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Both a life saver and totally shameful”: young adult cancer survivors’ perceptions of medical crowdfunding

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.

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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.

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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

Authors

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

Correspondence to Lauren V. Ghazal.

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.

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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 (2022). https://doi.org/10.1007/s11764-022-01188-x

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Keywords

  • Cancer survivors
  • Crowdfunding
  • Cost of illness
  • Financial burden
  • Health disparities
  • Young adult