Learnings from Racialized Adolescents and Young Adults with Lived Experiences of Cancer: "It's Okay to Critique the System That Claims to Save Us"

Curr Oncol. 2024 Feb 16;31(2):1091-1101. doi: 10.3390/curroncol31020081.

Abstract

Interest in AYA cancer care has increased globally over the recent past; however, most of this work disproportionately represents white, heterosexual, middle-income, educated, and able-bodied people. There is recognition in the literature that cancer care systems are not structured nor designed to adequately serve people of colour or other equity-denied groups, and the structural racism in the system prevents prevention, treatment, and delivery of care. This work seeks to examine structural racism and the ways that it permeates into the lived experiences of AYAs in their cancer care. This article represents the first phase of an 18-month, patient-oriented, Participatory Action Research project focused on cancer care for racialized AYAs that is situated within a broader program of research focused on transforming cancer care for AYAs. Semi-structured interviews were completed with 18 AYAs who self-identify as racialized, have lived experiences with cancer, and have received treatment in Canada. Following participant review of their transcripts, the transcripts were de-identified, and then coded by three separate authors. Five main themes were identified using thematic analysis, including the need to feel supported through experiences with (in)fertility, be heard and not dismissed, advocate for self and have others advocate for you, be in community, and resist compliance.

Keywords: adolescents and young adults; racialized; system change; systemic and structural racism.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Canada
  • Humans
  • Neoplasms* / therapy
  • Young Adult

Grants and funding

This project was funded by Canadian Institutes of Health Research (CIHR Grant: 202203PDI-483477-PH1-ROYL-68945) and Michael Smith Health Research BC, and informed work funded by the New Frontiers in Research Fund and Vancouver Foundation.