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Navigating cancer care in a country not your own: The immigrant experience. Professor Phyllis Butow.


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

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Navigating cancer care in a country not your own: The immigrant experience. Professor Phyllis Butow.

  1. 1. Navigating cancer care in a country not your own: the immigrant experience. Phyllis Butow University of Sydney
  2. 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. 3. Ethnic disparities in outcomes  Minorities diagnosed with cancer have poorer outcomes than majority groups:     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. 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. 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. 6.  Low health literacy disproportionately affects racial and ethnic minorities  US Dept of Health and Human Services 2010
  7. 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. 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. 9. Program of research on CALD Investigators         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)         Skye Dong Sara Fagir Sarah Abdo Suzanne Loway-Aziz Evi Politi Takis Katsampanis Kathy Lee Icie Wan
  10. 10. Collaborating oncologists           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. 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. 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. 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. 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. 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. 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. 17. Information  Only 21% of immigrant patientsreported receiving information about their cancer and its treatment in their own language
  18. 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. 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. 20. Results  Three sources of distress:  Cancer  A death sentence  Stigma  Family issues  Protecting the family  Support and Communication
  21. 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. 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. 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. 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. 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. 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. 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. 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. 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      Softening More authoritative and directive Clarifying Misinformation Emotional tone changed
  30. 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. 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. 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. 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. 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. 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. 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. 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. 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 should be in its initial stage.
  39. 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. 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. 41. Interpreters  We cannot under-estimate the impact of the interpreter. Further research is need to understand their:      Motivations Assumptions Dilemmas Role boundaries Training needs
  42. 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. 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. 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. 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. 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. 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. 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      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. 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. 50. Summary  We need to better understand health literacy issues in CALD patients  Interventions needed!