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Refugees and Cancer: A Nebraska Perspective
Megan S. Kelley, PhD, CHES
University of Nebraska-Lincoln
Objectives▸ Describe the demographic distribution of
Nebraska’s refugee population
▸ Name common challenges to providing cancer education and care for refugees
▸ Summarize evidence-based best practices for providing cancer education and care to refugees
▸ Identify organizations that provide cancer-related services to refugees in Nebraska
Who is a refugee?
Who is a refugee?
Who is a refugee?
Who is a refugee?
Who is a refugee?
Who is a refugee?
Who is a refugee?
Who is a refugee?
Infographic from the Office of the United Nations High Commissioner
for Refugees, http://www.unhcr.org/en-us/figures-at-a-glance.html
Infographic from the Office of the United Nations High Commissioner
for Refugees, http://www.unhcr.org/en-us/figures-at-a-glance.html
In 2016, there are 21.3 million refugees in the world.
Since 1975, more than3.3 Million Refugees
Resettled in US
Data from the US State Department Refugee Processing Center
www.wrapsnet.org
Number of Refugees Resettled in the United States, 2003-2004
Data from the US State Department Refugee Processing Center
www.wrapsnet.org
Data from the US State Department Refugee Processing Center
www.wrapsnet.org
Number of Refugees Resettled in the United States, 2005-2006
Data from the US State Department Refugee Processing Center
www.wrapsnet.org
Number of Refugees Resettled in the United States, 2007-2008
Data from the US State Department Refugee Processing Center
www.wrapsnet.org
Number of Refugees Resettled in the United States, 2009-2010
Data from the US State Department Refugee Processing Center
www.wrapsnet.org
Number of Refugees Resettled in the United States, 2011-2012
Data from the US State Department Refugee Processing Center
www.wrapsnet.org
Number of Refugees Resettled in the United States, 2013-2014
Data from the US State Department Refugee Processing Center
www.wrapsnet.org
Number of Refugees Resettled in the United States, 2015-2016
Where do Nebraska Refugees come from?
Word Cloud created using www.tagxedo.com
Where do Nebraska Refugees come from? Nebraska Refugee Countries of Origin
Data from the US State Department Refugee Processing Center
Map created using https://www.amcharts.com
Where have Nebraska Refugees Resettled? Number of refugees resettled in Nebraska cities since 2002
Data from the US State Department Refugee Processing Center
Map created using www.mapsdata.co.uk
Where have Nebraska Refugees Resettled?
Number of refugees
resettled in Nebraska cities
since 2002
Data from the US State
Department Refugee
Processing Center
Where have Nebraska Refugees Resettled?
Number of refugees
resettled in Nebraska cities
since 2002
Data from the US State
Department Refugee
Processing Center
Where have Nebraska Refugees Resettled?
Number of refugees
resettled in Nebraska cities
since 2002
Data from the US State
Department Refugee
Processing Center
Where have Nebraska Refugees Resettled?
Number of refugees
resettled in Nebraska cities
since 2002
Data from the US State
Department Refugee
Processing Center
Where have Nebraska Refugees Resettled?
Number of refugees
resettled in Nebraska cities
since 2002
Data from the US State
Department Refugee
Processing Center
Where have Nebraska Refugees Resettled?
Number of refugees
resettled in Nebraska cities
since 2002
Data from the US State
Department Refugee
Processing Center
Where have Nebraska Refugees Resettled?
Number of refugees
resettled in Nebraska cities
since 2002
Data from the US State
Department Refugee
Processing Center
Secondary Migration
“As humanitarians and health professionals, we have a collective responsibility to anticipate… new challenges, understand the increasingly complex environment in which we work, and adapt our interventions accordingly.
Spiegel, 2010
Journey to Nebraska
Implications for cancer education and care
Journey to Nebraska
Step 1:Flee from home country due to war, persecution, or disaster.
Implications for cancer education and care:
- Experience of war, terror, torture, trauma
- Exposure to cancer risk factors
- Rates of cancer education and screening
“Refugees have often been exposed to… traumatic events that leave permanent markson their physical and emotional health [and] may affect the way they relate to medical professionals and their ability to tolerate procedures that rekindle fears and feelings of vulnerability.
Schapiro, 2016
“Back in our country, death was so closebecause of the war and violence. Every day, you think you can die that day and death is always there. Because of this, you don’t pay attention to your personal health. That’s why a lot of people don’t go to the doctor unless it gets very serious… Many people have carried this mentality to the United States.
Iraqi refugee woman quoted in Saadi, Bond, & Percac-Lima, 2011
Experience of war, terror, torture, trauma
Home country focus on day-to-day survival; attention to personal health seen as a luxury.
Saadi, Bond, & Percac-Lima, 2011
Refugees more likely to experience pre-migration onset of posttraumatic stress disorder, major depressive episode compared to voluntary migrants
Rasmussen et al., 2012
Exposure to cancer risk factors
Migrants from non-Western countries more prone to cancers from infections earlier in life
Arnold et al., 2010; McDermott et al., 2011
For example, migrants from East Asia and Sub-Saharan Africa at highest risk, Eastern Europe at intermediate risk of Hepatitis B infection
Rossi et al., 2012
Developing countries are disproportionately affected by cancers related to infection; they are also experiencing increase in cancers related to adoption of western dietary, behavioral practices
Jemal et al., 2010
Rates of cancer education and screening
Lack of preventive screening in home countries
One study of newly arrived refugee women from Cuba, Bosnia, Vietnam, and other countries found that 86% of those older than 40 had never had a mammogram (vs 33% America); 76% had not had a Pap test in past 3 years.
Barnes & Harrison, 2004
Rates of cancer education and screening
Lack of context for cancer education
For example, Khmer language has no words for cervix, Pap smear, cervical cancer
Kim et al., 2016
Rates of cancer education and screening
Spiritual priorities
Trust in a god vs. trust in a doctorSaadi, Bond, & Percac-Lima, 2011
Belief that people shouldn’t meddle with God’s workGhatrifi et al, 2006
Journey to Nebraska
Step 2:Interview with the United Nations High Commissioner for Refugees, a Resettlement Support Center, and the US Dept of Homeland Security
Step 3:Undergo medical screening.
Implications for cancer education and care:
- Time in transition / at refugee camp
Time in transition
Poor health and health care conditions in refugee camps or settings of war and unrest
▸ Limited / disrupted access to medical care, public health services, treatment
▸ Lack of specialized care
Loewenberg, 2005; Mateen et al., 2012
Journey to Nebraska
Step 4:Assignment to a US-based resettlement agency.
Step 5:Travel to the United States and arrive in Nebraska.
Implications for cancer education and care:
- Social and cultural adjustment
- Availability and accessibility of resources
- Medical screening and immunizations
- Need for more data
Social and cultural adjustment
Common barriers to care:▸ Fear of pain and diagnosis▸ Modesty concerns▸ Work and childcare commitments▸ Prohibitive cost▸ Unemployment, lack of health insurance▸ Lack of transportation▸ Distrust of doctors▸ Language
Elwell et al., 2013; Saadi, Bond, & Percac-Lima, 2015
Social and cultural adjustment
As well as common facilitators:▸ Outreach efforts and appointment reminders▸ Personal contact from health providers▸ Positive perceptions of US healthcare system &
health professionalsSaadi, Bond, & Percac-Lima, 2015
Social and cultural adjustment
Refugees may not be aware of available screening services.
Al-Amoudi et al., 2013; Carroll et al., 2007b
Greater acculturation associated with increases in health knowledge, preventive behaviors such as screening, and seeking health information
Helweg-Larsen & Stancioff, 2008; Ivanov, Hu, & Leak, 2010; Javdan &
Cassileth, 2016; Nguyen-Truong et al., 2012; Saadi, Bond, & Percac-Lima,
2015
Availability and accessibility of resources
Lack of standard protocols or guidelines for medical care for refugees
Unique needs: ▹ Cultural▹ Psychological▹ Language ▹ Socioeconomic
Schapira, 2016
Availability and accessibility of resources
Refugee Cash and Medical Assistance funds▸ Available throughout the state through
Nebraska DHHS Refugee Resettlement Program
Nebraska DHHS Refugee Resettlement Program State Plan, FY 2015-16
Medical Screening and Immunizations
Federally funded when completed in 90 days
Priority given to new arrivals, but open to secondary migrants
Opportunity for referrals to primary or specialized care providers
Nebraska DHHS Refugee Health Screening Procedures, 2015-16
Medical Screening and Immunizations
Screening & VaccineHepatitis AHepatitis BTetanus, Diphtheria, PertussisMeasles, Mumps, RubellaChicken pox / ShinglesMeningococcalPneumococcalTuberculosisFlu
Additional ScreeningSTDs: Syphilis, Chlamydia, Gonorrhea, HIV/AIDSHepatitis CPregnancyParasitic infectionLice/ScabiesCBC (white blood cell count)Chem 8 (metabolism)MalariaLeadUrinalysis
Nebraska DHHS Refugee Health Screening Procedures, 2015-16
Medical Screening and Immunizations
Additional assessmentReview of Overseas Medical DocumentHeight/Weight/BMIBlood pressureVisionHearingDentalPhysical
Nebraska DHHS Refugee Health Screening Procedures, 2015-16
Medical Screening and Immunizations
Nebraska Comprehensive Cancer Control State Plan
Priority 3. Reduce cancer disparities to achieve health equity
Strategy vii. Establish refugee screening events to provide screening and education.
Nebraska Comprehensive Cancer Control State Plan, 2011-2016
“It is essential providers understand that refugees may have been subjected to multiple stressors... prior to their arrival.. The initial screening process can serve as an opportunity for providers to discuss with refugees the potential psychosocial difficulties they may experience during resettlement.
Nebraska DHHS Refugee Health Screening Procedures, 2015-16
Medical Screening and Immunizations
“[Cancer] statistics often... do not include specific statistical information about refugees and asylum seekers. This makes it difficult to estimate accurately the true cancer burden among immigrants and refugees, further exacerbating the unmet needs of this population.
Amodio and Roy, 2015
Need for more data
Only 2 out of 68 publically available national health data sets (3%!) includes information about refugee health status.▸ National Epidemiologic Survey on Alcohol and
Related Conditions▸ New Immigrant Survey
Semere, Yun, Ahalt, Williams, & Wang, 2016
Need for more data
Canada: “Mortality rates differed by region of birth, and were higher among refugees than other immigrants.”
DesMeules et al., 2005
Denmark: “Compared with Danish-born individuals, refugees…had lower hazard ratios of stroke and breast cancer within 5 years after arrival; however, HRs increased at longer follow-up.”
Norredam et al., 2014
Netherlands: “The most common causes of death among asylum seekers are cancer, cardiovascular diseases and external causes.”
van Oostrum et al., 2011
Need for more data
Need for more community-level studies to assess cancer rates, screening, care
Saadi, Bond, & Percac-Lima, 2012
What do we know?
A 2014 study among Bhutanese women in Omaha found:▸ Limited knowledge of cervical cancer and screening▸ 22.2% had ever heard of a Pap test▸ 13.9% had ever had a Pap test▸ Reported barriers to prevention:
▹ Limited knowledge▹ Shyness / exposure / stigma▹ Language / healthcare navigation▹ Cost / limited insurance▹ Transportation▹ Trust in providers and interpreters
Haworth, Margalit, Ross, Nepal, & Soliman, 2014
What do we know?
Local data availability▸ Nebraska Refugee Health Program intake
screenings▸ UNMC Center for Reducing Health Disparities
Refugee Health Needs Assessment (Omaha)▸ Individual organizations▸ Other?
RefugeeCancer Education
Evidence-based Practices:- Cultural and linguistic
adaptation- Health beliefs and
rituals- Community-based
education
Cultural and Linguistic Adaptation
Language and communication influence the entire spectrum of health care access
Morris et al., 2009
Linguistically and culturally-tailored patient navigator programs associated with decreased disparities in cancer screening among refugee women
Percac-Lima et al., 2013, 2012
Health Beliefs and Rituals
Learn about and address beliefs and practices regarding key behaviors, such as perceptions of personal risk related to smoking or unprotected sex.
Ghatrifi et al., 2006; Harris et al., 2012
Community-based Education
Provide health education in community-based settings with interpreters
Gondek et al., 2015
Provide education on specific diseases, but also on patient rights and needed environmental changes to support health behaviors and health care utilization
Murray, Mohamed, & Ndunduyenge, 2013
RefugeeCancer Screening and Care
Evidence-based Practices:- Learn about the patient- Use a medical interpreter- Take a holistic approach- Get creative
Learn about the patient
Invite patients to share their stories.Refugee patients may not think it appropriate to share about traumatic experiences if not asked by physician
Shannon et al., 2014
Learn about the patient
Learn about cultural or spiritual background▸ Gender concordance with interpreters and
clinicians▸ Traditional practices or foods▸ Beliefs about key health behaviors▸ Beliefs about life and death▸ Beliefs about social and family hierarchy,
gender roles
Al-Amoudi et al., 2013; Carroll et al., 2007a&b; Fink, Helm, Belknap, & Johnson-
Agbakwu, 2014; S. Mahagoub, personal communication, Jul 25 2016; Morrison et al.,
2013; Vahabi et al., 2015
Learn about the patient
Learn about each individual’s barriers to health care▸ Transportation▸ Insurance coverage▸ Availability of language / health education
Carroll et al., 2007a
“Oncologists are sometimes frustrated by the interpreter’s lack of knowledge of… cancer medicine, and are sometimes reminded by interpreters that there are actually no words in the native language that describe the concept.
Schapira, 2016
Medical Interpretation
Use trained professional medical interpreters.Associated with higher use of preventive servicesRoles:▸ Language accuracy▸ Cultural broker▸ Patient advocate
Need for cancer-specific training programs for interpreters, providers
Divi et al., 2007; Joshi et al., 2013; Morrison et al., 2012; Schapira, 2016;
Take a holistic approach
Treat the “whole” patient to address multiple complex needsCoordinate among:▸ Medical▸ Mental▸ Behavioral▸ Legal▸ Social
Divi et al., 2007; Joshi et al., 2013; Schapira, 2016
Take a holistic approach
Provide compassionate careEven for families who have experienced stress and heartbreak, a friendly and positive attitude from host country improves health outcomes
Samarasinghe & Arvidsson, 2002
Get creative
Find ways to incorporate best practices from both home countries and the U.S.
Murray, Mohamed, & Ndunduyenge, 2013
Incorporate culturally-appropriate complementary therapies
Javdan & Cassileth, 2016
Cancer Resources for Nebraska Refugees
Cancer Resources for Nebraska Refugees: Services
LanguageLinc Medical interpretation in-person or by phonewww.languagelinc.com
Community Action of NebraskaPrograms include housing, health, food and nutrition, child development, transportation, asset development, employment programs, disaster relief…http://www.canhelp.org/home
Cancer Resources for Nebraska Refugees: Legal
Legal Aid of Nebraska Free legal representation for underprivileged Nebraskans*Medical-Legal Partnership - an interdisciplinary team of healthcare staff, attorneys, and paralegals who integrate legal assistance into the medical setting as a vital component of patient care.http://www.legalaidofnebraska.org/
Nebraska AppleseedEfforts focus on health care, immigration policy, child welfare, povertyhttps://neappleseed.org/
Cancer Resources for Nebraska Refugees: Omaha
Incoming Health ScreeningsCHI Alegent Creighton Florence Residency Clinic
Refugee Social ServicesRefugee Empowerment CenterLutheran Family Services
Nebraska DHHS Refugee Resettlement Program State Plan, FY 2015-16:
Additional Resources for Nebraska Refugees: Omaha
AdvocacyOmaha Refugee Task ForceBenson Area Refugee Task Force
Refugee Health CollaborativeOther Services
Yates Community CenterHeartland Family Service… and others!
Cancer Resources for Nebraska Refugees: Lincoln
Incoming Health Screenings:Lincoln-Lancaster County Health Department
Refugee Social ServicesLutheran Family ServicesCatholic Social ServicesLincoln Literacy
Nebraska DHHS Refugee Resettlement Program State Plan, FY 2015-16:
Additional Resources for Nebraska Refugees: Lincoln
Advocacy:New Americans Task Force
Other ServicesCenter for People in NeedClinic with a HeartHealth 360 Integrated Care Clinic(People’s Health Center & LFS)… and others!
Cancer Resources for Nebraska Refugees:Grand Island
Incoming Health ScreeningsCentral District Health Department
Other ServicesLutheran Family Services
St. Mary’s Immigration Program… and others!
Nebraska DHHS Refugee Resettlement Program State Plan, FY 2015-16:
Cancer Resources for Nebraska Refugees:Lexington
Refugee Social ServicesUnder review*
Other ServicesLutheran Family Services… and others!
Nebraska DHHS Refugee Resettlement Program State Plan, FY 2015-16:
Cancer Resources for Nebraska Refugees:Lexington
Refugee Social ServicesUnder review*
Other ServicesLutheran Family Services… and others!
Nebraska DHHS Refugee Resettlement Program State Plan, FY 2015-16:
Refugees and Cancer:Recommendations
▸ Improve refugee health data collection and accessibility
▸ Increase communication and coordination among social service agencies, cancer care providers
▸ Make healthcare more accessible▹ Explore use of telecare to address health needs
of rural refugees▹ Continue building partnerships to expand
access to resources▹ Employ culturally and linguistically
appropriate communication
Resources
▸ Communication tools▹ Health Literacy Universal Precautions Toolkit,
Agency for Healthcare Research and Quality▹ Clear Communication Index,
Centers for Disease Control and Prevention▸ Culture / Language tools
▹ Ethnomed.org, University of WashingtonLearn about cultures of refugee groups, see patient education examples
▹ HealthReach, National Institutes of HealthPatient education in many languages
Acknowledgments
▸ Kristin Gall▸ Libby Crockett▸ Seif Mahagoub
▸ Oladapo Akinmoladun
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▸ van Oostrum, ,I.E.A., Goosen, S., Uitenbroek, D. G., Koppenaal, H., & Stronks, K. (2011). Mortality and causes of death among asylum seekers in the netherlands, 2002–2005. Journal of Epidemiology & Community Health,65(4), 376-383.
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Megan S. KelleyUniversity of Nebraska-Lincoln
Department of Nutrition and Health Sciences
