BIPOC experiences of (anti-)racist patient engagement in adolescent and young adult oncology research: an electronic Delphi study

Author:

Cheung Christabel K1ORCID,Miller Kimberly A2ORCID,Goings Trenette Clark3ORCID,Thomas Bria N4ORCID,Lee Haelim1ORCID,Brandon Rachel E5ORCID,Katerere-Virima Thuli1ORCID,Helbling Laura E1ORCID,Causadias José M6ORCID,Roth Michael E7ORCID,Berthaud Frantz M8ORCID,Jones Laundette P9ORCID,Ross Valentina A1ORCID,Betz Gail D10ORCID,Simmons Cole D11ORCID,Carter Jay1,Davies Simon J12ORCID,Gilman Megan L13,Lewis Mark A14,Lopes Gilberto15ORCID,Tucker-Seeley Reginald D16ORCID

Affiliation:

1. University of Maryland School of Social Work, Baltimore, MD 21201, USA

2. Department of Preventive Medicine and Dermatology, Keck School of Medicine, University of Southern California, Los Angeles, CA 90033, USA

3. School of Social Work, University of North Carolina, Chapel Hill, NC 27516, USA

4. Temple University School of Podiatric Medicine, Philadelphia, PA 19107, USA

5. University of Michigan School of Social Work, Ann Arbor, MI 48109, USA

6. T. Denny Sanford School of Social and Family Dynamics, Arizona State University, Tempe, AZ 85287, USA

7. Department of Pediatrics, University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA

8. The Hospitals of Providence, El Paso, TX 79938, USA

9. University of Maryland School of Medicine, Baltimore, MD 21201, USA

10. University of Maryland Baltimore Health Sciences & Human Services Library, Baltimore, MD 21201, USA

11. Bryn Mawr Graduate School of Social Work and Social Research, Bryn Mawr, PA 19010, USA

12. Teen Cancer America, Los Angeles, CA 90064, USA

13. AYA Psychiatry, Memorial Sloan Kettering Cancer Center, New York, NY 10065, USA

14. Department of Gastrointestinal Oncology, Intermountain Healthcare, Salt Lake City, UT, 84107 USA

15. Sylvester Comprehensive Cancer Center, Miller School of Medicine, University of Miami, Miami, FL 33136, USA

16. Health Equity Strategies and Solutions, Los Angeles, CA 90008, USA

Abstract

Aims: To characterize Black, Indigenous and People of Color (BIPOC) adolescent and young adult (AYA) cancer patients' experiences of patient engagement in AYA oncology and derive best practices that are co-developed by BIPOC AYAs and oncology professionals. Materials & methods: Following a previous call to action from AYA oncology professionals, a panel of experts composed exclusively of BIPOC AYA cancer patients (n = 32) participated in an electronic Delphi study. Results: Emergent themes described BIPOC AYA cancer patients' direct experiences and consensus opinion on recommendations to advance antiracist patient engagement from BIPOC AYA cancer patients and oncology professionals. Conclusion: The findings reveal high-priority practices across all phases of research and are instructional for advancing health equity.

Funder

University of Maryland School of Social Work

Memorial Sloan Kettering Cancer Center Support Grant/Core Grant

Publisher

Future Medicine Ltd

Subject

Cancer Research,Oncology,General Medicine

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