research-article

"Be Grateful You Don't Have a Real Disease": Understanding Rare Disease Relationships

Authors:

Kay ConnellyAuthors Info & Claims

CHI '17: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems

Pages 1660 - 1673

https://doi.org/10.1145/3025453.3025796

Published: 02 May 2017 Publication History

Abstract

We characterize how people with rare diseases consider their support needs as being met or neglected by different sources. After a 22-week study with 11 participants, we found that people with rare diseases identify strongly with their conditions but demonstrate a range of outlooks on their condition (positive, negative, and accepting). We found that participants think of themselves as being in a separate "Rare World" from the "normal" people in their lives and that relationships with friends and family members are strained. On the other hand, online communities were described as valuable sources of many forms of support, but do not adequately compensate for the lack of tangible support in offline relationships. We propose an approach to facilitating tangible support that leverages existing research on social matching, towards facilitating support among people with different rare diseases to overcome geographic and symptomatic challenges of coordinating support between people with the same rare disease.

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Index Terms

"Be Grateful You Don't Have a Real Disease": Understanding Rare Disease Relationships
1. Applied computing
  1. Life and medical sciences
2. Human-centered computing

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cover image ACM Conferences

CHI '17: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems

May 2017

7138 pages

ISBN:9781450346559

DOI:10.1145/3025453

General Chairs:
Gloria Mark
University of California Irvine
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Susan Fussell
Cornell University
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Program Chairs:
Cliff Lampe
University of Michigan
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m.c. schraefel
University of Southampton
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Juan Pablo Hourcade
University of Iowa
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Caroline Appert
Université Paris-Sud
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Daniel Wigdor
University of Toronto

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CHI '17

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SIGCHI

CHI '17: CHI Conference on Human Factors in Computing Systems

May 6 - 11, 2017

Colorado, Denver, USA

Acceptance Rates

CHI '17 Paper Acceptance Rate 600 of 2,400 submissions, 25%;

Overall Acceptance Rate 6,199 of 26,314 submissions, 24%

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Bibliometrics & Citations

Bibliometrics

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43
Total Citations
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740
Total Downloads

Downloads (Last 12 months)152
Downloads (Last 6 weeks)7

Reflects downloads up to 22 Sep 2024

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Citations

Cited By

Noh HYoon SJo HVan Kleek MKang Y(2024)Starting a New Life after Crossing the Tumen River: How North Korean Defectors Use Digital Technology in TransitionProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642892(1-26)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642892
Smith CMiller Hillberg HLevonian Z(2023)"Thoughts & Prayers" or " ❤️ & 🙏 ": How the Release of New Reactions on CaringBridge Reshapes Supportive Communication in Health CrisesProceedings of the ACM on Human-Computer Interaction10.1145/36100357:CSCW2(1-39)Online publication date: 4-Oct-2023
https://dl.acm.org/doi/10.1145/3610035
Bhat KIsmail AHall AKarusala NMentis HVines JKumar N(2023)The Future of Hybrid Care and Wellbeing in HCIExtended Abstracts of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544549.3573829(1-5)Online publication date: 19-Apr-2023
https://dl.acm.org/doi/10.1145/3544549.3573829
Min AMiller WRocha LBörner KBrattig Correia RShih P(2023)Understanding Contexts and Challenges of Information Management for Epilepsy CareProceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3580949(1-15)Online publication date: 19-Apr-2023
https://dl.acm.org/doi/10.1145/3544548.3580949
Bhat KKumar NShamanna KKwatra NJain M(2023)Towards Intermediated Workflows for Hybrid TelemedicineProceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3580653(1-17)Online publication date: 19-Apr-2023
https://dl.acm.org/doi/10.1145/3544548.3580653
Nguyen HGhanem T(2023)A Classification Approach to Detect Social Support in Online Health Communities2023 IEEE International Conference on Big Data (BigData)10.1109/BigData59044.2023.10386442(4891-4899)Online publication date: 15-Dec-2023
https://doi.org/10.1109/BigData59044.2023.10386442
Alqassim MKresnye KSiek KLee JWolters M(2022)The miscarriage circle of care: towards leveraging online spaces for social supportBMC Women's Health10.1186/s12905-022-01597-122:1Online publication date: 29-Jan-2022
https://doi.org/10.1186/s12905-022-01597-1
Agapie EHaldar SPoblete S(2022)Using HCI in Cross-Disciplinary Teams: A Case Study of Academic Collaboration in HCI-Health Teams in the US Using a Team Science PerspectiveProceedings of the ACM on Human-Computer Interaction10.1145/35556106:CSCW2(1-35)Online publication date: 11-Nov-2022
https://dl.acm.org/doi/10.1145/3555610
Efstratiou ADe Cristofaro E(2022)Adherence to Misinformation on Social Media Through Socio-Cognitive and Group-Based ProcessesProceedings of the ACM on Human-Computer Interaction10.1145/35555896:CSCW2(1-35)Online publication date: 11-Nov-2022
https://dl.acm.org/doi/10.1145/3555589
Smith CAlam ITan CKeegan BBlanchard A(2022)The Impact of Governance Bots on Sense of Virtual CommunityProceedings of the ACM on Human-Computer Interaction10.1145/35555636:CSCW2(1-30)Online publication date: 11-Nov-2022
https://dl.acm.org/doi/10.1145/3555563
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