School of Psychology, University of Sydney. Presentation given at "Health Literacy Network: Crossing Disciplines, Bridging Gaps", November 26, 2013. The University of Sydney.

1. Navigating cancer care in a country not
your own: the immigrant experience.
Phyllis Butow
University of Sydney

2. Australia is multicultural
 24% of Australians were born overseas
 44% had at least one parent born overseas
 Over 560,000 people (2.8% of the total
population) speak English poorly or not at all
Australian census

3. Ethnic disparities in outcomes
 Minorities diagnosed with cancer have
poorer outcomes than majority groups:
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lower screening rates
lower survival rates
poorer quality of life
higher anxiety and depression
Du XL, et al. Cancer 109(11):2161-70, 2007
Chu KC, et al. J Natl Med Assoc 99(10):1092-100, 2007
Krupski TL. Et al. Ethnicity & Disease 15(3):461-8, 2005
Gotay CC. et al. Psycho-Oncology 11(2):103-13, 2002
Butow et al, European J of Cancer, In Press.

4. Psychological wellbeing in minority
versus mainstream cancer patients
Outcome
Distress
Std. Mean Difference
Ethnic group
IV, Random, 95% CI
Asian/API
US Hispanic
How is the system
failing minorities??
US minorities
All combined
Depression Asian/API
US Hispanic
Romanian Hung.
All combined
Anxiety
Asian/API
Luckett T et al. Lancet Oncology
2011; 12(13): 1240-1248.
US Hispanic
All combined
-1
-0.5
Favors mainstream
0
0.5
1
Favors minority

5. Disparities – Mechanisms
Barriers to Access and Quality of Care
Income
Education
Insurance
Poor health
High stress
Prevention
Economic
Social
Early
Detection
Cultural
Beliefs and attitudes
(eg decision-making)
Language proficiency,
Health literacy
Diagnosis
/
Incidence
Treatment
Posttreatment
QoL
Survival
and
Mortality
Ward et al. (2004): adapted from Freeman (1989) and Institute of Medicine (2003)

6.  Low health literacy disproportionately
affects racial and ethnic minorities
 US Dept of Health and Human
Services 2010

7. Ngui et al, J Health Care 2010;18:931-49
 Explored unmet needs in 1040
cancer survivors recruited through
cancer registries
 Non-White ethnicity only factor which
predicted higher information needs

8. Lindau et al, Amer J Obstets and Gynae
2002; 186: 938
 529 English-speaking patients in women's clinics
 Minority women half as likely to know purpose of Pap
test (9% vs 21%; P <.03) & significantly more likely to
have low literacy levels compared with white women
(46% vs 15%; P <.05)
 Literacy the only factor independently associated with
knowledge related to cervical cancer screening
(adjusted odds ratio, 2.25; 95% CI, 1.05-4.80)
 Physicians detected only 20% of the lowest readers

9. Program of research on CALD
Investigators
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Phyllis Butow
David Goldstein
Maurice Eisenbruch
Michael Jefford
Penelope Schofield
Afaf Girgis
Madeleine King
Rick Iedema
Statistician
 Melanie Bell
Research staff
 Lynley Aldridge (Co-ordinator)
 Ming Sze (PhD student)
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Skye Dong
Sara Fagir
Sarah Abdo
Suzanne Loway-Aziz
Evi Politi
Takis Katsampanis
Kathy Lee
Icie Wan

10. Collaborating oncologists

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Dr Rina Hui
Dr Amanda Goldrick
Dr Ray Ashgari
Dr Jodi Lynch
Dr Janette Vardy
Dr. Winston Liauw
Dr. Craig Lewis
Dr Fran Boyle
Dr Nicholas Wilken
Dr Liz Hovey
Funded by NHMRC
Cancer Australia
Beyond Blue
Cure Cancer Australia
SESAHS Multicultural Unit

11. Community partners
 Greek: Oncologist, GP, Psychologist, Cancer
Council Regional program
coordinator, Priest, Consumer
Representative, Member of Helenic Centre for
Language and culture
 Arabic: GP, Social worker, Cancer Council
Regional program coordinator, Consumer
Representative, Christian Priest, Muslim Religious
leader
 Chinese: Oncologist (palliative care), Retired
GP, Psychologist, Christian Religious
leader, Buddhist Religious leader, Consumer

12. Study designs
 Population-based cross-sectional study through
state cancer registries
 survivors diagnosed in past 6 years
 Clinic-based cross-sectional study through hospitals
 patients in active treatment, diagnosed in past 6-12 months
 Focus groups and interviews
 patients, carers and interpreters
 Audio-taping of first two consultations after
diagnosis with poor prognosis
 followed by interview with patient and family

13. SURVIVAL SAMPLE (n=596)
Demographics
% Immigrant
N=277
% Anglo
N=319
Cultural background:
English-speaking
Arabic-speaking
Greek-speaking
Chinese-speaking
9
13
24
Gender:
Male
54
49
Marital status:
Married or partnered
80
74
Place of residence: #
Rural (versus urban)
1
12
p<.0001
21
42
37
5
71
23
p<.0001
Education: #
<High school
High school/ tech college
University
54

14. SAMPLE (n=596)
Demographics
Years in Australia:
M (SD)
Immigrant
M (SD)
Anglo
30 (14.6 years)
Literacy
Understanding of the Australian Health System:
Not well:
%
%
27%
11%
P<0.0001
Confidence speaking English (immigrant only) :
Not confident
30%
Difficulty communicating with doctor
Often
24%

15. Top 10 unmet needs of immigrants
Needs
% of Immigrants
endorsing
• Managing FCR
30
• Written information in own language
27
• Information about cancer and its treatment
27
• Unable to do usual things
24
• Not sleeping well
24
• Medical Guidance
24
• Specialist who speaks my language
24
• Information about CAM
24
• Help asking questions
23
• Other health professionals who speak my language
22

16. Top 10 unmet needs of Anglos
Needs
% of Anglos
endorsing
• Unable to do usual things
19
• Managing FCR
17
• Changes in sexual relationships
17
• Lack of energy
16
• Not sleeping well
15
• Changes in sexual feelings
15
• Information about sexual relationships
14
• Support services
11
• Unable to work
11
• Moving on in life
10

17. Information
 Only 21% of immigrant
patientsreported receiving
information about their
cancer and its treatment in
their own language

18. Factors associated with severity of
unmet needs (Immigrants only)
 Immigrants who did not understand the
health system had 2 times higher unmet
needs (p<0.0003)
 Participants who needed an interpreter had
2 to 4 times higher unmet needs (p<0.0001)
 NB, getting an interpreter did not modify this!

19. Focus groups and interviews;
The patient experience
 22 Greek, 49 Chinese, 20 Arabic patients
 Any type / stage of cancer diagnosed in last three years
 Recruited from support groups, multicultural services
and hospitals
 68% poor English
 Data collection:
 Focus groups and interviews audio-taped, transcribed
and translated into English

20. Results
 Three sources of distress:
 Cancer
 A death sentence
 Stigma
 Family issues
 Protecting the family
 Support and Communication

21. Distance and Isolation …
 Communication
barriers
 “You have no way to
communicate you know …
You can’t hear, you can’t
speak. It’s very
frightening.”
– Mandarin speaker

22. Communication barriers
Information inaccessible
 “They gave me some books where I did the
chemotherapy, but I couldn’t read them,
they were in English.” Greek patient
 “He speaks, but what we hear is only 20%,
understand 20%.”
 “I just sit there and say yes, yes, but I left his
consultation and I didn’t understand most
things.” Arabic patient
 “You know it is like the chicken talking to the
duck. It’s different voices.” Cantonese
patient

23. Information needs
 “Those doctors are very
obliged by the law, … (to
provide adequate
information) but when they
are dealing with Chinese
patients they don’t do it.”
Mandarin patient
 “I don’t know if there is
racism in this country. If it is
someone who doesn’t
speak English then they
won’t give you a straight
answer.”
Arabic patient

24. Communication barriers:
Impact on physical and psych health
 His surgeon is a Caucasian, so is his dentist…he
(head & neck patient) couldn’t understand what they
said…so he skipped the dentist’s appointment. He
didn’t see a dentist at all. Cantonese patient
 Sometimes we want to express things but we can’t.
So it’s very difficult (psychologically) to relate to
them (hospital staff). Mandarin patient

25. Interpreter challenges
Worry about accuracy (both family and professionals)
 “I talk … for a few sentences and he interprets those few
sentences. But we don’t know whether the interpretation
is correct….” Cantonese Patient
Speak the right language!
 “I saw once a person who speaks Cantonese. They
found him a Vietnamese interpreter. They didn’t realize
we have Cantonese and Mandarin amongst Chinese”.
Cantonese patient

26. Audiotapes of consultations
 Arabic, Greek and Chinese patients, and Anglo
controls
 recruited through Oncology clinics in 9 Sydney hospitals
 First 2 consultations after diagnosis of metastatic
disease audio-taped:
 Interpreter usually present
 Professional or family
 Bi-lingual RAs interviewed patient and family after
second consultation
 144 consultations audiotaped

27. Consultation analysis
 Audiotapes transcribed
 All speech in Arabic, Chinese or Greek, translated
into English
 Of patient, carer or interpreter
 Transcript divided into units of speech
 Two bi-lingual RAs coded transcripts:
 inter-rater reliability 85%

28. Coding 1: Overall picture
 Each unit coded * for:
 Source
 who is speaking and to whom
 doctor, patient, family, nurse, interpreter
 Content
 diagnosis, prognosis, socio-emotional etc
 Function
 ask question, inform, reassure etc
* CanCode (Dent et al Patient Education and Counseling. 2005;56(1):35-

29. Coding 2: Interpreter exchanges
 Identical / Not Identical interpretation
 If not identical, what has changed?
 Medical terms omitted
 Missing information
 Added information
 Outcomes of alteration
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Softening
More authoritative and directive
Clarifying
Misinformation
Emotional tone changed

30. Length of consultations
Mean number of words
(excluding translations)
Anglo-Australians
2246
Immigrants (with interpreter)
1443
Immigrants (without interpreter)
2093
P = 0.005

31. What does the doctor discuss?
•
Doctors spoke proportionally less with immigrants with
interpreters than with Anglo-Australians
•
•
•
Doctors spent proportionally more time
•
•
•
about cancer related issues (p = 0.005),
summarising and informing (p ≤ 0.003)
on other medical issues (p = 0.0008)
directly advising (p = 0.0008)
More paternalistic style? Or responding to consumer
preferences?

32. Results
 On average, interpretations were
equivalent 60% of the time
 95% CI: 52, 68%
 Professionals :
 Family / friends
65%
50%
 CI for the difference = 3, 28%, p = .02

33. Impact
 68% of non-equivalent interpretations
were judged to have had no or a
positive effect
 32% were judged to have had a
potentially negative effect

34. Impact? Potentially negative
Outcome
Increased certainty
Mean
Range
proportion
3%
2-5%
Dr: We think there is a 40% chance that the treatment will prolong
your life
Int: The treatment will prolong your life
Family interpreter

35. Impact? Potentially negative
Outcome
Reduced certainty
Mean
Range
proportion
1%
0.7-2.2%
Dr: You must take the tablets every day for them to work
Int: You should take the tablets every day
Professional interpreter

36. Impact? Potentially negative
Outcome
Euphemistic
Mean
Range
proportion
1.4%
0.01-2.8%
Dr: Your cancer has grown despite the chemotherapy we have
given you.
Intr: The growth in your lungs has got a little bigger, although you
have had chemotherapy
Professional interpreter

37. Impact? Potentially negative
Outcome
Misinformation
Mean
Range
proportion
10%
7-12%
Dr: From the information I got from you regarding your tumour in
China I don’t think that you had that particular receptor looked at.
Int: From the information you gave me about treatment in China, I
felt you hadn’t received this treatment
Professional Interpreter

38. Impact? Potentially negative
Outcome
Misinformation
Mean
Range
proportion
10%
7-12%
Dr: I think it is better that she knows. Especially when she is
asking the question, for her to know and to be very honest with
her. She then knows that she can trust me to be honest and I will
answer her questions.
Int: Hmm, yeh, yeh
Dr: [Went on explaining the extent of the disease - 3A lung cancer]
Int: She said...it should be in its initial stage.

39. Prognosis
 Non-interpreted speech often about
prognosis
 50% of doctor and 59% of patient
prognostic speech units not interpreted
or interpreted non-equivalently

40. Conclusions?
 CALD patients report communication
and navigation challenges, and a high
unmet need for information
 Doctors explain less to immigrants than
Anglo-Australians
 Mis-interpretation common

41. Interpreters
 We cannot under-estimate the impact
of the interpreter. Further research is
need to understand their:
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Motivations
Assumptions
Dilemmas
Role boundaries
Training needs

42. Interpreters
 Presence of professional interpreter
is critical
 Ideally interpreter and Dr meet before
consultation to:
 brief interpreter
 ensure medical terms and concepts
understood
 discuss cultural issues and optimal ways to
convey messages

43. Cultural advocates / navigators may
be necessary
 Bilingual nurses who contact patient
at diagnosis and critical transitions?
 Cost-effective strategy may be
centralised phone contact

44. CALD CONNECT
 5 phone calls at key times in illness trajectory, incorporating:
 needs and understanding assessment
 care co-ordination
 link to written materials in patient’s language
 referral and liaison back to treatment team as needed
 Patients and families contact at additional times if needed
 Focus groups supported this model
 Shaw J et al, Supportive Care in Cancer. 2013 epub
 Development of CALD care-co-ordination questionnaire
underway (Young et al: CINSW funding)

45. Systematic review of colorectal cancer
interventions for CALD
 32 included studies
 Patient education (phone or in-person) +
navigation increased colorectal cancer screening
rates by about 15 percentage points, in minority
populations.
 Provider-directed multi-modal interventions
(education sessions and reminders, + pure
education) increased colorectal cancer screening
rates, also by about 10 to 15 percentage points
 Naylor K et al, J Gen Intern Med 2012; 27: 1033-46

46. Interventions
 Translated materials
 Access resources from countries of origin?
 Survey of resources and adaptation of existing
resources for survivors underway:
 Jefford et al, Cancer Australia funding

47. Interventions
 Audiotaped Oncology consultations
 To allow review at home, and with family
 Question prompt lists in patient’s language
 To foster patient empowerment
 Information booklets in patient’s language
 Phase II study underway
 Schofield et al (NHMRC funded)

48. Interventions
 Cross-cultural training for health professionals:
 Awareness of vulnerability in some CALD patients:
 Refugee status, lack of acculturation, low SES, isolation, cultural
differences in views of illness and treatment
 Principles and schemas to assist HPs in interacting
with CALD patients
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recognising one’s own cultural bias
separating clinicians’ values and beliefs from their patients’
accessing and acquiring culturally relevant knowledge
learning how to elicit patients’ illness explanatory models
how to use relevant resources (e.g. interpreters and translated
resources) effectively

49. Cross-cultural training
 Phase II feasibility study underway
 online training only versus online
training plus face-to-face workshop
 Meiser et al, ARC funded.

50. Summary
 We need to better understand health
literacy issues in CALD patients
 Interventions needed!