Abstract
Purpose
Young adults (YAs) diagnosed with cancer face high financial burden at a time in their lives when they are financially vulnerable. Some turn to medical crowdfunding, that is, using social media and other means to raise funds or resources to offset medical and usual life expenses. Major research gaps exist regarding the experiences of those who pursued crowdfunding. Thus, the study purpose was to describe the perceptions of, and experiences with, medical crowdfunding among a sample of YA cancer survivors.
Methods
In February 2021, we distributed an online survey to YAs with a history of a cancer diagnosis, who had received grants from an organization that offers financial assistance. We calculated descriptive statistics on the crowdfunding sample and employed thematic analysis to analyze the open-ended questions.
Results
In this sample (N = 113), 46 YA cancer survivors had engaged in medical crowdfunding and shared their perceptions and experiences. Our central theme, “The Crowdfunding Compromise” captures the trade-offs participants faced, which included subthemes of “crowdfunding as useful/helpful,” “factors associated with crowdfunding success,” and “questioning the why?”.
Conclusions
Among YA cancer survivors, medical crowdfunding brings shame and stigma in addition to financial support. YA cancer survivors demonstrate resilience in their attempts to find individual solutions to financial problems created by unchecked health care costs, the US health insurance infrastructure, and lack of legislation.
Implications for Cancer Survivors
This study fills an important gap in understanding individual-level crowdfunding experiences. Implications include system-level approaches to addressing cancer-related financial burden and potential worsening of existing disparities through medical crowdfunding.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
Data availability
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
References
Miller KD, Fidler-Benaoudia M, Keegan TH, Hipp HS, Jemal A, Siegel RL. Cancer statistics for adolescents and young adults, 2020. CA Cancer J Clin. 2020;70(6):443–59.
Centers for Disease Control and Prevention (CDC). Health and economic costs of chronic diseases [Internet]. National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). 2021 [cited 2021 Jul 1]. Available from: https://www.cdc.gov/chronicdisease/about/costs/index.htm
Kaul S, Kirchhoff AC. Closing the financial toxicity gap for adolescents and young adults with cancer. Pediatr Blood Cancer. 2019;66(7):e27742.
Hammond C. Against a singular message of distinctness: challenging dominant representations of adolescents and young adults in oncology. J Adolesc Young Adult Oncol. 2016;6(1):45–9.
Levin NJ, Zebrack B, Cole SW. Psychosocial issues for adolescent and young adult cancer patients in a global context: a forward-looking approach. Pediatr Blood Cancer. 2019;66(8):e27789.
Kaddas HK, Pannier ST, Mann K, Waters AR, Salmon S, Tsukamoto T, Warner EL, Fowler B, Lewis MA, Fair DB, Kirchhoff AC. Age-related differences in financial toxicity and unmet resource needs among adolescent and young adult cancer patients. J Adolesc Young Adult Oncol. 2020;9(1):105–10.
Ghazal LV, Gormley M, Merriman JD, Santacroce SJ. Financial toxicity in adolescents and young adults with cancer: a concept analysis. Cancer Nurs. 2021;44(6):E636–51.
Ghazal LV, Merriman J, Santacroce SJ, Dickson VV. Survivors’ dilemma: young adult cancer survivors’ perspectives of work-related goals. Workplace Health Saf. 2021;69(11):506–16.
Perales M-A, Drake EK, Pemmaraju N, Wood WA. Social media and the adolescent and young adult (AYA) patient with cancer. Curr Hematol Malig Rep. 2016;11(6):449–55.
Chou WS, Moskowitz M. Social media use in adolescent and young adult (AYA) cancer survivors. Curr Opin Psychol. 2016;9:88–91.
Cohen AJ, Brody H, Patino G, Ndoye M, Liaw A, Butler C, Breyer BN. Use of an online crowdfunding platform for unmet financial obligations in cancer care. JAMA Intern Med. 2019;179(12):1717–20.
National Opinion Research Center (NORC) at the University of Chicago. Millions of Americans donate through crowdfunding sites to help others pay for medical bills [Internet]. National Opinion Research Center at the University of Chicago. 2020 [cited 2021 Jul 1]. Available from: https://www.norc.org/NewsEventsPublications/PressReleases/Pages/millions-of-americans-donate-through-crowdfunding-sites-to-help-others-pay-for-medical-bills.aspx
GoFundMe [Internet]. 2021. Available from: https://www.gofundme.com/
Cerullo M. Their twins’ medical costs total $750,000 — each. They and thousands of others are counting on GoFundMe [Internet]. Money Watch. CBS News; 2019. Available from: https://www.cbsnews.com/news/crushed-by-medical-bills-many-americans-go-online-to-beg-for-help/?ftag=CNM-00-10aag7e
Pisu M, Henrikson NB, Banegas MP, Yabroff KR. Costs of cancer along the care continuum: what we can expect based on recent literature. Cancer. 2018;124(21):4181–91.
Kenworthy NJ. Crowdfunding and global health disparities: an exploratory conceptual and empirical analysis. Glob Health. 2019;15(1):71.
Lee S, Lehdonvirta V. New digital safety net or just more ‘friendfunding’? Institutional analysis of medical crowdfunding in the United States. Inf Commun Soc. 2020. https://doi.org/10.1080/1369118X.2020.1850838.
Snyder J, Chow-White P, Crooks VA, Mathers A. Widening the gap: additional concerns with crowdfunding in health care. Lancet Oncol. 2017;18(5):e240.
Burtch G, Chan J. Investigating the Relationship Between Medical Crowdfunding and personal bankruptcy in the United States: evidence of a digital divide [Internet]. Rochester, NY: Social Science Research Network; 2018 Jul [cited 2021 Aug 25]. Report No.: ID 2676821. Available from: https://papers.ssrn.com/abstract=2676821
Silver ER, Truong HQ, Ostvar S, Hur C, Tatonetti NP. Association of Neighborhood Deprivation Index with success in cancer care crowdfunding. JAMA Netw Open. 2020;3(12):e2026946.
Berliner LS, Kenworthy NJ. Producing a worthy illness: personal crowdfunding amidst financial crisis. Soc Sci Med. 2017;187:233–42.
Thomas HS, Lee AW, Nabavizadeh B, Namiri NK, Hakam N, Martin-Tuite P, Rios N, Enriquez A, Mmonu NA, Cohen AJ, Breyer BN. Characterizing online crowdfunding campaigns for patients with kidney cancer. Cancer Med. 2021;10(13):4564–74.
Gu T, Huang X, Wu J. What motivates people to donate in medical charitable crowdfunding projects? A trust theory perspective. WHICEB 2020 Proc [Internet]. 2020 Jul 5; Available from: https://aisel.aisnet.org/whiceb2020/67
Fritz N, Gonzales A. Privacy at the margins| not the normal trans story: negotiating trans narratives while crowdfunding at the margins. Int J Commun. 2018;12:20.
Gonzales AL, Kwon EY, Lynch T, Fritz N. “Better everyone should know our business than we lose our house”: Costs and benefits of medical crowdfunding for support, privacy, and identity. New Media Soc. 2018;20(2):641–58.
The Samfund. Expect Miracles Foundation and The Samfund [Internet]. 2021. Available from: http://www.thesamfund.org/
Baillou J. Open-ended questions. In:. Lavrakas PJ, editor. Encyclopedia of survey research methods. Thousand Oaks: SAGE; 2008. pp. 548–550.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
Barnes SB. A privacy paradox: social networking in the United States. First Monday [Internet]. 2006 Sep 4 [cited 2021 Aug 31]; Available from: https://firstmonday.org/ojs/index.php/fm/article/view/1394
Acknowledgements
We thank all the young adult cancer survivors who shared their crowdfunding experiences in this study.
Funding
Dr. Ghazal receives research support from the NIH/NCI grant #T32-CA236621: Interdisciplinary Research Training Center in Cancer Care Delivery. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or the National Cancer Institute.
Author information
Authors and Affiliations
Contributions
Concept and design: LVG, SEW, and BG. Acquisition, analysis or interpretation of data: LVG, SEW, and BG. Drafting of the manuscript: LVG. Critical revision of the manuscript for important intellectual content: LVG, SEW, BG, and SJS. Statistical analysis: LVG, SEW, BG, and SJS. Supervision: LVG and SJS.
Corresponding author
Ethics declarations
Ethics approval
The local Institutional Review Board was deemed exempt from ongoing oversight; the study involved no direct contact with participants, and survey responses were not linked to potential personal identifier.
Consent to participate
Participants provided electronic consent for their participation and did not receive any financial incentive for completing the survey.
Consent for publication
Not applicable; confidentiality is assured for all participants regarding any personal responses and information provided, as all data collected were anonymized.
Conflict of interest
All authors do not have any conflicts to disclose.
Additional information
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Supplementary Information
Below is the link to the electronic supplementary material.
Rights and permissions
About this article
Cite this article
Ghazal, L.V., Watson, S.E., Gentry, B. et al. “Both a life saver and totally shameful”: young adult cancer survivors’ perceptions of medical crowdfunding. J Cancer Surviv 17, 332–341 (2023). https://doi.org/10.1007/s11764-022-01188-x
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11764-022-01188-x