ORIGINAL ARTICLE

Reducing disparity in outcomes for immigrants with cancer:a qualitative assessment of the feasibility and acceptabilityof a culturally targeted telephone-based supportivecare intervention

Joanne Shaw & Phyllis Butow & Ming Sze & Jane Young &

David Goldstein

Received: 5 October 2012 /Accepted: 7 March 2013 /Published online: 22 March 2013# Springer-Verlag Berlin Heidelberg 2013

AbstractPurpose Australia has one of the most culturally diversepopulations in the world. Immigrant cancer patients’ pooreroutcomes compared to English-speaking patients confirmthe need for culturally sensitive supportive care interven-tions. The aims of this study were (1) to identify culturalsensitivities that are important to the acceptability of atelephone-based supportive care intervention and (2) toidentify cultural barriers and facilitators to interventionparticipation.Methods Patients and carers attending Chinese or Arabiccancer support groups were recruited. Two focus groupscomprising 12 patients and 4 carers, and two telephoneinterviews were conducted in the participants’ own lan-guage. A semi-structured interview format was utilised todetermine potential cultural sensitivities that may influencethe intervention delivery format as well as patients’ willing-ness to participate in telephone-based supportive care

interventions. Content analysis confirmed similar themesacross groups.Results The intervention was viewed favourably as a meansof providing information and support in the patient’s lan-guage. Cultural considerations included assurances of con-fidentiality, as cancer is not openly discussed withincommunities. An initial face-to-face contact was highlightedas the most important factor facilitating participation.Participants also recommended the inclusion of patient-initiated calls as part of the intervention.Conclusions This study provides cultural insights relevantto the development of a culturally sensitive telephone-basedsupportive care intervention for Arabic- and Chinese-speaking cancer patients. Participants highlighted the needfor face-to-face contact and inclusion of patient-initiatedcalls as important methodological considerations.

Keywords Focus groups . Migrants . Cancer . Culturalsensitivity . Supportive care interventions

Introduction

Australia has one of the most culturally diverse populationsin the world. Twenty-six percent of Australians were bornoverseas, and 2 % of the total population speak Englishpoorly or not at all [1]. Overall, 3.2 % of immigrants toAustralia come from Chinese- or Arabic-speaking countries[1]. US and UK studies confirm that immigrant cancerpatients have poorer outcomes compared to English-speaking patients [2], with lower screening and survivalrates [3, 4], higher rates of reported side effects [5], poorerquality of life [6] and greater distress [7, 8]. Significantly,poorer outcomes are reported to be unrelated to social

J. Shaw (*) : P. Butow : J. YoungSurgical Outcomes Research Centre, Sydney Local Health District& School of Public Health, Royal Prince Alfred Hospital,University of Sydney, PO Box M157, Missenden Road,Sydney, New South Wales 2050, Australiae-mail: joanne.shaw@sydney.edu.au

J. Shaw : J. YoungSydney School of Public Health, University of Sydney, Sydney,New South Wales, Australia

P. Butow :M. SzePsycho-Oncology Co-operative Research Group, Universityof Sydney, Sydney, New South Wales, Australia

D. GoldsteinDepartment of Medical Oncology, Prince of Wales Hospital,Randwick, New South Wales, Australia

Support Care Cancer (2013) 21:2297–2301DOI 10.1007/s00520-013-1786-7

economic status [2]. Limited data from Australian studiessuggest similar outcomes for Australian migrants [9].Reasons for these disparities are multifaceted butreflect differing cultural and religious beliefs and illnessconceptualisations [10–15], as well as practical barriers tocare, such as language difficulties, a lack of knowledgeabout the healthcare system and poor doctor–patient com-munication [11].

The poorer outcomes and high levels of unmet needexperienced by immigrant groups suggest a need for inter-ventions that are sensitive to the specific cultural needs ofthese patients. Telephone-based supportive care in thepatient’s own language is one strategy that may have utilityin addressing patients’ information and support needs in aculturally sensitive but cost-effective manner. In a researchcontext, telephone-based supportive care interventions de-livered to English-speaking cancer patients have been effec-tive in reducing unmet need and assisting with careco-ordination [16]. Similar programmes in the US haveaddressed either migrants’ psychosocial issues or patientnavigation issue and shown some benefits [17, 18].

Our group has recently completed a telephone-basedsupportive care intervention randomised control trial(RCT; the ‘CONNECT’ intervention) conducted with 775English-speaking colorectal patients. The findings of thismulticentre RCT highlighted that patient groups with higherneeds and morbidity (such as culturally and linguisticallydiverse (CALD) patients) benefit most from such interven-tions [19]. Three of the most common languages spoken bymigrants in Australia are Mandarin (1.7 %), Arabic (1.4 %)and Cantonese (1.3 %) [1]. We have therefore adapted theintervention to address the specific needs of these communitygroups (CALD-CONNECT). The CALD-CONNECT inter-vention comprises five telephone calls in the patients’ nativelanguage commencing soon after diagnosis and then at 1, 2, 4and 6 months after enrolment. The call schedule correspondsto times of high unmet need, possible participation in adjuvanttherapy and unplanned health service contact.

The content of each intervention call includes a structuredinterview protocol to encourage patients to express concerns,ask questions and discuss treatment with someone who un-derstands their cultural beliefs and speaks their language;assess patient knowledge of their cancer and their cancer care;and provide information about the cancer health care system—its structure, pathways, costs, key contacts, and patients’ andhealth professionals’ expected roles. Patients will be screenedfor unmet psychosocial, physical, information and supportneeds. Information about culturally specific services and re-sources in the patient’s language will be provided.

However, in line with MRC recommendations for devel-oping and evaluating complex interventions [20], prior toimplementation, the feasibility and acceptability of theintervention were assessed to determine barriers to

participation within the target cultural groups. The aims ofthis study were as follows: (1) to identify cultural sensitiv-ities that are important to the acceptability of the interven-tion and (2) to identify cultural barriers and facilitators tointervention participation.

Methods

Patients and family members attending community-basedChinese-speaking or hospital-based Arabic-speaking cancersupport groups in Sydney, Australia were invited to partic-ipate in a focus group conducted in their native language, orif unable to attend, in a semi-structured telephone interview.Participants were provided with information about the studytranslated into their native language, and written consentwas obtained. The discussions were moderated byresearchers fluent in either Chinese (Cantonese andMandarin) or Arabic. A semi-structured interview formatwas utilised. The intervention aims and a summary of theproposed content and structure were discussed with partic-ipants. Participants were also given an opportunity to clarifytheir understanding of the proposed intervention. Participantviews and experiences were then elicited to determine po-tential cultural sensitivities that may influence the interven-tion delivery format as well as patients’ willingness toparticipate in telephone-based supportive care interventions.Participant discussions were digitally recorded, translatedand transcribed. A conventional content analysis wasconducted [21]. Three researchers (JS, PB and MS) devel-oped the coding schedule, and themes and subthemesemerged from the coded data. Recruitment continued untiltheoretical saturation was achieved.

Results

Two focus groups (1.5–2 h) and two telephone interviewswere conducted. Six Cantonese-speaking patients, sixArabic-speaking patients and four spouse caregivers partic-ipated in the focus groups. Two Mandarin-speaking patientselected to participate in a telephone interview. Participantswere predominately female (67 %), with a mean age of 60.1 years. Patients had a range of cancers (listed in Table 1).Four main themes emerged from group discussions: (1)intervention relevance and acceptability, (2) participationfacilitators, (3) participation barriers and (4) role definitionfor intervention delivery.

Intervention relevance and acceptability

Overall, the concept of a telephone-based intervention wasviewed favourably by participants as a means of providing

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information and support in the patient’s language. All partic-ipants perceived that their poor English, lack of familiaritywith the health system, limited understanding about cancerand treatment, and uncertainty about specialist roles andresponsibilities had negatively impacted the quality of theircancer care. Participants believed that the proposed interven-tion could address these issues faced by non-English-speakingpatients within the Australian healthcare system.

The telephone-based delivery model was viewed posi-tively as it provided a means of accessing information andsupport without having to attend further appointments. Thiswas perceived as important for patients in active treatmentand/or who were unwell and was also perceived as cost-effective. Of particular benefit to patients was the ability todiscuss individual needs and receive information and sup-port tailored to these specific issues. The five-call structureof the intervention provided multiple opportunities to askquestions or raise issues of concern. Participants also per-ceived patients would also find the calls reassuring.

if your phone call service, in which the callers canspeak Chinese, can inform us of these types of aid,especially within the first three months [of diagnosis]…and give us information on what kinds of government orprivate resources we can access, it will be a lot better. .and also help us to copewith physical [e.g. financial] andpsychological issues, it will be good. (Chineseparticipant)

Participation facilitators

Although the telephone-based delivery was acceptable, par-ticipants recommended an initial face-to-face contact withthe person delivering the intervention as an important factorto facilitate participation. This was seen as crucial by bothfocus groups, as culturally there is a reluctance to discusssensitive information with a stranger. The initial face-to-facecontact was perceived as a way for potential participants toassess whether the person delivering the intervention under-stood their fears and anxieties. Several participants

perceived the intervention role should also extend from thatat initial contact at the time of diagnosis to that of a patientadvocate, attending patient appointments and facilitatingpatient consultations.

You need somebody as first point of contact, some-body who speak their language and explain everythingfrom A to Z and then the phone call[s] (Arabicparticipant)

Participants also recommended that at least one patient-initiated call be incorporated into the call schedule. Thisoption would provide patients with access to assistance intimes of high need between scheduled calls.

Maybe later you realise what your problems and ques-tions are…it would be good if you could call them andask (Chinese participant).

Participation barriers

Language proficiency was reported to be a key factor inpatients’ willingness to participate in the intervention.Native speakers were viewed more favourably as their un-derstanding extended to cultural considerations. Concernabout confidentiality was highlighted as a potential barrierto participation. Culturally, cancer is not discussed openlywithin either community, and there was some fear informa-tion may be disseminated to others if the person deliveringthe intervention was from the same community.

For Chinese people, you don’t even want to tell someof your relatives or friends too much…except for yourimmediate family, otherwise you won’t talk about ittoo much… some people even keep it from theirparents. But… the person you report to is directlyhelping you. But you have to let the patient knowhow their personal information provided will be keptconfidential, including their concerns… (Chineseparticipant).

Within the Arabic community, some families also preferto withhold cancer information from the patient to reducedistress. Other families conduct discussions in the presenceof their religious leader rather than with the medical team.These families would not accept a stranger discussing can-cer with the patient.

so in our background some families keep it from them[the patient] (Arabic participant).

Cultural considerations for the intervention

Participants held strong views regarding the skills requiredto deliver the intervention. In addition to providing

Table 1 Patient clinicalinformation Cancer site No. of participants

(n=14)

Breast 4

Brain 1

Colon 1

Gynaecological 2

Haematological 1

Head and neck 1

Lung 1

Lymphoma 1

Prostate 2

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information and acting as an emotional support, participantsconsidered that the person delivering the intervention alsoneeded to act as a cultural broker. They would be required tounderstand and acknowledge patients’ traditional view ofcare and also explain the principles of western medicinewhere they differed from the traditional view. Althoughthe information needs of patients were reported to be gen-erally similar to those of English-speaking patients, theChinese group reported they struggled with treatment ad-herence during chemotherapy due to severity of side effects.This group suggested that providing information related toside effect management as well as emotional support was animportant part of the role.

Members of the Arabic-speaking group highlighted an un-derstanding of the role religion plays in cancer diagnosis and theimpact of religious conceptualisations of cancer as important.Several members of the Arabic-speaking group also highlightedthat the gender of the person delivering the intervention wasimportant, as discussing sensitive issues with the opposite sexwould be difficult. Other members of the group perceived that ifthe person was knowledgeable, gender would not be an issue.

Discussion

This focus group study provided important information, basedon participant cancer experiences and cultural insights, to assistthe development of culturally sensitive telephone-based support-ive care interventions. There was considerable congruence ofthemes between the two migrant groups. Consistent with previ-ous reports [22, 23], language difficulties and a lack of knowl-edge about the healthcare system were found to contribute topsychological distress and unmet supportive care need. Theproposed telephone-based intervention delivered in a patient’snative languagewas perceived as an acceptablemethodology foraddressing the needs of Chinese and Arabic-speaking patients.

Based on their own experiences and understanding of thecultural complexities within communities, participants iden-tified several important methodological considerations tofacilitate participation, including the need for an initialface-to-face meeting between the patient and the researcherdelivering the intervention and the inclusion of patient-initiated calls. The language skill and cultural understandingof the researcher delivering the intervention were importantdeterminants of willingness to participate.

The importance of a sense of kinship has previously beenreported to influence the quality of communication and theongoing relationship between patients and oncologists [11].Face-to-face meetings were perceived as an important addi-tion to the methodology as they provided an opportunity forpatients to assess the communication skill of the staff mem-ber and also a way to establish an ongoing relationship priorto the first intervention call.

Language difficulties and a lack of familiarity with thehealthcare system can limit access to care and result in asense of isolation among patients [11]. Scheduling calls tocoincide with times of need and the inclusion of at least onepatient-initiated call during the intervention have the poten-tial to facilitate patient understanding and reduce anxiety.

Concern regarding confidentiality was identified as apotential barrier to participation, as cancer has traditionallynot been openly discussed within Chinese and Arab–Australian communities [18, 20, 21]. This non-disclosureis reportedly related to fear or stigma [12, 15, 24] and insome circumstances may also extend to the patient them-selves. While the majority of participants in this studyheld the view that patients should be informed of theircancer diagnosis, within the wider community, familymembers can act as gatekeepers, protecting the patientfrom the news of a cancer diagnosis. Such practicesmay limit the acceptability of any proposed intervention.Of note, our own data show that the majority of pa-tients wish full and open disclosure [25].

The results of this study need to be considered in light ofseveral limitations. First, given the heterogeneity ofChinese- and Arabic-speaking communities in Australia,the small number of participants in this study may not reflectthe views of all groups within these communities, althoughwe did observe saturation of themes. Factors such as age,religious beliefs and acculturation may also influencethe way in which cancer is discussed and thereforeparticipation in such an intervention. A second limita-tion is the recruitment methods employed which mayhave influenced the study results. All participants wererecruited through cancer support groups; this may haveresulted in a bias towards more proactive patients, there-fore overestimating the acceptability of the interventionwithin the wider community.

Conclusion

The focus group findings provide cultural insights relevantto the development of a culturally sensitive telephone-basedsupportive care intervention for Arabic- and Chinese-speaking cancer patients. The importance of face-to-facecontact in the recruitment phase of the study and the needfor patient-initiated calls are important methodological con-siderations. In addition to cultural awareness of illnessconceptualisations, navigating issues of confidentiality willbe challenging for intervention staff.

Conflict of interest The authors have no financial or personal re-lationships with other people or organisations that could bias theirinvolvement in this study. The authors have full control of the studydata, which are available for review.

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References

1. Australian Bureau of Statistics (2011) 2071.0—reflecting a nation:stories from the 2011 census, 2012–2013. Australian Bureau ofStatistics, Canberra ACT

2. Luckett T et al (2011) Psychological morbidity and quality of lifeof ethnic minority patients with cancer: a systematic review andmeta-analysis. Lancet Oncol 12(13):1240–1248

3. Australian Bureau of Statistics (2006) Australian social trends(4102.0). Australian Bureau of Statistics, Canberra ACT

4. Du XL et al (2007) Racial disparities and socioeconomic status inassociation with survival in a large population-based cohort ofelderly patients with colon cancer. Cancer 110(3):660–669

5. Krupski TL et al (2005) Ethnic variation in health-related quality of lifeamong low-income men with prostate cancer. Ethn Dis 15:461–468

6. Gotay CC, Holup JL, Pagano I (2002) Ethnic differences in qualityof life among early breast and prostate cancer survivors. Psycho-Oncology 11(2):103–113

7. Christensen S et al (2009) Prevalence and risk of depressivesymptoms 3–4 months post-surgery in a nationwide cohort studyof Danish women treated for early stage breast-cancer. BreastCancer Res Treat 113(2):339–355

8. Thomas B, Carlson L, Bultz B (2009) Cancer patient ethnicity andassociations with emotional distress—the 6th vital sign: a new lookat defining patient ethnicity in a multicultural context. J ImmigrMinor Heal 11(4):237–248

9. Weber M et al (2009) Cancer screening among migrants in anAustralian cohort; cross-sectional analyses from the 45 and UpStudy. BMC Publ Health 9(1):144

10. Goldstein D, Thewes B, Butow P (2002) Communicating in amulticultural society II: Greek community attitudes towards cancerin Australia. Intern Med J 32(7):289–296

11. Butow P et al (2011) From inside the bubble: migrants’ perceptionsof communication with the cancer team. Support Care Cancer19(2):281–290

12. Huang X et al (1999) Attitudes and information needs of Chinesemigrant cancer patients and their relatives. Aust NZ J Med29(2):207–213

13. Yeo SS et al (2005) Understanding community beliefs of Chinese-Australians about cancer: initial insights using an ethnographicapproach. Psycho-Oncology 14(3):174–186

14. Saleh M et al (2012) Knowledge, attitudes and beliefs ofArabic-Australians concerning cancer. Psycho-Oncology 21:195–202

15. Huang X et al (1999) Communicating in a multi-cultural society:the needs of Chinese cancer patients in Australia. ANZ J Med29:207–213

16. Young J et al (2010) Development and feasibility assessment oftelephone-delivered supportive care to improve outcomes for pa-tients with colorectal cancer: pilot study of the CONNECT inter-vention. Support Care Cancer 18(4):461–470

17. Ell K et al (2011) One-year follow-up of collaborative depressioncare for low-income, predominantly Hispanic patients with cancer.Psychiatr Serv 62:162–170

18. Ell K et al (2009) Cancer treatment adherence among low-incomewomen with breast or gynecologic cancer. Cancer 115(19):4606–4615

19. Young J et al (2013) Multicentre randomised trial of centralisednurse-led telephone-based care co-ordination to improve outcomesfollowing surgery for colorectal cancer. The CONNECT interven-tion. J Clin Oncol (in press)

20. Medical Research Council (2008) Developing and evaluating com-plex interventions: new guidance. BMJ 337:a1655

21. Hsieh H-F, Shannon SE (2005) Three approaches to qualitativecontent analysis. Qual Heal Res 15(9):1277–1288

22. Butow P (2011) Caring for immigrants with cancer: communica-tions challenges and interventions. In 13th World Congress ofPsycho-Oncology (IPOS 2011) Symposium, Antalya, Turkey,16–20 October 2011

23. Butow P et al (2011) Cancer survivorship outcomes in immigrants.J Clin Oncol 30(suppl):6111

24. Lui CW, Ip D, Chui WH (2009) Ethnic experience of cancer: aqualitative study of Chinese–Australians in Brisbane, Queensland.Soc Work Health Care 48(1):14–37

25. Mitchison D et al (2012) Prognostic communication preferences ofmigrant patients and their relatives. Psycho-Oncology 21(5):496–504

Support Care Cancer (2013) 21:2297–2301 2301