Journal of the National Medical Association
Volume 111, Issue 3, 2019, Pages 234-245

“They were just waiting to die”: Somali Bantu and Karen Experiences with Cancer Screening Pre- and Post-Resettlement in Buffalo, NY (Article)

Schuster R.C.* , Rodriguez E.M. , Blosser M. , Mongo A. , Delvecchio-Hitchcock N. , Kahn L. , Tumiel-Berhalter L.
  • a Center for Global Health, Arizona State University, PO Box 872402, Tempe, AZ 85287-2402, United States
  • b Office of Community Outreach and Engagement, Cancer Prevention and Control, Roswell Park Comprehensive Cancer Center, Elm & Carlton Streets, Buffalo, NY 14263, United States
  • c Jericho Road Community Health Center, 184 Barton Street BuffaloNY 14213, United States
  • d Jericho Road Community Health Center, 184 Barton Street BuffaloNY 14213, United States
  • e City of Light Consulting, Buffalo, NY, United States
  • f Primary Care Research Institute, Department of Family Medicine, Jacobs School of Medicine & Biomedical Sciences, University at Buffalo, 77 Goodell Street, Suite 220D, Buffalo, NY 14203, United States
  • g Department of Family Medicine, Jacobs School of Medicine & Biomedical Sciences, University of Buffalo, 77 Goodell Street, Suite 220D, Buffalo, NY 14203, United States

Abstract

Background: Little is known about how pre-resettlement experiences affect refugees’ uptake of cancer screenings. The objective of this study was to characterize Somali Bantu and Karen experiences with cancer and cancer screenings prior to and subsequent to resettlement in Buffalo, NY in order to inform engagement by health providers. Methods: The study was grounded in a community-based participatory research approach, with data collection and analysis guided by the Health Belief Model and life course framework. Interviews were transcribed, independently coded by two researchers, and analyzed using an immersion-crystallization approach. We conducted 15 semi-structured interviews and six interview-focus group hybrids with Somali Bantu (n = 15) and Karen (n = 15) individuals who were predominantly female (87%). Results: Cancer awareness was more prevalent among Karen compared to Somali Bantu participants. Prior to resettlement, preventative health care, including cancer screening, and treatment were unavailable or inaccessible to participants and a low priority compared with survival and acute health threats. There, Somali Bantu treated cancer-like diseases with traditional medicine (heated objects, poultices), and Karen reported traditional medicine and even late-stage biomedical treatments were ineffective due to extent of progressed, late-stage ulcerated tumors when care was sought. A fatalistic view of cancer was intertwined with faith (Somali Bantu) and associated with untreated, late-stage cancer (Karen). Karen but not Somali Bantu reported individuals living with cancer were stigmatized pre-resettlement due to the unpleasant manifestations of untreated, ulcerated tumors. Now resettled in the U.S., participants reported obtaining cancer screenings was challenged by transportation and communication barriers and facilitated by having insurance and interpretation services. While Somali Bantu women strongly preferred a female provider for screenings, Karen women felt cancer severity outweighed cultural modesty concerns in terms of provider gender. Significance: Our findings suggest the need for culturally-relevant cancer education that incorporates the life course experiences and addresses logistical barriers in linking individuals with screening, to be complemented by trauma-informed care approaches by healthcare providers. © 2018 National Medical Association

Author Keywords

Stigma Cancer prevention Life course perspective trauma-informed care Refugee

Index Keywords

personal experience patient care health care management communication barrier refugee health insurance clinical feature human patient transport cancer survival health service priority journal comparative study cancer prevention cancer staging cancer screening interview disease course treatment indication conceptual framework traditional medicine case report semi structured interview female clinical article medical information prevalence life history Health Belief Model Article health care awareness adult health education participatory research health care system life threat immersion malignant neoplasm

Link
https://www.scopus.com/inward/record.uri?eid=2-s2.0-85056274204&doi=10.1016%2fj.jnma.2018.10.006&partnerID=40&md5=07ca5a04ed267aaf381d0bbae06400b1

DOI: 10.1016/j.jnma.2018.10.006
ISSN: 00279684
Original Language: English