Barriers and Facilitators of Cervical Cancer Screening among Women of Hmong Origin

1. Barriers and Facilitators of Cervical Cancer Screening among Women of Hmong Origin Dian Baker PhD, APRN Associate Professor School of Nursing California State University Sacramento dibaker@csus.edu Dao Fang MSWHmong Women Heritage Association Photo from Split Horn: Life of a Hmong Shaman

2. Cancer Inequities • The Hmong are least likely group to receive screening or treatment for cervical cancer1-3 • Cervical cancer leading cancer death among women of Hmong origin • 36.6/ 100,000 3X times higher than aggregated A&PIA groups • Unnecessarily low survivor rates • SEER data from NCI – California Hmong cervical cx incidence rate ranks highest among all US racial/ ethic groups3

3. Hmong provided military support in Northern Laos for the US during the Vietnam-American war-the Hmong escaped into Diaspora as war refugees, the majority fleeing to the US • Original wave arrived in 1976 – continued over decades - Recent waves again in 2004 • Fastest growing minority group by percentage of all A&PIA • Demographics indicate Hmong among the poorest and least educated of all refugee groups • Historical practice of animism and shamanism ://www.ucdmc.ucdavis.edu/newsroom/images/rs/cancer_hmong_shaman.jpg

4. Previous Study in 2010 • Community based survey of 402 Hmong women in CA 4-5 • Only 74% pap smear last 3 years • Surprising findings • US-born, English fluent, insured women had lower rates of Pap testing (after control for age, martial status, etc) • 89% reported having full coverage health insurance

5. Methods • Exploratory study, collaborative, community-based participatory research (CBPR) approach • Hmong Women’s Heritage Association and • NCI’s Asian American Network for Cancer Awareness, Research and Training project (AANCART) • Four focus groups (n=44)/ each distinct demographics • (1) college-attending students, ages 20- 26, all U.S.-born and English speaking (n=8) • (2) professional, college-educated working women (n=17) • (3) traditional women who practice shamanism and do not work outside the home (n=11) • (4) non-traditional women who have adopted a Christian religion (and thus no longer practice shamanism) and do not work outside the home (n=8).

6. Methods • Questions developed by the CBPR partnership – included suggestions for increasing screening rates • Conducted by a trained bicultural/ certified interpreter – member CBPR partnership - English and/or Hmong as required • PI with translation headset and interpreter • Krippendorff’s guideline used for analysis6 • Analysis informed by Social Determinants of Health framework

7. Results • Themes: sociocultural barriers and community-level structural barriers • “stories from the community” – women often commented what they heard from other women as important sources of information

8. Knowledge – no one associated cervical cancer with HPV – unsure what happens during a screening visit Stigma, fear and embarrassment – talking about it will cause it, txaj muag - shy about your body and viewing by others Lack of time – intergenerational stress and demands Association with birth control – cultural undertone of avoiding birth control/ multiple stories of bad outcomes from using birth control including cancer Core Concepts Lack of Knowledge Stigma, Fear Embarrassment Lack of time Association with birth control

9. “…she had a yeast infection and she didn’t go get checked up at the hospital., instead she used some chemical that you would use to clean the oven, she used it to wash her…it deteriorated her skin and it spread and she died. Maybe it might have caused cancer” [traditional] • “I have a friend who had eight children and did not want any more kids, so she took some medicine which cause her to have cancer. She went to the doctor for them to peel it off her and get rid of the cancer, but after they did that, she passed away” [non-traditional]

10. “I think it’s [screening] is an embarrassment issue, for myself, I don’t know where to go and get a Pap test if I’m embarrass then I don’t want to ask or know who to ask” [college] • “The stigma we have about going to the doctors. I’ve learned from my mom that it is just culturally inappropriate to go check up or get that exam and show [yourself] to the doctor. You’re just embarrassed about it so that stop you from going to get those kind of exam done” [college] • “I agree, I’m just embarrassed so that is my biggest barriers as to why I don’t go get checkup” [traditional]

11. Linguistic barriers no interpreters available, and lack of translatable words – confusion Healthcare service delivery – long lines, no appointments, unfriendly staff “stories from the community” what happens during the visit Asked to provide own interpreter and bring their children for interpretation Positive comments: gender not too significant/ doctors are there to help you/ find one you like Core Concepts Linguistic barriers Healthcare service delivery: Interpretation Interaction during visits

12. [doctors are not careful about how they treat you]…”I agree, especially when I don’t understand English, the doctor treat me differently and I feel like they don’t have much respect for me and is rude because I don’t know the language…I feel like I had no rights because I didn’t know English” [non-traditional] • “The nurse asked me if I brought someone to interpret for me. I said that I didn’t because you guys didn’t tell me that I need to bring one, even if I know some English. She said to me in a rude tone that since I didn’t bring an interpreter I need to decide what to do now” [non-traditional]

13. “…there’s a lack of vocabulary. Our parents don’t know how to explain it because in our old country we don’t know what the right terms are. In the Western culture, there is a vocabulary for everything, but in our culture, one term can mean so many things …I heard of someone passing away with cancer, but I’m not sure if it is cervical cancer because the parents don’t know what the right terms are in Hmong.” [professional] • “What is the right terminology of cervical cancer in Hmong? How do you translate that in Hmong so we can all understand?” [professional]

14. Implications • Enhance HCP education – discuss fear and stigma8 • Policy – HCP need more time for bicultural visits and interpreted visits7 • More policy enforcement for required use of interpreters / more training, national certification/ use of cultural brokers9 • Outreach campaigns and social marketing – peer to peer education and support • “do this like you do breast cancer, why so much on breast cancer and nothing on Pap tests?” • Consider issues related to family planning

15. Key References • 1.Yang RC, Mills PK, Riordan DG. Cervical cancer among Hmong women in California, 1988 • to 2000. Am J Preventive Medicine. 2004;27(2):132-138. • 2.Mills PK, Yang RC, Riordan D. Cancer incidence in the Hmong in California, 1988- • 2000. Cancer. 2005;104(12S):2969-2974. • 3.Chen JY, Diamant AL, Kagawa-Singer M, Pourat N, Wold C. Disaggregating data on Asian • and Pacific Islander women to assess cancer screening. American Journal of Preventive • Medicine. 2004;27(2):139-145. • 4.Fang DM, Lee S, Stewart S, Ly MY, Chen MS. Factors associated with pap testing among Hmong women. J Health care Poor Underserved. 2010:21(3):839-840. DOI:10.1353/hpu.0.0338 • 5. Lo P, Fang DM, Ly MY. Access to adequate healthcare for Hmong women: A patient navigation program to increase pap screening. Hmong Studies Journal. 2010;11:1-29. • 6.Krippendorff K. Content analysis: An introduction to its methodology. Thousand Oaks, CA: Sage Publications, 2004. • 7.Baisch MJ, Vang PC, Peterman BR. An exploration of Hmong women’s perspectives on cancer. Asian Nurs Research. 2008;2(2): 82-91. • 8.Office of Minority Health, US Dept of Health and Human Services. National standards on culturally and linguistically appropriate services laws. http://minorityhealth.hhs.gov/templates/browse.aspx?lvl=3&lvlid=18.Accessed April 30, 2011. • 9. LaVeist TA, Isaac LA, Williams KP. Mistrust of health care organization is associated with underutilization of health services. Health Services Research. 2009;44(6):2093-2105. DOI: 10.1111/j.1475-6773.2009.01017.x