Research Article
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Published Online: 14 October 2022

A Thin Line Between Helpful and Harmful Internet Usage: Embodied Research on Internet Experiences Among Adolescent and Young Adult Cancer Patients

Publication: Journal of Adolescent and Young Adult Oncology
Volume 11, Issue Number 5

Abstract

Purpose: The purpose of this study was to expand upon findings from a prior Delphi study of adolescent and young adults' (AYAs') preferences for cancer resources. Utilizing an embodied approach, this study intended to elucidate a deeper and nuanced understanding of the expressed benefits and risks of engaging in cancer-related online interactions.
Methods: Using Gale et al.'s framework method for qualitative, multidisciplinary health research and Thanem and Knights's embodied research methods for the social sciences, an investigative team of embodied researchers (AYA cancer patients turned researchers) conducted semistructured in-depth interviews with AYA cancer patients (n = 10) diagnosed between ages 15 and 39 years. To generate themes, researchers identified commonalities and differences within the qualitative data, and indexed codes according to the agreed analytic framework. Furthermore, by fully engaging with personal reflexivity, bracketing, and analytic memos across data collection and analysis, the investigative team elucidated benefits and risks of embodied research.
Results: Findings impart evidence on AYAs' needs for internet-based content at the time of cancer diagnosis, use of the internet to fulfill cancer-related needs, perception of gaps in online cancer resources, and advice to other AYA cancer patients accessing internet-based information and support. Content analysis of interview data on participants' descriptions of personal engagement with the internet revealed beneficial themes of empowerment and harmful themes of fear-inducing consequences.
Conclusions: In our rapidly evolving context of postpandemic internet reliance, developers of online cancer content should prioritize and respond to the nuanced vulnerabilities of AYAs. Future research must include socioeconomically disadvantaged participants to better understand practical challenges and promote health equity.

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Disclaimer

A summary of results was presented as part of an oral panel session, “Studying the Lived Experience of Transitioning to Adulthood in the Context of Cancer: Embodied Research in Adolescent and Young Adult Oncology,” at the Society for Social Work and Research Annual Conference on January 20, 2021.

References

1. Immune Deficiency Foundation. Telehealth access expanded in response to coronavirus [Internet]. 2020. Accessed September 28, 2021 from: https://primaryimmune.org/news/telehealth-access-expanded-response-coronavirus
2. Keesara S, Jonas A, Schulman K. Covid-19 and health care's digital revolution. N Engl J Med. 2020;382(23):e82.
3. Making emergency supplemental appropriations for the fiscal year ending September 30, 2020, and for other purposes [Internet]. H. R. 6074 2020. Accessed September 28, 2021 from: https://www.congress.gov/116/bills/hr6074/BILLS-116hr6074enr.pdf
4. U.S. Department of Health & Human Services. Notification of enforcement discretion for telehealth remote communications during the COVID-19 nationwide public health emergency [Internet]. 2021. Accessed September 28, 2021 from: https://www.hhs.gov/hipaa/for-professionals/special-topics/emergency-preparedness/notification-enforcement-discretion-telehealth/index.html
5. Jin MX, Kim SY, Miller LJ, et al. Telemedicine: current impact on the future. Cureus. 2020. Accessed September 28, 2021 from: https://www.cureus.com/articles/36583-telemedicine-current-impact-on-the-future
6. Maroongroge S, Smith B, Bloom ES, et al. Telemedicine for radiation oncology in a post-COVID world. Int J Radiat Oncol. 2020;108(2):407–10.
7. Barney A, Buckelew S, Mesheriakova V, Raymond-Flesch M. The COVID-19 pandemic and rapid implementation of adolescent and young adult telemedicine: challenges and opportunities for innovation. J Adolesc Health. 2020;67(2):164–71.
8. Baum A, Kaboli PJ, Schwartz MD. Reduced in-person and increased telehealth outpatient visits during the COVID-19 pandemic. Ann Intern Med. 2021;174(1):129–31.
9. Cinelli M, Quattrociocchi W, Galeazzi A, et al. The COVID-19 social media infodemic. Sci Rep. 2020;10(1):16598.
10. Zarocostas J. How to fight an infodemic. Lancet. 2020;395(10225):676.
11. Johnson SB, Parsons M, Dorff T, et al. Cancer misinformation and harmful information on Facebook and other social media: a brief report. JNCI J Natl Cancer Inst. 2021. [Epub ahead of print];djab141.
12. Prensky M. Digital natives, digital immigrants part 2: do they really think differently? Horiz. 2001;9(6):1–6.
13. Lazard AJ, Collins MKR, Hedrick A, et al. Using social media for peer-to-peer cancer support: interviews with young adults with cancer. JMIR Cancer. 2021;7(3):e28234.
14. Donovan E, Martin SR, Seidman LC, et al. The role of social media in providing support from friends for adolescent and young adult (AYA) patients and survivors of sarcoma: perspectives of AYA, parents, and providers. J Adolesc Young Adult Oncol. 2021;27:100316.
15. National Cancer Institute. Division of Cancer Control & Population Sciences, National Institutes of Health [Internet]. 2019. Accessed July 21, 2021 from: https://cancercontrol.cancer.gov/about-dccps/about-cc/cancer-control-continuum
16. Chang K, Berthelet E, Grubbs E, et al. Websites, websites everywhere: how thyroid cancer patients use the internet. J Cancer Educ. 2020;35(6):1177–83.
17. Holmes MM. Why people living with and beyond cancer use the internet. Integr Cancer Ther. 2019;18:153473541982983.
18. De Clercq E, Rost M, Gumy-Pause F, et al. Moving beyond the friend-foe myth: a scoping review of the use of social media in adolescent and young adult oncology. J Adolesc Young Adult Oncol. 2020;9(5):561–71.
19. Lea S, Martins A, Bassett M, et al. Issues experienced and support provided to adolescents and young adults at the end of active treatment for cancer: a rapid review of the literature. Eur J Cancer Care (Engl). 2018;27(6):e12972.
20. Moody L, Turner A, Osmond J, et al. Web-based self-management for young cancer survivors: consideration of user requirements and barriers to implementation. J Cancer Surviv. 2015;9(2):188–200.
21. Falzone AE, Brindis CD, Chren M-M, et al. Teens, tweets, and tanning beds: rethinking the use of social media for skin cancer prevention. Am J Prev Med. 2017;53(3):S86–94.
22. Mendoza JA, Baker KS, Moreno MA, et al. A Fitbit and Facebook mHealth intervention for promoting physical activity among adolescent and young adult childhood cancer survivors: a pilot study. Pediatr Blood Cancer. 2017;64(12):e26660.
23. Pohlig F, Lenze U, Muhlhofer HML, et al. IT-based psychosocial distress screening in patients with sarcoma and parental caregivers via disease-specific online social media communities. In Vivo. 2017;31(3):443–50.
24. Valle CG, Tate DF. Engagement of young adult cancer survivors within a Facebook-based physical activity intervention. Transl Behav Med. 2017;7(4):667–79.
25. Ping Q, Yang CC, Marshall SA, et al. Breast cancer symptom clusters derived from social media and research study data using improved K-Medoid clustering. IEEE Trans Comput Soc Syst. 2016;3(2):63–74.
26. Hale BJ, Gonzales AL, Richardson M. Vlogging cancer: predictors of social support in YouTube cancer vlogs. Cyberpsychology Behav Soc Netw. 2018;21(9):575–81.
27. Cheung CK, Zebrack B. What do adolescents and young adults want from cancer resources? insights from a Delphi panel of AYA patients. Support Care Cancer. 2017;25(1):119–26.
28. Donovan E, Martin SR, Seidman LC, et al. A mobile-based mindfulness and social support program for adolescents and young adults with sarcoma: development and pilot testing. JMIR MHealth UHealth. 2019;7(3):e10921.
29. Lathren C, Bluth K, Campo R, et al. Young adult cancer survivors' experiences with a mindful self-compassion (MSC) video-chat intervention: a qualitative analysis. Self Identity. 2018;17(6):646–65.
30. Sansom-Daly UM, Wakefield CE, Bryant RA, et al. The recapture life working party. Feasibility, acceptability, and safety of the Recapture Life videoconferencing intervention for adolescent and young adult cancer survivors. Psychooncology. 2019;28(2):284–92.
31. Chalmers JA, Sansom-Daly UM, Patterson P, et al. Psychosocial assessment using telehealth in adolescents and young adults with cancer: a Partially randomized patient preference pilot study. JMIR Res Protoc. 2018;7(8):e168.
32. Grace JG, Schweers L, Anazodo A, Freyer DR. Evaluating and providing quality health information for adolescents and young adults with cancer. Pediatr Blood Cancer [Internet]. 2019. Accessed September 28, 2021 from: https://onlinelibrary.wiley.com/doi/10.1002/pbc.27931
33. Moscato EL, Miley AE, LeBlond EI, et al. Feasibility and acceptability of an online problem-solving therapy intervention for adolescent and young adult brain tumor survivors. Clin Pract Pediatr Psychol. 2019;7(1):68–78.
34. Price J, Brunet J. Telehealth coaching for rural-living young adult cancer survivors: a protocol. Health Educ J. 2020;79(2):212–24.
35. Viola A, Panigrahi G, Devine KA. Digital interventions for adolescent and young adult cancer survivors. Curr Opin Support Palliat Care. 2020;14(1):51–9.
36. Aggarwal R, Hueniken K, Eng L, et al. Health-related social media use and preferences of adolescent and young adult cancer patients for virtual programming. Support Care Cancer. 2020;28(10):4789–801.
37. Cho H, Silver N, Na K, et al. Visual cancer communication on social media: an examination of content and effects of #Melanomasucks. J Med Internet Res. 2018;20(9):e10501.
38. Wang X, Shi J, Kong H. Online health information seeking: a review and meta-analysis. Health Commun. 2021;36(10):1163–75.
39. Davies JP, McGill BC, Sansom-Daly UM, et al. “This is the first time i've talked about this”: considerations when conducting qualitative research interviews with adolescents and young adults with cancer. J Adolesc Young Adult Oncol. 2020;10(5):540–548.
40. Chadwick R. Embodied methodologies: challenges, reflections and strategies. Qual Res. 2017;17(1):54–74.
41. Spatz B. Embodied research: a methodology. Liminalities. 2017;13(2):1–31.
42. Thanem T, Knights D. Embodied research methods. London: SAGE Publications, Ltd.; 2019.
43. Cheung CK. Young cancer patients as future leaders in the global knowledge economy. Cancer Ther Oncol Int J. 2018;10(4):68–71.
44. Gale NK, Heath G, Cameron E, et al. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013;13(1):117.
45. Eng L, Bender J, Hueniken K, et al. Age differences in patterns and confidence of using internet and social media for cancer-care among cancer survivors. J Geriatr Oncol. 2020;11(6):1011–9.
46. Daniels SR, Yang C-C, Toohey SJ, Willard VW. Perspectives on social media from adolescents and young adults with cancer. J Pediatr Oncol Nurs. 2021;38(4):225–32.

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Published In

cover image Journal of Adolescent and Young Adult Oncology
Journal of Adolescent and Young Adult Oncology
Volume 11Issue Number 5October 2022
Pages: 478 - 485
PubMed: 34882036

History

Published online: 14 October 2022
Published in print: October 2022
Published ahead of print: 8 December 2021

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Affiliations

University of Maryland School of Social Work, Baltimore, Maryland, USA.
Monica G. Norlander
Northwestern Medicine, Organ Transplant Center, Chicago, Illinois, USA.
Adriana N. Vest
University of South Florida, Morsani College of Medicine, Tampa, Florida, USA.
Bria N. Thomas
Loyola University Maryland, Department of Biology and Department of Psychology, Baltimore, Maryland, USA.
Bradley J. Zebrack
University of Michigan School of Social Work, Ann Arbor, Michigan, USA.

Notes

Address correspondence to: Christabel K. Cheung, PhD, MSW, University of Maryland, School of Social Work, 525 West Redwood St., Baltimore, MD 21201, USA [email protected]

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This project was funded by Teen Cancer America.

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