RLópez CCardoso Llach DQuercia DMustafa MNiu SWong-Villacrés M(2024)Designing for Resilient Caregiving Coordination Journeys: Prioritizing Features Across Families and PhasesCompanion Publication of the 2024 Conference on Computer-Supported Cooperative Work and Social Computing10.1145/3678884.3681901(525-532)Online publication date: 11-Nov-2024
https://dl.acm.org/doi/10.1145/3678884.3681901
So JYang FGupta AGajos K(2024)"It's Better to be Grounded in Reality": a Speculative Exploration of Patient-Centered Digital Phenotyping for Neurological ConditionsProceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility10.1145/3663548.3688486(1-5)Online publication date: 27-Oct-2024
https://dl.acm.org/doi/10.1145/3663548.3688486
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
Lei QTang RHo HZhou HGuo JTang Z(2024)A Game of Love for Women: Social Support in Otome Game Mr. Love: Queen’s Choice in ChinaProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642306(1-15)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642306
Farshchian BMikalsen M(2024)Using a Service Lens to Better Understand Practices –and Vice VersaComputer Supported Cooperative Work10.1007/s10606-023-09478-333:3(499-551)Online publication date: 1-Sep-2024
https://dl.acm.org/doi/10.1007/s10606-023-09478-3
Davidson HGelles SKeller KZajdel MKoehly L(2023)Becoming a Rare Disease Parent: An Interpretative Phenomenological Analysis of Parent-Caregivers’ Postpartum ExperiencesQualitative Health Research10.1177/1049732323120541934:1-2(126-140)Online publication date: 25-Oct-2023
https://doi.org/10.1177/10497323231205419
Ankrah EMarathe MBhattacharya ARitt-Olson AMilam JTorno LHayes G(2023)Plan For Tomorrow: The Experience of Adolescent and Young Adult Childhood Cancer Survivors as they Transition to Adult CareProceedings of the ACM on Human-Computer Interaction10.1145/36102017:CSCW2(1-27)Online publication date: 4-Oct-2023
https://dl.acm.org/doi/10.1145/3610201
Lowy RLee CAbowd GKim J(2023)Building Causal Agency in Autistic Students through Iterative Reflection in Collaborative Transition PlanningProceedings of the ACM on Human-Computer Interaction10.1145/36100377:CSCW2(1-26)Online publication date: 4-Oct-2023
https://dl.acm.org/doi/10.1145/3610037
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