ACM Digital Library home
ACM home
Advanced Search
10.1145/3491102.3517544acmconferencesArticle/Chapter ViewAbstractPublication PageschiConference Proceedingsconference-collections
research-article
Open Access

When Worlds Collide: Boundary Management of Adolescent and Young Adult Childhood Cancer Survivors and Caregivers

Authors Info & Claims
CHI '22: Proceedings of the 2022 CHI Conference on Human Factors in Computing SystemsApril 2022Article No.: 523Pages 1–16https://doi.org/10.1145/3491102.3517544
Published:29 April 2022Publication History
  • 0citation
  • 354
  • Downloads
Metrics
Total Citations0
Total Downloads354
Last 12 Months349
Last 6 weeks50
  • PDF

CHI '22: Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems

When Worlds Collide: Boundary Management of Adolescent and Young Adult Childhood Cancer Survivors and Caregivers
Pages 1–16
PreviousChapterNextChapter

ABSTRACT

Adolescent and young adult childhood cancer survivors experience health complications, late or long-term biomedical complications, as well as economic and psychosocial challenges that can have a lifelong impact on their quality-of-life. As childhood cancer survivors transition into adulthood, they must learn to balance their identity development with demands of everyday life and the near- and long-term consequences of their cancer experience, all of which have implications for the ways they use existing technologies and the design of novel technologies. In this study, we interviewed 24 childhood cancer survivors and six caregivers about their cancer survivorship experiences. The results of our analysis indicate that the challenges of transitioning to adulthood as a cancer survivor necessitate the development and management of multiple societal, relational, and personal boundaries, processes that social computing technologies can help or hinder. This paper contributes to the empirical understanding of adolescent and young adult cancer survivors’ social experiences. We further contribute sociotechnical design provocations for researchers, designers, and community members to support survivors.

Skip Supplemental Material Section

Supplemental Material

3491102.3517544-talk-video.mp4

Talk Video

mp4

32.5 MB

Play streamDownload

References

  1. Rikke Aarhus and Stinne Aaløkke Ballegaard. 2010. Negotiating boundaries: Managing disease at home. Conference on Human Factors in Computing Systems - Proceedings 2, (2010), 1223–1232. DOI:https://doi.org/10.1145/1753326.1753509Google ScholarGoogle ScholarDigital LibraryDigital Library
  2. Mohsen Adib-Hajbaghery and Bahareh Ahmadi. 2019. Caregiver Burden and Its Associated Factors in Caregivers of Children and Adolescents with Chronic Conditions. Int J Community Based Nurs Midwifery 7, 4 (October 2019), 258–269. DOI:https://doi.org/10.30476/IJCBNM.2019.73893.0Google ScholarGoogle Scholar
  3. Jane Andrew and Max Baker. 2021. The General Data Protection Regulation in the Age of Surveillance Capitalism. Journal of Business Ethics 168, 3 (2021), 565–578. Retrieved January 10, 2022 from https://ideas.repec.org/a/kap/jbuset/v168y2021i3d10.1007_s10551-019-04239-z.htmlGoogle ScholarGoogle ScholarCross RefCross Ref
  4. Blake E. Ashforth and Ronald H. Humphrey. 1993. Emotional Labor in Service Roles: The Influence of Identity. AMR 18, 1 (January 1993), 88–115. DOI:https://doi.org/10.5465/amr.1993.3997508Google ScholarGoogle ScholarCross RefCross Ref
  5. Blake E. Ashforth, Glen E. Kreiner, and Mel Fugate. 2000. All in a Day's Work: Boundaries and Micro Role Transitions. The Academy of Management Review 25, 3 (2000), 472. DOI:https://doi.org/10.2307/259305Google ScholarGoogle ScholarCross RefCross Ref
  6. Noreen M. Aziz and Julia H. Rowland. 2003. Trends and advances in cancer survivorship research: Challenge and opportunity. In Seminars in Radiation Oncology, W.B. Saunders, 248–266. DOI:https://doi.org/10.1016/S1053-4296(03)00024-9Google ScholarGoogle Scholar
  7. Karla Badillo-Urquiola, Scott Harpin, and Pamela Wisniewski. 2017. Abandoned but Not Forgotten: Providing Access While Protecting Foster Youth from Online Risks. In Proceedings of the 2017 Conference on Interaction Design and Children (IDC ’17), Association for Computing Machinery, New York, NY, USA, 17–26. DOI:https://doi.org/10.1145/3078072.3079724Google ScholarGoogle ScholarDigital LibraryDigital Library
  8. Lisa Bashore, Kathy Ruccione, Ann H. Johnson, Joanne Quillen, Karen Johnston, and Wendy Hobbie. 2020. Cancer survivorship in the era of precision health. In Pediatric Oncology. Springer, 251–274. DOI:https://doi.org/10.1007/978-3-030-25804-7_14Google ScholarGoogle Scholar
  9. David J. Bearison and Caesar Pacifici. 1984. Psychological studies of children who have cancer. Journal of Applied Developmental Psychology 5, 4 (1984), 263–280. DOI:https://doi.org/10.1016/0193-3973(84)90001-7Google ScholarGoogle ScholarCross RefCross Ref
  10. Dori Michelle Beeler. 2020. When my four-year-old got cancer: a retrospective on resilience in a paediatric oncology ward. Anthropology and Medicine 27, 3 (July 2020), 347–362. DOI:https://doi.org/10.1080/13648470.2019.1689071Google ScholarGoogle ScholarCross RefCross Ref
  11. Kirsten Bell and Svetlana Ristovski-Slijepcevic. 2013. Cancer survivorship: why labels matter. J Clin Oncol 31, 4 (February 2013), 409–411. DOI:https://doi.org/10.1200/JCO.2012.43.5891Google ScholarGoogle ScholarCross RefCross Ref
  12. Farnaz Irannejad Bisafar and Andrea Grimes Parker. 2016. Confidence & control: Examining adolescent preferences for technologies that promote wellness. In Proceedings of the ACM Conference on Computer Supported Cooperative Work, CSCW, Association for Computing Machinery, 160–171. DOI:https://doi.org/10.1145/2818048.2820028Google ScholarGoogle ScholarDigital LibraryDigital Library
  13. Christina G. Blanchard, Terrance L. Albrecht, John C. Ruckdeschel, Charles H. Grant, and Rebecca Malcolm Hemmick. 1995. The role of social support in adaptation to cancer and to survival. Journal of Psychosocial Oncology 13, 1–2 (1995), 75–95. DOI:https://doi.org/10.1300/J077V13N01_05Google ScholarGoogle ScholarCross RefCross Ref
  14. Archie Bleyer. 2005. The adolescent and young adult gap in cancer care and outcome. Current Problems in Pediatric and Adolescent Health Care 35, 5 (May 2005), 182–217. DOI:https://doi.org/10.1016/j.cppeds.2005.02.001Google ScholarGoogle ScholarCross RefCross Ref
  15. Susanne Bødker, Jannie F. Kristensen, Christina Nielsen, and Werner Sperschneider. 2003. Technology for boundaries. Proceedings of the International ACM SIGGROUP Conference on Supporting Group Work (2003), 311–320. DOI:https://doi.org/10.1145/958208.958210Google ScholarGoogle ScholarDigital LibraryDigital Library
  16. Phil Brown. 2016. Naming and Framing: The Social Construction of Diagnosis and Illness. Journal of Health and Social Behaviour 366, May (2016), 34–52.Google ScholarGoogle Scholar
  17. Eleanor R. Burgess, Madhu C. Reddy, Andrew Davenport, Paul Laboi, and Ann Blandford. 2019. Tricky to get your head around. In Conference on Human Factors in Computing Systems - Proceedings, 1–17. DOI:https://doi.org/10.1145/3290605.3300895Google ScholarGoogle ScholarDigital LibraryDigital Library
  18. Jacquelyn Burkell and Alexandre Fortier. 2013. Privacy policy disclosures of behavioural tracking on consumer health websites. Proceedings of the ASIST Annual Meeting 50, 1 (2013). DOI:https://doi.org/10.1002/meet.14505001087Google ScholarGoogle ScholarCross RefCross Ref
  19. Jacqueline Casillas, Kevin C. Oeffinger, Melissa M. Hudson, Mark L. Greenberg, Mark W. Yeazel, Kirsten K. Ness, Tara O. Henderson, Leslie L. Robison, Gregory T. Armstrong, Qi Liu, Wendy Leisenring, Yutaka Yasui, and Paul C. Nathan. 2015. Identifying Predictors of Longitudinal Decline in the Level of Medical Care Received by Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study. Health Services Research 50, 4 (2015), 1021–1042. DOI:https://doi.org/10.1111/1475-6773.12282Google ScholarGoogle ScholarCross RefCross Ref
  20. Marta E. Cecchinato, Anna L. Cox, and Jon Bird. 2017. Always On(line)? User experience of smartwatches and their role within multi-device ecologies. Conference on Human Factors in Computing Systems - Proceedings 2017-May, (2017), 3557–3568. DOI:https://doi.org/10.1145/3025453.3025538Google ScholarGoogle ScholarDigital LibraryDigital Library
  21. Children's Oncology Group. 2018. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Version 5.0. Retrieved September 9, 2021 from http://www.survivorshipguidelines.org/Google ScholarGoogle Scholar
  22. Katie A. Devine, Adrienne S. Viola, Elliot J. Coups, and Yelena P. Wu. 2018. Digital Health Interventions for Adolescent and Young Adult Cancer Survivors. JCO Clinical Cancer Informatics 2 (2018), 1–15. DOI:https://doi.org/10.1200/cci.17.00138Google ScholarGoogle ScholarCross RefCross Ref
  23. Jordan Eschler, Arpita Bhattacharya, and Wanda Pratt. 2018. Designing a reclamation of body and health: cancer survivor tattoos as coping ritual. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems, Montréal, QC, Canada, 1–12. DOI:https://doi.org/10.1145/3173574.3174084Google ScholarGoogle ScholarDigital LibraryDigital Library
  24. Jordan Eschler, Zakariya Dehlawi, and Wanda Pratt. 2015. Self-characterized Illness Phase and Information Needs of Participants in an Online Cancer Forum. In Proceedings of the International Conference on Web and Social Media (ICWSM). Retrieved from https://jordaneschlerdotcom.files.wordpress.com/2014/09/eschler-icwsm-2015.pdfGoogle ScholarGoogle Scholar
  25. Jordan Eschler and Wanda Pratt. 2017. “I'm so glad i met you”: Designing dynamic collaborative support for young adult cancer survivors. Proceedings of the ACM Conference on Computer Supported Cooperative Work, CSCW (2017), 1763–1774. DOI:https://doi.org/10.1145/2998181.2998326Google ScholarGoogle ScholarDigital LibraryDigital Library
  26. Shelly Farnham, Lili Cheng, Linda Stone, Melora Zaner-Godsey, Christopher Hibbeln, Karen Syrjala, Ann Marie Clark, and Janet Abrams. 2002. HutchWorld: Clinical Study of Computer-Mediated Social Support for Cancer Patients and Their Caregivers. In Proceedings of the SIGCHI conference on Human factors in computing systems Changing our world, changing ourselves - CHI ’02, ACM Press, New York, New York, USA.Google ScholarGoogle ScholarDigital LibraryDigital Library
  27. Scott M. Gilbert, David C. Miller, Brent K. Hollenbeck, James E. Montie, and John T. Wei. 2008. Cancer survivorship: Challenges and changing paradigms. Journal of Urology 179, 431–438. DOI:https://doi.org/10.1016/j.juro.2007.09.029Google ScholarGoogle ScholarCross RefCross Ref
  28. Becky Wilson Hawbaker. 2007. Student-Led IEP Meetings: Planning and Implementation Strategies. Teaching Exceptional Children Plus 3, 5 (May 2007). Retrieved from http://escholarship.bc.edu/education/tecplus/vol3/iss5/art4Google ScholarGoogle Scholar
  29. Gillian R. Hayes, Gregory D. Abowd, John S. Davis, Marion L. Blount, Maria Ebling, and Elizabeth D. Mynatt. 2008. Opportunities for pervasive computing in chronic cancer care. In Lecture Notes in Computer Science (including subseries Lecture Notes in Artificial Intelligence and Lecture Notes in Bioinformatics), 262–279. DOI:https://doi.org/10.1007/978-3-540-79576-6_16Google ScholarGoogle Scholar
  30. Karen Holtzblatt, Jessamyn Burns Wendell, and Shelley Wood. 2004. Rapid Contextual Design: A How-to Guide to Key Techniques for User-Centered Design. Elsevier.Google ScholarGoogle ScholarDigital LibraryDigital Library
  31. Matthew K. Hong, Lauren Wilcox, Daniel Machado, Thomas A. Olson, and Stephen F. Simoneaux. 2016. Care Partnerships: Toward Technology to Support Teens’ Participation in Their Health Care. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI ’16), Association for Computing Machinery, New York, NY, USA, 5337–5349. DOI:https://doi.org/10.1145/2858036.2858508Google ScholarGoogle ScholarDigital LibraryDigital Library
  32. Peter S. Hovmand. 2014. Introduction to Community-Based System Dynamics. In Community Based System Dynamics. Springer New York, New York, NY, 1–16. DOI:https://doi.org/10.1007/978-1-4614-8763-0_1Google ScholarGoogle Scholar
  33. Institute of Medicine and National Research Council. 2006. Cancer Survivors. In From Cancer Patient to Cancer Survivor: Lost in Transition. DOI:https://doi.org/10.17226/11468Google ScholarGoogle Scholar
  34. Maia Jacobs, James Clawson, and Elizabeth D Mynatt. 2014. Cancer Navigation: Opportunities and Challenges for Facilitating the Breast Cancer Journey. (2014). DOI:https://doi.org/10.1145/2531602.2531645Google ScholarGoogle Scholar
  35. Maia Jacobs, James Clawson, and Elizabeth D. Mynatt. 2015. Comparing health information sharing preferences of cancer patients, doctors, and navigators. In CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing, Association for Computing Machinery, Inc, New York, New York, USA, 808–818. DOI:https://doi.org/10.1145/2675133.2675252Google ScholarGoogle Scholar
  36. Maia Jacobs, James Clawson, and Elizabeth D Mynatt. 2016. A Cancer Journey Framework: Guiding the Design of Holistic Health Technology Technology for Grief Support View project A Cancer Journey Framework: Guiding the Design of Holistic Health Technology. Proceedings of the 10th EAI International Conference on Pervasive Computing Technologies for Healthcare PervasiveHealth (May 2016), 114–121. DOI:https://doi.org/10.4108/eai.16-5-2016.2263333Google ScholarGoogle Scholar
  37. Maia Jacobs, Janice Hopkins, Matthew Mumber, and Elizabeth Mynatt. 2019. Usability Evaluation of an Adaptive Information Recommendation System for Breast Cancer Patients. In AMIA Annual Symposium Proceedings, 494–503.Google ScholarGoogle Scholar
  38. Maia Jacobs, Jeremy Johnson, and Elizabeth D Mynatt. 2018. MyPath: Investigating Breast Cancer Patients’ Use of Personalized Health Information. Proc. ACM Hum.-Comput. Interact. 2, CSCW (2018), 21. DOI:https://doi.org/10.1145/3274347Google ScholarGoogle ScholarDigital LibraryDigital Library
  39. Madeleine Marie Hortense Janin, Sarah Jane Ellis, Claire Elizabeth Wakefield, and Joanna Elizabeth Fardell. 2018. Talking About Cancer Among Adolescent and Young Adult Cancer Patients and Survivors: A Systematic Review. J Adolesc Young Adult Oncol 7, 5 (October 2018), 515–524. DOI:https://doi.org/10.1089/jayao.2017.0131Google ScholarGoogle Scholar
  40. Elizabeth Kaziunas, Ayse G Buyuktur, Jasmine Jones, Sung W Choi, David A Hanauer, and Mark S Ackerman. 2015. Transition and Reflection in the Use of Health Information: The Case of Pediatric Bone Marrow Transplant Caregivers. In CSCW ’15: Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing, 1763–1774. DOI:https://doi.org/10.1145/2675133.2675276Google ScholarGoogle ScholarDigital LibraryDigital Library
  41. Predrag Klasnja, Andrea Civan Hartzler, Kent T. Unruh, and Wanda Pratt. 2010. Blowing in the wind: Unanchored patient information work during cancer care. In Conference on Human Factors in Computing Systems - Proceedings, ACM Press, New York, New York, USA, 193–202. DOI:https://doi.org/10.1145/1753326.1753355Google ScholarGoogle ScholarDigital LibraryDigital Library
  42. Predrag Klasnja, Andrea Hartzler, Christopher Powell, and Wanda Pratt. 2011. Supporting cancer patients’ unanchored health information management with mobile technology. AMIA Annu Symp Proc 2011, (2011), 732–741. Retrieved December 30, 2021 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3243297/Google ScholarGoogle Scholar
  43. Rachel Klimmek and Jennifer Wenzel. 2012. Adaptation of the illness trajectory framework to describe the work of transitional cancer survivorship. Oncology Nursing Forum 39, 6 (November 2012), E499. DOI:https://doi.org/10.1188/12.ONF.E499-E510Google ScholarGoogle ScholarCross RefCross Ref
  44. Yuting Liao. 2019. Sharing personal health information on social media: Balancing self-presentation and privacy. ACM International Conference Proceeding Series (2019), 194–204. DOI:https://doi.org/10.1145/3328529.3328560Google ScholarGoogle ScholarDigital LibraryDigital Library
  45. Leslie S. Liu, Kori Inkpen, and Wanda Pratt. 2015. “i'm not like my friends”: Understanding how children with a chronic illness use technology to maintain normalcy. CSCW 2015 - Proceedings of the 2015 ACM International Conference on Computer-Supported Cooperative Work and Social Computing (2015), 1527–1539. DOI:https://doi.org/10.1145/2675133.2675201Google ScholarGoogle ScholarDigital LibraryDigital Library
  46. Jordan Gilleland Marchak, Brooke Cherven, Rebecca Williamson Lewis, Paula Edwards, Lillian R. Meacham, Michael Palgon, Cam Escoffery, and Ann C. Mertens. 2019. User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers. Supportive Care in Cancer (December 2019), 1–10. DOI:https://doi.org/10.1007/s00520-019-05199-wGoogle ScholarGoogle Scholar
  47. 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 17th ACM conference on Computer supported cooperative work & social computing, ACM, New York, NY, USA. Retrieved from http://dx.doi.org/10.1145/2531602.2531622Google ScholarGoogle ScholarDigital LibraryDigital Library
  48. 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: challenges and opportunities in using online social networks for health. In Proceedings of the ACM 2011 conference on Computer supported cooperative work (CSCW ’11), Association for Computing Machinery, New York, NY, USA, 341–350. DOI:https://doi.org/10.1145/1958824.1958876Google ScholarGoogle ScholarDigital LibraryDigital Library
  49. Quyen Ngo-Metzger, Gillian R. Hayes, null Yunan Chen, Ralph Cygan, and Craig F. Garfield. 2010. Improving communication between patients and providers using health information technology and other quality improvement strategies: focus on Asian Americans. Med Care Res Rev 67, 5 Suppl (October 2010), 231S-245S. DOI:https://doi.org/10.1177/1077558710375432Google ScholarGoogle Scholar
  50. Christena E. Nippert-Eng. 1996. Home and Work Negotiating Boundaries through Everyday Life. University of Chicago Press, Chicago, IL.Google ScholarGoogle Scholar
  51. Antonio Noguera, Sriram Yennurajalingam, Isabel Torres-Vigil, Henrique Afonseca Parsons, Eva Rosina Duarte, Alejandra Palma, Sofia Bunge, J. Lynn Palmer, and Eduardo Bruera. 2014. Decisional Control Preferences, Disclosure of Information Preferences, and Satisfaction Among Hispanic Patients With Advanced Cancer. J Pain Symptom Manage 47, 5 (May 2014), 896–905. DOI:https://doi.org/10.1016/j.jpainsymman.2013.06.010Google ScholarGoogle ScholarCross RefCross Ref
  52. Office for Civil Rights. 2020. Protecting Students With Disabilities. U.S. Department of Education. Retrieved September 7, 2021 from https://www2.ed.gov/about/offices/list/ocr/504faq.htmlGoogle ScholarGoogle Scholar
  53. Office of Special Education and Rehabilitative Services. 2000. IEP Guide. U.S. Department of Education. Retrieved September 7, 2021 from https://www2.ed.gov/parents/needs/speced/iepguide/iepguide.pdfGoogle ScholarGoogle Scholar
  54. Sun Young Park, Woosuk Seo, Andrew B.L. Berry, Hyeryoung Kim, Sanya Verma, Sung Won Choi, and Ayse G. Buyuktur. 2020. Learning from Positive Adaptations of Pediatric Cancer Patients to Design Health Technologies. Conference on Human Factors in Computing Systems - Proceedings (2020). DOI:https://doi.org/10.1145/3313831.3376397Google ScholarGoogle Scholar
  55. Katy E. Pearce, Jessica Vitak, and Kristen Barta. 2018. Privacy at the Margins| Socially Mediated Visibility: Friendship and Dissent in Authoritarian Azerbaijan. International Journal of Communication 12, 0 (March 2018), 22. Retrieved September 7, 2021 from https://ijoc.org/index.php/ijoc/article/view/7039Google ScholarGoogle Scholar
  56. Anthony T. Pinter, Pamela J. Wisniewski, Heng Xu, Mary Beth Rosson, and Jack M. Caroll. 2017. Adolescent Online Safety: Moving Beyond Formative Evaluations to Designing Solutions for the Future. In Proceedings of the 2017 Conference on Interaction Design and Children (IDC ’17), Association for Computing Machinery, New York, NY, USA, 352–357. DOI:https://doi.org/10.1145/3078072.3079722Google ScholarGoogle Scholar
  57. Yuxia Qian and Yuping Mao. 2021. Coping with cultural differences in healthcare: Chinese immigrant mothers’ health information sharing via WeChat. International Journal of Intercultural Relations 84, (September 2021), 315–324. DOI:https://doi.org/10.1016/j.ijintrel.2021.05.001Google ScholarGoogle ScholarCross RefCross Ref
  58. Betsy Rolland and Jordan Eschler. 2018. Searching for Survivor-Specific Services at NCI-Designated Comprehensive Cancer Centers: A Qualitative Assessment. JNCCN Journal of the National Comprehensive Cancer Network 16, 7 (July 2018), 839–844. DOI:https://doi.org/10.6004/jnccn.2018.7019Google ScholarGoogle Scholar
  59. C. Salazar. 2001. Building boundaries and negotiating work at home. Proceedings of the International ACM SIGGROUP Conference on Supporting Group Work (2001), 162–170. DOI:https://doi.org/10.1145/500307.500311Google ScholarGoogle ScholarDigital LibraryDigital Library
  60. Johnny Saldaña. 2013. The Coding Manual for Qualitative Researchers (2nd ed.). SAGE. Retrieved from www.sagepublications.comGoogle ScholarGoogle Scholar
  61. Martina Schuß and Tom Gross. 2019. Availability and boundary management: An exploratory study. Conference on Human Factors in Computing Systems - Proceedings (May 2019). DOI:https://doi.org/10.1145/3290607.3313088Google ScholarGoogle Scholar
  62. Martina Schuss and Tom Gross. 2019. Boundary management: Between clear separation and ad-hoc decisions. PervasiveHealth: Pervasive Computing Technologies for Healthcare (September 2019), 547–551. DOI:https://doi.org/10.1145/3340764.3344456Google ScholarGoogle Scholar
  63. Bryan C. Semaan, Lauren M. Britton, and Bryan Dosono. 2016. Transition Resilience with ICTs: “Identity Awareness” in Veteran Re-Integration. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI ’16), Association for Computing Machinery, New York, NY, USA, 2882–2894. DOI:https://doi.org/10.1145/2858036.2858109Google ScholarGoogle ScholarDigital LibraryDigital Library
  64. Woosuk Seo, Andrew B L Berry, Kaiser Permanente Washington, and Prachi Bhagane. 2019. Balancing Tensions between Caregiving and Parenting Responsibilities in Pediatric Patient Care. Proceedings of the ACM on Human-Computer Interaction 3, CSCW (November 2019), 1–24. DOI:https://doi.org/10.1145/3359255Google ScholarGoogle ScholarDigital LibraryDigital Library
  65. Woosuk Seo, Ayse G. Buyuktur, Sung Won Choi, Laura Sedig, and Sun Young Park. 2021. Challenges in the Parent-Child Communication of Health-related Information in Pediatric Cancer Care. Proc. ACM Hum.-Comput. Interact. 5, CSCW1 (April 2021), 110:1-110:24. DOI:https://doi.org/10.1145/3449184Google ScholarGoogle ScholarDigital LibraryDigital Library
  66. Charles L. Shapiro. 2018. Cancer Survivorship. New England Journal of Medicine 379, 25 (December 2018), 2438–2450. DOI:https://doi.org/10.1056/NEJMra1712502Google ScholarGoogle ScholarCross RefCross Ref
  67. Kazi Sinthia Kabir, Erin L Van Blarigan, June M Chan, Stacey A Kenfield, Jason Wiese, and Stacey A Ken-field. 2019. “I'm Done with Cancer. What am I Trying to Improve?”: Understanding the Perspective of Prostate Cancer Patients to Support Multiple Health Behavior Change ACM Reference Format. In Proceedings of the 13th EAI International Conference on Pervasive Computing Technologies for Healthcare, ACM, New York, NY, USA. Retrieved from https://doi.org/10.1145/3329189.3329207Google ScholarGoogle ScholarDigital LibraryDigital Library
  68. Meredith M. Skeels, Kenton T. Unruh, Christopher Powell, and Wanda Pratt. 2010. Catalyzing Social Support for Breast Cancer Patients. Proc SIGCHI Conf Hum Factor Comput Syst 2010, (April 2010), 173–182. DOI:https://doi.org/10.1145/1753326.1753353Google ScholarGoogle ScholarDigital LibraryDigital Library
  69. Ashley Wilder Smith, Keith M. Bellizzi, Theresa H.M. Keegan, Brad Zebrack, Vivien W. Chen, Anne Victoria Neale, Ann S. Hamilton, Margarett Shnorhavorian, and Charles F. Lynch. 2013. Health-Related Quality of Life of Adolescent and Young Adult Patients With Cancer in the United States: The Adolescent and Young Adult Health Outcomes and Patient Experience Study. J Clin Oncol 31, 17 (June 2013), 2136–2145. DOI:https://doi.org/10.1200/JCO.2012.47.3173Google ScholarGoogle Scholar
  70. Ashley Wilder Smith, Nita L. Seibel, Denise R. Lewis, Karen H. Albritton, Donald F. Blair, Charles D. Blanke, W. Archie Bleyer, David R. Freyer, Ann M. Geiger, Brandon Hayes-Lattin, James V. Tricoli, Lynne I. Wagner, and Bradley J. Zebrack. 2016. Next steps for adolescent and young adult oncology workshop: An update on progress and recommendations for the future. Cancer 122, 7 (2016), 988–999. DOI:https://doi.org/10.1002/cncr.29870Google ScholarGoogle ScholarCross RefCross Ref
  71. Susan Sontag. 1977. Illness as metaphor. Farrar, Straus and Giroux.Google ScholarGoogle Scholar
  72. Iben Sandal Stjerne and Silviya Svejenova. 2016. Connecting Temporary and Permanent Organizing: Tensions and Boundary Work in Sequential Film Projects. Organization Studies 37, 12 (2016), 1771–1792. DOI:https://doi.org/10.1177/0170840616655492Google ScholarGoogle ScholarCross RefCross Ref
  73. Jina Suh, Spencer Williams, Jesse R Fann, James Fogarty, Amy M Bauer, and Gary Hsieh. 2020. Parallel Journeys of Patients with Cancer and Depression: Challenges and Opportunities for Technology-Enabled Collaborative Care. Proc. ACM Hum.-Comput. Interact 4, CSCW1 (2020), 38. DOI:https://doi.org/10.1145/3392843Google ScholarGoogle ScholarDigital LibraryDigital Library
  74. Ludwig Thormann and Tom Gross. 2019. Boundary management between factual constraints and emotional ties. PervasiveHealth: Pervasive Computing Technologies for Healthcare (September 2019), 553–557. DOI:https://doi.org/10.1145/3340764.3344457Google ScholarGoogle Scholar
  75. Filiberto Toledano-Toledano and Miriam Teresa Domínguez-Guedea. 2019. Psychosocial factors related with caregiver burden among families of children with chronic conditions. BioPsychoSocial Med 13, 1 (March 2019), 6. DOI:https://doi.org/10.1186/s13030-019-0147-2Google ScholarGoogle ScholarCross RefCross Ref
  76. Penny Trieu and Nancy K. Baym. 2020. Private Responses for Public Sharing: Understanding Self-Presentation and Relational Maintenance via Stories in Social Media. Conference on Human Factors in Computing Systems - Proceedings (April 2020). DOI:https://doi.org/10.1145/3313831.3376549Google ScholarGoogle Scholar
  77. Tiffany C. Veinot, Jessica S. Ancker, Heather Cole-Lewis, Elizabeth D. Mynatt, Andrea G. Parker, Katie A. Siek, and Lena Mamykina. 2019. Leveling Up: On the Potential of Upstream Health Informatics Interventions to Enhance Health Equity. Medical Care 57, (June 2019), S108–S114. DOI:https://doi.org/10.1097/MLR.0000000000001032Google ScholarGoogle Scholar
  78. World Health Organization. 2020. Community engagement: a health promotion guide for universal health coverage in the hands of the people. World Health Organization, Geneva. Retrieved January 10, 2022 from https://apps.who.int/iris/handle/10665/334379Google ScholarGoogle Scholar
  79. Diyi Yang, Zheng Yao, Joseph Seering, and Robert Kraut. 2019. The channel maters: Self-disclosure, reciprocity and social support in online cancer support groups. Conference on Human Factors in Computing Systems - Proceedings (2019), 12. DOI:https://doi.org/10.1145/3290605.3300261Google ScholarGoogle ScholarDigital LibraryDigital Library
  80. Jaehee Yi and Brad Zebrack. 2010. Self-portraits of families with young adult cancer survivors: Using photovoice. Journal of Psychosocial Oncology 28, 3 (May 2010), 219–243. DOI:https://doi.org/10.1080/07347331003678329Google ScholarGoogle ScholarCross RefCross Ref
  81. Tal Z Zarsky. Incompatible: The GDPR in the Age of Big Data. SETON HALL LAW REVIEW 47, 26.Google ScholarGoogle Scholar
  82. US Childhood Cancer Statistics. ACCO. Retrieved January 6, 2022 from https://www.acco.org/us-childhood-cancer-statistics/Google ScholarGoogle Scholar
  83. Constitution of the World Health Organization. Retrieved January 10, 2022 from https://www.who.int/about/governance/constitutionGoogle ScholarGoogle Scholar
  84. Health Insurance Portability and Accountability Act. Retrieved September 9, 2021 from https://www.govinfo.gov/content/pkg/PLAW-104publ191/pdf/PLAW-104publ191.pdfGoogle ScholarGoogle Scholar
  85. Miracles for Kids. Miracles for Kids. Retrieved September 7, 2021 from https://miraclesforkids.org/Google ScholarGoogle Scholar
  86. St. Baldrick's Foundation. St. Baldrick's Foundation. Retrieved September 7, 2021 from https://www.stbaldricks.org/Google ScholarGoogle Scholar
  87. Make-A-Wish America. Make-A-Wish America. Retrieved September 7, 2021 from https://wish.org/homeGoogle ScholarGoogle Scholar

Index Terms

(auto-classified)
  1. When Worlds Collide: Boundary Management of Adolescent and Young Adult Childhood Cancer Survivors and Caregivers

        Recommendations

        Comments

        Login options

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

        Sign in

        Full Access

        Get this Publication

        • Article Metrics

          • Downloads (Last 12 months)349
          • Downloads (Last 6 weeks)50

          Other Metrics

          View Author Metrics

        PDF Format

        View or Download as a PDF file.

        PDF

        eReader

        View online with eReader.

        eReader

        HTML Format

        View this article in HTML Format .

        View HTML Format
        View Table of Contents
        About Cookies On This Site

        We use cookies to ensure that we give you the best experience on our website.

        Learn more

        Got it!