Systematic Review of the Primary Research on Minority Ethnic Groups and End-of-Life Care From the...

Vol. 43 No. 2 February 2012 Journal of Pain and Symptom Management 261

Review Article

Systematic Review of the Primary Research onMinority Ethnic Groups and End-of-Life CareFrom the United KingdomNatalie Evans, BSc, MSc, Arantza Me~naca, BA, PhD, Erin V.W. Andrew, BA, MPhil,Jonathan Koffman, BA, MSc, PhD, Richard Harding, BSc, MSc, PhD, DipSW,Irene J. Higginson, BMedSci, BM BS, FFPHM, FRCP, PhD,Robert Pool, BA, MA, PhD, and Marjolein Gysels, BA, MA, PhD,on behalf of PRISMABarcelona Centre for International Health Research (CRESIB) (N.E., A.M., E.V.W.A., R.P., M.G.),

Hospital Cl�ınic - Universitat de Barcelona, Barcelona, Spain; King’s College London, Department

of Palliative Care, Policy and Rehabilitation, School of Medicine at Guy’s King’s and St. Thomas

Hospitals, and Cicely Saunders Institute (J.K., R.H., I.J.H., M.G.), London, United Kingdom;

and Centre for Social Science and Global Health (R.P.), University of Amsterdam, Amsterdam,

The Netherlands

Abstract
Context. Patients from minority ethnic groups experience lower rates of
referrals to end-of-life (EoL) care services, higher levels of dissatisfaction withservices, and perceive some services as culturally inappropriate.

Objectives. To systematically review original studies of minority ethnic groupsand EoL care in the U.K. and appraise their quality.

Methods. Searches were carried out in 13 electronic databases, eight journals,reference lists, and the gray literature. Studies of minority ethnic groups and EoLcare in the U.K. were included. Studies were graded for quality and key themeswere identified.

Results. Forty-five studies met inclusion criteria. Study quality was good onaverage. Identified key themes included age structure; inequality by disease group;referrals; caregivers; place of care and death; awareness of services andcommunication; and cultural competency. Strategies described for the reductionof inequities were partial and reactive. The format of 10 studies prevented qualitygrading; these were, however, reviewed as they provided unique insights.Variations in terminology and sampling frames complicated comparison acrossstudies.

Conclusion. The results highlight the multiple and related factors thatcontribute to low service use and substandard quality of services experienced byminority ethnic groups, and the need for authors to clarify what they mean by‘‘culturally competent’’ EoL care. The synthesis of diverse and disparate studies

Address correspondence to: Natalie Evans, BSc, MSc,Barcelona Centre for International Health Re-search (CRESIB), Hospital Cl�ınic - Universitat de

Barcelona, C/Rossell�o 132 Sobre �atico, 08036 Bar-celona, Spain. E-mail: [email protected]

Accepted for publication: April 12, 2011.

� 2012 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

0885-3924/$ - see front matterdoi:10.1016/j.jpainsymman.2011.04.012

mailto:[email protected]

http://dx.doi.org/10.1016/j.jpainsymman.2011.04.012



262 Vol. 43 No. 2 February 2012Evans et al.

underpins a number of key recommendations for health care professionals andpolicymakers. Tackling these epidemiological, demographic, institutional, social,and cultural factors will require a systematic and organization-wide approachrather than the current piecemeal and reactive interventions. J Pain SymptomManage 2012;43:261e286. � 2012 U.S. Cancer Pain Relief Committee. Published byElsevier Inc. All rights reserved.

Key Words
Minority ethnic groups, palliative care, end of life, systematic review, cultural competence,access
IntroductionIn theU.K., inequities in access to health care

and the quality of services provided related topatients’ ethnicity have long been recog-nized.1,2 Efforts to ensure equity in access toand outcomes from health care services forminority ethnic groups, however, have in-creased considerably following the publicationin 1999 of the Macpherson Report,3 which de-scribed the failure of public services to providehigh-quality services to people because of their‘‘color, culture, or ethnic origin’’ as ‘‘institu-tional racism.’’ In response to the report, anamendment was made to the Race RelationsAct 19764 requiring public institutions to elim-inate racial discrimination and actively pro-mote equality of opportunity and goodrelations.5,6 The amendment is applicable toall public institutions, including health careproviders.

When compared with other health care spe-cialties, end-of-life (EoL) care providers havebeen late to recognize equity issues for minorityethnic groups7 (the term ‘‘minority ethnicgroup’’ is used, in accordance with the officialclassificationusedby theU.K.Office ofNationalStatistics, to describe groups other than ‘‘WhiteBritish’’). This is a result, in part, of the youngerage structure of the minority ethnic populationand their lower rates of cancer and higher ratesof nonmalignant diseases.7e9 Nonetheless, is-sues of equity of access toEoL care andof appro-priate service provision have been identified:patients from minority ethnic groups havebeen found to experience lower rates of refer-rals to EoL care services,10 report higher levelsof dissatisfaction with services received,11e13

and perceive some services as culturallyinappropriate.14,15

In light of such findings, research into theEoL care experiences ofminority ethnic groupsis increasing, and access to care and ‘‘culturalcompetency’’ in care are topics gaining atten-tion in the EoL care policy arena.16e20 Thisgrowing body of researchhas inspired anumberof reviews of the literature.9,10,17,21e27 Further-more, a number of broader reviews of cancerservices and minority ethnic groups have re-ported findings regarding EoL care.28e30 A re-cent review and evaluation of these reviews,31

however, revealed that they either did not fol-low a systematic search procedure,9,17,24e26,30

failed to grade the quality of studies included,21e23,28

or were restricted by ethnic group,23 condition,28,29

or aspect of EoL care.10,22,25,27

In response to this lack of a comprehensiveand critical review of the literature, this articleaims to 1) systematically identify and review alloriginal studies relating to minority ethnicgroups and EoL care in the U.K.; 2) to criticallyexamine the quality of studies; 3) to determinekey themes across studies; and 4) to identify cur-rent knowledge gaps. More than 10 years sincethe publication of the Macpherson Report,3

now is an appropriatemoment to review the pri-mary research (qualitative and quantitative) onminority ethnic groups andEoL care in theU.K.

MethodsReview ProcedureThis review was undertaken as part of the

‘‘PRISMA’’ program.32 PRISMA stands for ‘‘Re-flecting the Positive diveRsities of EuropeanprIorities for reSearch and Measurement inend of life cAre,’’ and is a major three-year coor-dinating action project funded by the EuropeanUnionunder theSeventhFrameworkProgramme

Table 1Databases and Hand Searches/Search Terms

Databases (Updated Search toMid-October 2010) Search Terms

Hand Search of Journals (UpdatedSearch to Mid-October 2010)

Web of Knowledge of all databases(Web of Science with ConferenceProceedings (1899e2010), BIOSISPreviews (1969e2010), Inspec(1969e2010), MEDLINE(1950e2010), Journal CitationReports (2000e2010)); OVID (AMED(1985e2010), MEDLINE(1950e2010), PsycINFO (1806e2010),EMBASE (1980e2010)); Cancerlit(1975e2010); ASSIA (1987e2010);CINAHL (1982e2010); and CochraneReviews (1996e2010).

(‘‘United Kingdom’’ OR U.K. OR BritainOR England OR Wales OR ScotlandOR ‘‘Northern Ireland’’)

AND(palliative OR terminal OR ‘‘end of life’’OR end-of-life OR death OR dyingOR ‘‘continu* care’’ OR ‘‘advancedirective*’’ OR hospice* OR‘‘supportive care’’)

AND(cultur* OR intercultural OR cross-cultural OR transcultural OR ethnic*OR migrant* OR minorit* OR diversityOR Muslim* OR Jew* OR Christian*OR Sikh* OR Buddh* OR Hindu* ORIndia* OR Pakistan* OR black ORwhite OR Caribbean* OR Africa* ORBangladesh* OR Irish OR British ORChinese OR Asian*)a

European Journal of Palliative Care1994e2010; International Journalof Palliative Nursing 1996e2010;Palliative Medicine 1987e2010;Journal of Palliative Care 1985e2010;Diversity in Health and Social Care2004e2008 (Diversity in Healthand Care 2008e2010);Omega 1970e2010; Mortality 1996e2010; Medical AnthropologyVolume 21 2002e2010

aThe official classifications for ethnicity and religious affiliation used by the U.K. Office of National Statistics and the words ‘‘cultur*, intercultural,cross-cultural, transcultural, ethnic*, migrant*, minorit*, and diversity’’ were chosen to retrieve articles concerning cultural competence/sensitiv-ity/humility and minority ethnic groups.

Vol. 43 No. 2 February 2012 263Primary Research on Minority Ethnic Groups and EoL Care From the U.K.

(FP7).32 PRISMA is an integrated program con-sisting of eight work packages that aim to coordi-nate research priorities and practice about EoLcareacrossEuropeandAfrica.32PRISMAincorpo-rated a work package on the influence of cultureon EoL care.32

Search StrategyTwelve electronic databases were searched

using the search terms in Table 1, whereas theNational Health Service Ethnicity andHealth Li-brary database was searched using the terms‘‘palliative’’ and ‘‘endof life.’’ In addition, the ref-erence lists of retrieved articles and the archivesof key journals (selected if they contained a highnumber of relevant articles or were medical,social science, death, and/or palliative care spe-cific) were searched (Table 1). Publications byauthors of included articles were searched viaauthors’ web pages (when available) and theWebofKnowledge ‘‘author search’’ facility. In ad-dition, as part of the PRISMA project, a networkof experts in cultural issues in EoL care was setup. Over 150 experts were asked to recommendliterature, including unpublished and grayliterature.

Inclusion CriteriaStudies that concerned minority ethnic

groups and EoL care from anywhere within the

U.K. were included. Only original studies wereincluded. No relevant foreign language studieswere identified.

Screening and Data ExtractionArticles were managed in Endnote X2. Titles

and abstracts were initially assessed by onereviewer (N. E.) to eliminate those not relatedto EoL care. All remaining titles and abstractswere then assessed for relevance in regularteammeetings (minimumof three participants).When there was insufficient information to de-cide on inclusion, the full text was retrieved andappraised. Data were extracted from full textcopies of articles (Tables 2 and3) byone reviewer(N. E.) and checked by another (M. G.).

AnalysisAssessment of Methodological Quality. Each studywas evaluated for methodological quality. Stud-ies were graded separately by two reviewers andthen compared. Differences were discussed inteam meetings (minimum of three people)and resolved by consensus. The grading schemeused was developed by Hawker et al.33 to assessthequality of studies carriedout usingheteroge-neous approaches. Ten areas (title and abstract;introduction and aims; method and data; sam-pling; data analysis; ethics; bias; results; transfer-ability or generalizability; and implications and

Table 2Studies That Met the Inclusion Criteria

Author(s), Year,Reference Aim Study Design Quality Score Location Participants Main Findings

Ackroyd (2003)42 To determine the effect ofa bilingual health careworker (BLHW) on care.

Quantitative(retrospectivereview of patientrecords).

30 Bradford, U.K. Patients, n¼ 47(47 minority ethnicpatients out of 571patients).

The BLHW was involved in41% of all referrals fromminority ethnic groups.

Bowlinget al. (2010)43

To examine fears aboutdying in an‘‘ethnically diverse’’ anda ‘‘homogeneous’’population sample.

Quantitative(structured interviews).

34 U.K. General public, n¼ 989(400 participants inthe ‘‘ethnicallydiverse’’ groupand 589 in the‘‘homogeneous’’group).

Participants from theethnically diverse samplewere more likely to score‘‘extreme fears aboutdying’’ and to have lowerquality of life ‘‘death anddying’’ scores for themeasures used. Therewere, however,differences betweenminority ethnic groups.

Chattooet al. (2002)14

To explore the needs andexperiences ofSouth Asian and whitepatients withadvanced cancer andcarers.

Qualitative (interviews). n/a(report)

Bradford, Leeds,and Leicester,U.K.

Patients (n¼ 54) andcarers (n¼ 41).

South Asians used manyaspects of EoL careservices, although daycare activities and mixedgender environmentswere seen asinappropriate. Therewere more differenceswithin ethnic groupsthan between them.

Clarke andFinlay (1991)44

To provide an account ofdifficulties encounteredin caring for a dyingKorean woman.

Qualitative (case study). 23 Cardiff, Wales,U.K.

Case study of a femaleKorean patient, n¼ 1.

Autonomy, communication,and the role of the familywere identified as issuesof concern.

Diver (2003)45 To assess staff perceptionsof multicultural careprovision and explorethe barriers andfacilitatorsto culturally sensitivecare.

Qualitative (semistructuredinterviews).

37 A universityhospital, centralEngland, U.K.

HCPs, n¼ 5 (nurses). Facilitators of multiculturalcare included: training;experience; the use ofculturally specificresources; and effectiveteam communication.Barriers included issueswith interpretation andracism.

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Diver et al.(2003)46

To assess patients’ culture-specific palliative careneeds.


37 A universityhospital, centralEngland, U.K.

Patients, n¼ 4. Patients expressed basichuman needs ratherthan culture-specificones. The theme ofacculturation, wherebypatients ‘‘fit in’’ with thedominant culture, waspredominant.

Dunckleyet al. (2003)47

To explore views ontranslation of outcomemeasures.


28 U.K. HCPs, n¼ 10(researchers, ‘‘servicepractitioners’’ andmanagers).

Translations overcamecommunication barriersand minimized the needfor family members tointerpret. Challengesincluded: illiteracy andthe need for culturalequivalence andsensitivity to context.

Faull et al.(2004)48

To explore experiences ofworking with diverseethnic groups.

Qualitative (focus groups). n/a(conferenceabstract)

Midlands, U.K. HCPs, n¼ 102. Professional anguish andlack of confidence indealing with those fromculturally differentbackgrounds wereidentified. Training wasfound to increaseknowledge, but notperceived performanceor evaluatedperformance.

Fountain(1999)49

To examine the use ofpalliative care services byminority ethnic groups.

Quantitative (retrospectivereview of patientrecords).

28 Derby, U.K. Patients, n¼ 15(15 minority ethnicpatients out of 1025patients).

Minority ethnic patientswere more likely to bereferred as outpatients.Minority ethnic patientswere equally likely to diein the hospice, hospital,or at home. Whitepatients were more likelyto die in hospital.

Fraser et al.(2010)50

To describe thecharacteristics ofchildren dischargedto palliative care fromBritish pediatric intensivecare units.


34 U.K. Patients, n¼ 68,882(6458 classified asSouth Asian on thebasis of the patient’sname).

South Asian children wereless likely to bedischarged to a hospiceand more likely toreceive further care in ahospital.

(Continued)

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Gunaratnam(1997)51

To critique the constructionof minority ethniccommunities’ needs interms of cultural andreligious needs (the ‘‘factfile’’ approach).

Qualitative (focus groups). n/a(bookchapter)

A hospice,London, U.K.

HCPs, n¼ 32(eight focus groupsof hospice staff).

‘‘Fact files’’ were said to:provide culturalexplanations forinequalities; ignorepower differentials; andreassure professionalsthat increasedknowledge could meetpatients’ needs. Inpractice, ‘‘fact files’’ werefound to be inadequate.

Gunaratnam(2001)52

To explore themulticultural provision ofhospice food.

Qualitative (semistructuredinterviews and focusgroups).

25 A hospice, U.K. HCPs (n¼ 28, nurses)and patients (n¼ 22).

Multicultural foodprovision was found tobe based upon‘‘objectified and reifiednotions of ethnicity andculture,’’ which couldlead to stereotyping. Thecomplexities of patients’food choices were lost incategorization.Inequalities can beheightened as problemsare ‘‘ethnicized.’’

Gunaratnam(2001)53

To use the concept of‘‘dilemma’’ to examineand theorize aspects ofantidiscriminatorypractice in a hospicesetting.

Qualitative (focus groups). 36 A hospice, U.K. HCPs, n¼ 28 (14 focusgroups of nurses,doctors, social workers,and members of thechaplaincy team).

HCPs identified‘‘dilemmas’’ regardingantidiscriminatorypractice and thechallenging of racism.The recognition ofdilemmas may enable amore flexible approachto antidiscriminatorypolicies and practice.

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Gunaratnam(2007)54

To explore the relevance ofcultural competencyapproaches in everydaycare.

Qualitative (groupsemistructuredinterviews).

30 London, Berkshire,Hertfordshire,Nottingham, andLeicester, U.K.

Ge eral public (n¼ 33,inority ethnicders) and HCPs¼ 56, nurses).

Nurses often could notrecall the details ofpatients’ backgrounds,suggesting that culturalinformation is not alwaysremembered or appliedin practice. Nursesreported following ‘‘gutinstincts’’ in care ratherthan culturally specificknowledge.

Gunaratnam(2008)55

To discuss the care of‘‘minority ethnic elders,’’examine how they arediscussed, and highlightgaps between conceptualmodels of culturalcompetency and practice.

Qualitative (focus groupinterviews).

30 London, Berkshire,Hertfordshire,Nottingham, andLeicester, U.K.

H s n¼ 56,ealth and socialre professionals).

HCPs were enthusiasticabout culturalknowledge, althoughidentified its limitations.Professionals couldretreat ‘‘behind atechnique’’ whenconfronted with complexsituations. In contrast,moments of‘‘professionalvulnerability’’ enabled‘‘morally charged’’ care.

Gunaratnam(2008)56

To critically examinecultural competencyapproaches.

Qualitative (focusgroup interviews).

32 U.K. Ge eral public (n¼ 33,inority ethnic elders)d HCPs (n¼ 57,urses, social workers,hysicians, and otherospice employees).

Cultural competencymodels are said to bebased on flawedculturalist assumptions,which frame minorityethnic groups’ needs inculturalist terms. HCPsare warned against theroutinization of care forpeople from minorityethnic groups andadvised to remainemotionally engaged andaccessible.

Haworthet al. (1997)57

To examine theinterpreting service atAiredale Trust.

Qualitative/quantitative(semistructuredinterviews).

n/a(conferenceabstract)

Airedale, U.K. H s, n¼ 21nterpreters).

The most experiencedinterpreters were theleast available.Interpreters had variousdegrees of training andexperience.Interpretation by familymembers was recognizedas suboptimal.

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nmel(n

CP(hca

nmannph

CP(i

Table 2Continued


Higginson andKoffman(2003)58

To compare attitudes totimeliness of death andeuthanasia betweenmembers of blackCaribbean and whitecommunities.

Quantitative (structuredinterviews).

35 London, U.K. Patient proxies, n¼ 100(50 black Caribbeanand 50 white carers).

Black patients had higherawareness of impendingdeath. Perceivedtimeliness of death andattitudes towardeuthanasia were similarin both groups. Therewas no relation betweenpatient and family viewon timeliness of death.

Hill and Penso(1995)59

To identify and explain lowuptake of hospice andspecialist palliative careservices by minorityethnic groups.

Quantitative/qualitative(quantitativeestimation of needfor services and HCPquestionnairesand interviews).

29 Brent, Newham,N. Birmingham,U.K.

HCPs, n¼ 40 (GPsanswering thequestionnaire. Nosample size informationfor interviews).

Cultural, institutional,epidemiological, andsocial barriers to theaccess and uptake ofservices by minorityethnic groups wereidentified.

Hughes, et al.(2005)60

To assess the culturalacceptability andappropriatenessof an EoL surveytranslated into Bengali.

Qualitative (discussiongroups).

37 East London, U.K. Patient proxies (n¼ 26,carers)/HCPs (n¼ 6,health and social careprofessionals).

Participants supported thetranslation of thequestionnaire. However,attention was said to beneeded regarding:vocabulary; sharedmeanings; culturalequivalence; and theways peopleconceptualize health,illness, death and dying.

Iqbal et al.(1995)12

To examine serviceprovision and its use byminority ethnic groups.

Qualitative/quantitative(semistructuredinterviews).

n/a(bookchapter)

Leicester, U.K. Patients and carers,n¼ 39.

Patients and carers desiredbetter explanations andmore time with GPs.Carers were moreknowledgeable aboutservices than patients(because of betterEnglish). Almost half ofpatients with specialdietary needs felt anattempt was made tomeet them. The need forsupport services atdiagnosis was identified.

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Jack et al.(2001)61

To investigate the role ofthe Macmillan EthnicMinorities LiaisonOfficer in the BradfordCommunity PalliativeTeam.

Quantitative/qualitative(retrospective reviewof patient records andcase studies).

27 Bradford, U.K. Pa ents, n¼ 46 (46inority ethnicatients out of 2038ferrals).

The Liaison Officerprovided supportregarding: information;culture and religion;gender; benefits; andbereavement support.Difficulties included theassumption that theofficer had a health carebackground and therole’s emotionaldemands.

Karim et al.(2000)62

To examine doctors’referrals and theirattitudes to theappropriateness ofpalliative care servicesfor minority ethnicgroups.

Quantitative/qualitative(retrospective reviewof patient recordsand semistructuredinterviews).

33 Birmingham, U.K. H Ps, n¼ 27 (GPs andospital consultants).

There was anunderutilization of daycare and inpatienthospice services byminority ethnic groups,but a higher rate ofreferral to home-careservices, which HCPsperceived as moreappropriate.

Koffman andHigginson(2001)11

To compare the satisfactionof carers of blackCaribbean and whitepatients with primary andacute care settings.

Qualitative/quantitative(structured interviewswith open questions).

32 London, U.K. Pa ent proxies, n¼ 1000 black Caribbeannd 50 white carers).

Carers of black patientsreported lowersatisfaction with servicesin all settings;particularly primary care,but less so for specialistpalliative care nurses(although few blackpatients had accessedsuch nurses).


To compare blackCaribbeans’ and whites’experience of copingwith terminal illness.


n/a(shortreport)

London, U.K. Pa ent proxies, n¼ 1000 black Caribbeannd 50 white carers).

Black patients were morereligious and consideredtheir religion a source ofhelp during illness.Carers of black patientswere found to attendchurch more regularly,and were more likely toconsider faith a help andbenefit from a visit toa religious leader.

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timpre

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ti(5a

ti(5a

Table 2Continued



To compare needs andproblems of carers ofblack Caribbean andwhite patients.



Carers of black patientswere more likely to befemale and younger than55 years. More carers ofwhite patients soughtGPs’ advice about healthproblems caused by care.The perceived‘‘restrictiveness’’ ofcaring was greateramong the carers ofblack patients, whichmay be caused by thelarger number of childcarers.


To understand place ofdeath preferences andcompare with the actualplace of death forfirst-generation blackCaribbean and whitepatients.

Qualitative/quantitative(structured interviewswith open questions).


More black Caribbean thanwhite patients expresseda place of deathpreference. Mostpatients died at homeand similar proportionsof black and whitepatients who wanted todie at home did so. Morecarers of black patientsbelieved the patient hadbeen given sufficientchoice about place ofdeath.

Koffmanet al. (2005)65

To compare the outcomesof bereavement amongcarers of Caribbean andwhite patients.

Quantitative(questionnaire).


More black carers reportedfinancial problems(although there was littledifference in financialresources). More blackthan white respondentsreported depression andanxiety, or other healthproblems. Higherpsychological morbiditywas found among carersof black Caribbeans. Themean intensity of griefwas similar.

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To explore awareness ofpalliative care services,and the factorsinfluencing awareness.

Qualitative/quantitative(structured interviewswith open-endedquestions).

34 London, U.K. Patients, n¼ 252. Awareness of services waslow among minorityethnic patients and theleast affluent. The mostfrequent source ofinformation was‘‘personal experience.’’No information wasreceived throughprimary care or socialservices. Females with ahigh socioeconomicstatus were more likely tounderstand palliativecare terms.


To examine issues ofvulnerability in cancerand palliative careresearch.


36 London, U.K. Patients, n¼ 45(26 black Caribbeanand 19 white patients).

Five domains ofvulnerability wereidentified(communicativevulnerability,institutionalvulnerability, deferentialvulnerability, medicalvulnerability, and socialvulnerability) for bothethnic groups. BlackCaribbeans, however,were more likely to be‘‘socially vulnerable.’’

Owens andRandhawa(2004)7

To understand how serviceproviders construct ideasof cultural difference,how these relate tophilosophies of palliativecare, and how culturaldiversity is dealt with,particularly in regard tohome care.


27 Luton, U.K. HCPs, n¼ 10 (nurses,community liaisonpersonnel, andrepresentatives ofnonstatutoryorganizations).

Tensions were identifiedbetween philosophiesand models of palliativecare (practiced in thehome-care setting) andthe principles of culturalcompetence. Staff haddifficulties delivering‘‘patient-centered’’ carewhen communicationwas a problem.

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Payneet al. (2008)68

To investigate the beliefs ofolder Chinese about therelationship betweencancer and food.

Qualitative (focus groupsand semistructuredinterviews).

37 Sheffield andManchester, U.K.

General public, n¼ 92(46 elderly Chineseparticipated in sevenfocus groups, anda further 46participated insemistructuredinterviews).

Concerns about the lack ofChinese food and thepoor quality/unsuitability of Westernfoods provided inhospitals were identified.Few participantsexpected preferences tobe catered to. Familymembers were expectedto source and preparefoods as an expression ofcare.

Randhawaand Owens(2004)69

To explore the meaning ofcancer and perceptionsof cancer services amongthree South Asiangroups.

Qualitative (focus groupsand semistructuredinterviews).

33 Luton, U.K. HCPs (n¼ 10) andgeneral public(n¼ 48).

Information and awarenessregarding cancer wasfound to be limited.Cancer was stigmatizedand seen as an incurabledisease. Participantsexpressed preferencesfor information to bemade available viacommunity networks.

Randhawaet al. (2003)70

To explore the role ofcommunication inculturally competentservice delivery.


35 Luton, U.K. HCPs (n¼ 10), patientsand carers (n¼ 12).

Services were, mostly,valued and seen aseffective. The mainissues were the need toraise awareness and toimprove communicationbetween patients andservice providers.

Rees (1986)71 To investigate ‘‘immigrants’’use of one hospice.

Quantitative (retrospectivereview of patient records,a survey of currentpatients and staffrecollections).

29 St. Mary’s Hospice,Birmingham, U.K.

Patients, n¼ 74 (74minority ethnicpatients out of 1460patients).

Immigrants were less likelyto be referred, but morelikely to be admittedonce referred, thanmembers of the‘‘indigenous’’population.

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Richardsonet al. (2006)72

To explore the experiencesof cancer HCPs workingwith minority ethnicgroups.

Qualitative (focus groups). 30 London,Birmingham,and Manchester,U.K.

H Ps, n¼ 28ostly nurses).

Difficulties were identifiedconcerning:communication;interpretation services;using family members tointerpret; the provisionof culturally sensitivecare; and avoidance ofstereotyping.

Seymouret al. (2007)73

To compare the views andexperiences of EoL carebetween white andChinese older people.

Qualitative (focus groups). 34 Sheffield andManchester, U.K.

G eral public,¼ 169 (77 whited 92 Chinese olderults).

White elders perceivedhospices in idealizedterms, whereas Chineseelders regarded them asrepositories of‘‘inauspicious’’ care.Chinese elders preferredhospital care. Place ofdeath preferences wererelated to concernsabout the demands onthe family for bothgroups.

Silcockset al. (2001)74

To compare use of palliativecare services by Asian andnon-Asian cancerpatients over a seven-yearperiod.



Leicestershire, U.K. Pa ents, n¼ 13636 Asian patientsut of 18,999atients).

Asian patients with cancerwere half as likely to diein a hospice as non-Asianpatients (unrelated toage, sex, deprivation, ordifferent types ofcancer).

Simmonds(2001)75

To identify groups whohave not used services,identify needs and ensurethat the consultationprocess and decisionmaking is representativeof the community.

Qualitative/quantitative(semistructuredinterviews, focus groupsand questionnaires).


St. Catherine’sHospice,Crawley, U.K.

H Ps, n¼ 12emistructuredterviews. Noformation regardinge sample size for thecus groups).

Barriers to service useidentified included: lackof information and lowawareness of services;informal and formalfactors affecting access;religious and culturalissues; changing familystructure and roles;identity issues; and overtand covert racism.

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Somerville(2007)76

To develop a theoryexplaining how palliativecare nurses care forpeople from diversebackgrounds.


33 N. London, U.K. HCPs, n¼ 10(community careand hospice nurses).

Nurses tried to assesspatients’ individualneeds. Awareness raisingwas identified asa priority. Problemsincluded patientsrejecting symptomcontrol and space andprivacy issues.Communication couldbe hindered by languageand cultural barriers andthe use of interpreters.

Somerville(2001)77

To investigate theexperiences ofBangladeshi informalcarers caring for a dyingrelative.


38 London, U.K. Carers, n¼ 7. Specific problemsincluded: poorcommunication;isolation; home caremotivated by duty; lackof disclosure to femalepatients (facilitated bypoor English); females’carer role; interpreterissues; and the desire todie at home, or even inBangladesh.

Spruyt (1999)78 To describe Bangladeshipatients’ and carers’experiences of palliativecare.


33 London, U.K. Patient proxies,n¼ 18 (carers).

Problems included:communication issues;poor English; use offamily to interpret;opposition to disclosure;poor symptom control;and financial difficulties.Repatriation of corpseswas reported.

274

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setal.

Webb (2001)15 To identify barriers toimproving access and todisseminate the resultsto service users.

Qualitative/quantitative(focus groups,semistructuredinterviews, and postalquestionnaires).


Warwickshire, U.K. Pa ents, carers,nd HCPs (noformation regardingmple size).

Barriers included: lack ofinformation; negativeperceptions of services;poor communication;stereotyping of patients;culturally or religiouslyinappropriate services;limitations in training;inflexibility of services;poor ethnic monitoring;and the neglect ofnonmalignant diseases.

Worth et al.(2009)79

To examine theexperiences of SouthAsian Sikh and Muslimpatients with life- limitingillness and of theirfamilies, andto explore accessdifficulties.

Qualitative (multiplein-depth interviews).

37 CentralScotland, U.K.

Pa ents (n¼ 25), carers¼ 18) and HCPs¼ 20).

Those with nonmalignantillnesses did not receiveappropriate palliativecare or management oflong-term conditions.Recent immigrants,those with poor English,or those with noadvocate were at highrisk of inadequate care.Barriers to accessincluded: discrimination;limited awareness ofhospices; and difficultiesdiscussing death.

Young et al.(2000)80

To increase the accessibilityand acceptability ofpalliative services byminority ethnic groups.

Quantitative/qualitative(questionnaires andsemistructuredinterviews).


Warwickshire, U.K. Pa ents and HCPso details aboutmple sizes).

Individuals’ responses wereconsistent in all regardsapart from theavailability ofinterpreters. Communityleaders were unable toidentify service users,and patientsrecommended by HCP‘‘were commonly notinvolved in a distinctcommunity in anyorganized way.’’ Trainingwas said to be so generalthat it was of little value.

HCP¼ health care provider; EoL¼ end of life; GPs¼ general practitioners.

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aryResearch

onMinority

Ethn

icGrou

psan

dEoL

Care

Fromthe

U.K.

tiainsa

ti(n(n

ti(nsa

Table 3Types of Subjects Studied and the Methods Used

SubjectQuali-tative

Quanti-tative

Qualitativeand

Quantitative Totala

Carers 4 0 2 6Patient proxies 2 4 2 8Patients 6 5 5 16Health care

professionals16 0 6 22

General public 5 1 0 6

Totala 33 10 15 58

aAs some studies involved multiple subject groups, the totals forsubject groups covered and the types of methods used do not cor-respond with the number of studies included.


usefulness) were awarded grades ranging from1 (very poor) to 4 (good),33 providing a maxi-mum score of 40. However, no studies were ex-cluded on the basis of quality, as there is noagreement on the role of quality criteria, howthey should be applied, or how quality shouldbe assessed.34,35

Identification of Key Themes. As qualitative,quantitative, and mixed method studies wereincluded in the review, a meta-analysis of studyfindings was not appropriate. Rather, an inter-pretative approach was taken in which keythemes were identified for analysis followingthe principles of constant comparison.36e41 In-terpretative syntheses aim to develop conceptsand theories from a range of sources and canintegrate both quantitative and qualitativeevidence.39,40

The findings from each study were coded,categorized, and summarized. Codes and cate-gories were iteratively compared and contrasted,and cross-cutting themes were identified, whichwere reduced to a number of key themes.40,41 Fi-nally, anarrative synthesis offindings concerningthe key themes was conducted, paying particularattention to commonalities and discordance be-tween studies.40,41

ResultsAfter removing duplicates, a total of 5882 ci-

tations were screened. Of these, 5720 were dis-carded after reviewing the title and abstract, asthey did not fulfill the inclusion criteria.Thirty-six articles were not available for fulltext assessment (none of these were original

studies). The full text of 126 articles was exam-ined in more detail. On closer examination, 13articles were found not to meet the inclusioncriteria and a further 68 were not original stud-ies (13 reviews and 55 other articles). No rele-vant unpublished articles were identified. Atotal of 45 original studies met inclusion crite-ria (Fig. 1, Table 2).All studies were conducted in England apart

fromone fromWales44 andone fromScotland79

(Table 2). Rees71 carried out the first study of‘‘immigrant’’ (European, black Caribbean,and Asian immigrants) use of palliative care ser-vices in 1986. The next study, however, was notpublisheduntil 1991, and a total of seven studieswere published in the 1990s. The vast majorityof studies (n¼ 37) were published between2000 and 2010, following the publication in1999 of the MacPherson report.3

Just over half of the studies used qualitativemethods (n¼ 24). For the remaining studies,mixed (n¼ 11) and quantitative (n¼ 10)methods were used. Health care professionals(HCPs) were the most frequent study subjects,followed by patients, patient proxies, andcarers. The least studied group was the generalpublic (Table 3). Themost frequent typeof sam-pling was representative (n¼ 22) (retrospectivereviews of patient records, stratified randomsampling, or complete sampling of a specifiedgroup), closely followed by nonrepresentative(n¼ 20) (purposive, convenience samples, orsnowball sampling). Three studies gave no in-formation concerning sampling method. Themajority of the studies (n¼ 31) included all ter-minal conditions, whereas just under a third(n¼ 14) specifically focused on cancer.

Methodological Quality of the StudiesThirty-four studies were graded for methodo-

logical rigor. The remaining 10 studies werepub-lished as book chapters (n¼ 2), reports (n¼ 2),and conference abstracts (n¼ 6) (conferenceabstracts identified through the search strategywere included; however, all conference abstractswere not specifically searched). These formatsprevented grading. The scores awarded rangedfrom 23 to 39 out of 40. The mean score was32.6 (median 33). According to the gradingscheme, the studies were, on average, of a goodstandard.81 The areas of reporting that scoredthe lowest marks were (in descending order):bias; ethics; abstract and title; data analysis; and

Fig. 1. Article selection process.


introduction and aims. Only nine studies explic-itly discussed issues of bias, and a further eightdescribed efforts to minimize bias (through theuse of interviewers from the same ethnic groupor gender) without explaining how these mea-sures reduce bias. Most articles restricted discus-sion of ethics to a statement that ethics approvalhadbeenobtained. Somearticlesdidnothaveanabstract, or the abstract lacked information, es-pecially regarding methods, sample sizes, anddata analysis. In addition, a number of articlesfailed to describe the process of data analysis,and others provided very little background infor-mation and/or only a general aim without spe-cific objectives.

Key Themes and FindingsSeven themes were identified from the stud-

ies’ findings: age structure; inequality by

disease group; referrals; caregivers; place ofcare and death; awareness of services and com-munication; and cultural competency.

Age Structure. The first U.K. study of minorityethnic groups and EoL care examined ‘‘immi-grant’’ use of one hospice.71 Immigrants’ hospiceuse was found to be four times lower than that ofthe ‘‘indigenous’’ population.71 They were, how-ever, more likely to be admitted once referred tothe hospice.71 The low rates of referrals were as-cribed to immigrants’ younger population agestructure.71 Similar explanations for low serviceuse were given in subsequent studies of minorityethnic patients.49,59 However, one such study,which examined minority ethnic groups’ use ofpalliative care services in Derby, showed that, byadjustingminority ethnic user figures for popula-tion age structure, age structure only accounted


for a quarter of the variation between expecteduse and actual use.49 Indeed, the authors stressedthe importance of other contributing factors.49

Furthermore, a retrospective review of cancerdeaths revealed that Asian patients with cancerwere half as likely to die in a hospice as non-Asian patients,74 a result that was independentof differences in patient age, sex, socioeconomicstatus, or type of cancer.74

Inequality by Disease Group. Palliative care ser-vices often focus on cancer care49,59,69 and thishas implications for equality of service provision.Articles focusing on minority ethnic groupscollectively49,59 and Asian populations specifi-cally42,69 highlighted these populations’ rela-tively low rates of cancer and higher rates ofnonmalignant diseases (such as diabetes, heartdisease, hypertension, and stroke). Despite lowrates of cancer, individual suffering and serviceneed were frequently emphasized.14,44,68e70,77,78

Referrals. Two studies explored physicians’ re-ferrals of minority ethnic groups to palliativecare services. An examination of referrals toone U.K. hospice found a disproportionatelylow referral rate to day care and inpatient palli-ative care services.62 This was not the case, how-ever, forhome-care services, a finding attributedto physicians’ belief that families from minorityethnic groups prefer to provide care at home,have the resources to do so, and families whodo not will face stigma.62 Moreover, a study ofchildrendischarged topalliative care frompedi-atric intensive care units found that SouthAsianchildren were less likely to be discharged toa hospice and more likely to receive furthercare in a hospital.50 The study’s authors, how-ever, made no attempt to explain this finding.

Caregivers. One study of Bangladeshi patientscriticized physicians’ assumption that informalhome care is widely available in Asian families,who prefer to ‘‘look after their own.’’77 In con-trast, this study highlighted that Bangladeshi pa-tients did not always have family support andthat family involvement was not always suppor-tive.77 Several factors undermine the assumptionthat Asian families will provide home care:a trend for smaller families; the decreasing im-portance of extended families; and an increasein women working outside the home.77 Anotherstudy highlighted the different support needs of

carers linked to personal characteristics.13 Infor-mal home carers of black Caribbean patientswere more likely to be female and youngerthan carers of white patients.13 They were alsomore likely to perceive caring as ‘‘restrictive’’and to report financial worries, although finan-cial resources and the number of activities sacri-ficed for caring were similar in both groups.13

This difference was attributed to the greater pro-portionof carersofblackCaribbeanpatientswhowere patients’ children rather than partners.13

Place of Care and Death. Two studies high-lighted culturally determined differences inpreferred place of death.73,78 Elderly Chineseexpressed a preference for hospital care, whichensured that a sense of ‘‘hope’’ of recoverycould be maintained.73 In contrast, Banglade-shi patients were found to prefer repatriationto Bangladesh, and many patients were re-ported to fulfill this wish.78 Although distinctpreferences were recognized and choice sur-rounding place of death was identified as a pri-ority, both articles emphasized that preferredplace of death is dependent on multiple fac-tors, not ethnicity alone, and should never beassumed.73,78

Awareness of Services and Communication. Ascarcity of information in appropriate lan-guages and formats was frequently identifiedas a cause of low awareness and negative per-ceptions of palliative care services.11,15,66,69,75

A comparison of satisfaction with services be-tween carers of black Caribbean and white pa-tients found that fewer black respondents feltthey had received sufficient information aboutservices.11 Another study reported that peoplefrom minority ethnic groups were less likely tounderstand some palliative care terms andtheir most frequent source of informationabout services was from personal experience.66

Furthermore, an exploration of the meaningof cancer and perceptions of cancer servicesamong South Asians revealed that patientsgained little information about services fromHCPs and most information was gained fromother sources.69

A further problem, described in three stud-ies, involved the translation of terms such as‘‘palliative,’’ ‘‘hospice,’’ and ‘‘patient burden’’;in some cases, a lack of cultural equivalents


or negative connotations of such equivalentswas identified.47,60,62

Three studies addressed issues concerningcommunication of pain and symptom control.Two studies described HCPs’ difficulties in ex-plaining how to take prescribed drugs andcheck symptoms, with sign language and dia-grams used when no one was available to inter-pret.70,76 One study described problems withthe diagnosis of anxiety and depression, whichcould be described as physical symptoms be-cause of the stigmatization of mental healthproblems in some communities.47

Using bilingual health care staff, liaisonofficers,healthadvocates, etc.was frequently sug-gested to improve communication.14,42,61,69,72,78

Three studies, however, revealed that communi-cation problems caused by language barrierswere not entirely resolved by the use of inter-preters.45,57,76 A study of Asian interpretersfound that many lacked experience workingwith people with terminal illnesses and hadlimited knowledge of palliative care services.57

Palliative care nurses reported problems regard-ing interpreter availability and continuity of use,difficulties in knowing when to book them, lim-ited resources to fund them, and negative effectson patient-staff rapport.76 Another study re-vealed palliative care staff members’ uncertaintyabout who should debrief interpreters regardingsensitive issues.45

Four studies described how, owing to limitedresources for interpretation services, membersof patients’ families were asked to interpretinformation.7,76e78 Three of these studies, twoof Bangladeshi populations77,78 and anotherof palliative care nurses,76 described this prac-tice to be suboptimal as conversations could in-volve sensitive personal information and familymembers could shield patients from full knowl-edge of their condition.76e78 Indeed, a numberof studies reported nondisclosure of informa-tion and attempts to persuade doctors tocollude in nondisclosure.59,62,77 In addition,one study (of Bangladeshi carers) reported inci-dents of patients’ children skipping school orwork to be available to interpret.78 In contrast,HCPs in another study acknowledged that cul-tural competency models discourage the useof family members as interpreters. However,they also recognized that family members weresometimes the best people to sensitively com-municate information to their relatives.7

Several studies highlighted that speakingabout death is considered to destroy hope andhasten death in a number of different minorityethnic communities (Bangladeshi,78 SouthAsian,14 and Chinese73), hindering the opendiscussion of EoL decisions. A study of SouthAsian and white patients with advanced cancer,however, found that instead of the stereotypicalmodel of nondisclosure in South Asian families,there was tension between disclosure and themaintenance of hope. Furthermore, the ageand gender of the patient were major determi-nants in disclosure.14 The need to understandthe role of the family regarding disclosure-related issues was identified as necessary for ser-vice improvement.62,78 Fear and anxiety ofdying also can hamper communication. A studythat examined fear of dying in patients olderthan65 years revealed that participants frommi-nority ethnic groups were more likely to scorehighly on a subscale concerning fears aboutdeath and dying than those not from minorityethnic groups.43

Inequalities in power, inherent in thephysician-patient encounter, are exacerbated bycommunication difficulties if the patient speakspoor English or is from a different cultural back-ground. One study revealed that South Asian pa-tients held feelings of ‘‘partial or compromisedcitizenship,’’ which they felt weakened their en-titlement to services.14 Moreover, South Asianpatients were told less about their conditionand treatment.14 Another study revealed thatmi-nority ethnic elders (South Asian, black African,black Caribbean, Portuguese, and Chinese) em-phasized their cultural identity more frequentlywhen recounting vulnerable moments (e.g., di-agnosis and EoL care) in which they had feltthey had beenmistreated because of a lack of re-spect or recognition for their ethnicity or gen-der.56 Mistrust, caused by past experiences ofracism or perceived racist attitudes among staff,was frequently said to severely hinder communi-cation.14,45,59,64,79 Furthermore, a study that ex-amined issues of vulnerability in cancer andpalliative care research emphasized that blackCaribbean patients were more ‘‘socially vulnera-ble’’ than white patients because of being mem-bers of ‘‘an undervalued social group.’’67

Cultural Competency. The need for ‘‘culturalcompetency’’ training was frequently empha-sized59,62,64,69,78 and three studies described


a lack of training as a concern for HCPs.45,64,72

One study, however, revealed that HCPs wereunaware of available training.79Moreover, threestudies found that HCPs did not desire detailedinformation on cultural practices45,72,76 andtraining programs that emphasized specific cul-tural information were frequently criticized aspotentially creating stereotypes.45,51,52,54,55,68,72

Moreover, a study of minority ethnic elders(South Asian, black African, black Caribbean,Portuguese, and Chinese) argued that the cul-turalist assumptions on which cultural compe-tency training is based frame minority ethnicgroups’ needs in cultural terms, whereas whitepatients needs are more frequently understoodas resulting from individual preferences.56

One study highlighted the ambiguity sur-rounding the relationship between culturalknowledge and culturally responsive care;nurses rarely remembered patients’ culturalbackground, suggesting that cultural knowl-edge is not always recalled in practice.54

Across studies, there was no consensus regard-ing the definition of cultural competency7,54,78

and little information regarding what shouldbe included in training programs. Suggestionsincluded: training in the use of interpreters, ad-vocates, and bilingual health care workers;14,77,78

ethnicmonitoring;14 the explorationof attitudesand assumptions concerning minority ethnicgroups;72 awareness of one’s own cultural back-ground;76 and greater reflexivity in practice.7,14

In contrast, one study recommended ‘‘profes-sional vulnerability’’ as an alternative approachto cultural competency.55 Moments of profes-sional vulnerability and connection with minor-ity ethnic patients, unrelated to the use ofculturally specific knowledge, were said to ‘‘en-ableamorally chargedformofcare.’’55 Inadiffer-ent study, the same author warned that culturalcompetencyapproachesmay serve to ‘‘routinize’’encounters between HCPs and members of mi-nority ethnic groups and impede engagementon an emotional level.56 Only two studies exam-ined the impact of cultural competency training.One study found that training increased knowl-edge but not perceived or evaluated per-formance,48 whereas another revealed thattraining was so general that it was of little value.80

No studieswere found that lookedat the effect oftraining on patient outcomes.

Two studies highlighted the difficulties inproviding care commensurate with the

principles of palliative care to patients from dif-ferent cultural backgrounds. One revealed thata number of palliative care professionals hadquestionedwhether some aspects of holistic pal-liative care were appropriate for SouthAsian pa-tients or had been directly questioned in regardto their appropriateness by South Asian serviceusers.7 Another study highlighted the difficul-ties nurses experienced providing symptomcontrol for patients who reject pain relief medi-cation.76 Furthermore, both studies empha-sized the problems health care practitionersexperienced in providing individualized,patient-centered care to patients with whomcommunication is difficult or for whom othersmake decisions.7,76 HCPs’ attempts to meetthe needs of patients from diverse backgroundsthrough reflexive, individualized care was, how-ever, highlighted.7,76 Questioning whether pal-liative care can be practiced with people fromother backgrounds also was warned against be-cause of the risk of ‘‘reifying culture and repli-cating inequalities.’’7 Authors frequentlycautioned that culturally specific care could di-vert attention away from the individual,45,46,76,77

and a number of studies hypothesized that trulyindividualized care should naturallymeet all pa-tient needs, including cultural ones.45,46,76,77

Five studies touched on ‘‘culturally appropri-ate’’ food provision, highlighting the tensionbetween the provision of ‘‘ethnic food’’ and mi-nority ethnic patients’ agency in their foodchoices.12,14,46,52,68 The studies’ authors warnedthat the provision of ethnic food could lead tostereotyping and fail to take into account per-sonal tastes or the effects of illness on food pref-erences.14,46,52,68 Nevertheless, a study ofminority ethnic palliative care service users inLeicester revealed that over half of users whodid have special dietary requirements felt thatno attempt had been made to accommodatetheir needs.12

DiscussionThis review identified 45 original studies

from the U.K. concerning minority ethnicgroups and EoL care, a far higher numberthan the number of studies covering the samesubject matter identified in previousreviews.9,10,17,21,23e30,82 This result underlinesthe importance of the systematic review process


for both quantitative and qualitative literatureand the growing importance of research on mi-nority ethnic groups and EoL care. The inclu-sion of both quantitative and qualitativestudies provided insights into epidemiological,demographic, institutional, social, and culturalreasons for low service use and substandardquality of services provided for members of mi-nority ethnic groups in the U.K. Although thegrades awarded indicated that studies were, onaverage, of a good standard, the grading of pa-pers for methodological quality highlightedthe need for better reporting, especially regard-ing bias and ethics.

The themes that emerged from the synthesisof the studies’ findings (age structure; inequal-ity by disease group; referrals; caregivers; placeof care and death; awareness of services andcommunication; and cultural competency) re-flect the multiple and interrelated factors thatcontribute to low service use and substandardquality of services. Although studies typicallyfocused on only one factor, the importanceof multiple factors was frequently recognized.

The most frequent theme throughout the lit-erature was ‘‘awareness of services and commu-nication.’’ The dominance of communication,particularly linguistic difficulties and differ-ences in communicationnorms,maybe a conse-quence of the choice of study locations (mostlyLondon, West Yorkshire, Leicester, and theMidlands) and the frequent use of nonrepre-sentative sampling of subjects from minorityethnic groups (via community groups, snowballsampling, etc.), which may lead to the over-representation of people from what have beendescribed as ‘‘ethnically marked places and eth-nic communities,’’83 areas of first-generationsettlement, and places in which language andcultural maintenance aremore likely. Althoughthe experiences of these groups are important,they may not be representative of the entire mi-nority ethnic population.

The findings of this review both complementand exceed those of previous reviews that cov-ered similar subject matter.21,28,29 Redmanet al.,29 focusing on cancer and palliative care,identified the lack of timely referrals for pa-tients from minority ethnic groups as the mostimportant issue regarding palliative care ser-vices.29 The key theme highlighted by Jones’s21

systematic review of minority ethnic groups andEoL care services, was the tension between

patient autonomy and the rights of the family.21

Both of these issues have been identified in thisreview. However, these factors were not privi-legedover other factors; rather, theywere recog-nized as one of a number of influencescontributing to low service use and low qualityof services. Elkan et al.28 gavemore equal weightto the multiple problems faced by minority eth-nic service users, including communication andawareness problems, a lack of cultural compe-tency from providers, and culturally deter-mined preferences in EoL care.28

The most common approaches designed toincrease service use and improve quality de-scribed in the literature (such as the use of in-terpreters and multicultural food provision)can be viewed as reactive and piecemeal ratherthan proactive and holistic. Moreover, despitefrequent recommendations of cultural compe-tency training, few studies evaluated the im-pact of such training programs. No commonconsensus was found as to what exactly ismeant by cultural competency and whatshould be included in training programs, al-though a small number of studies made rec-ommendations such as the exploration ofHCPs’ attitudes, assumptions and own culturalperspectives, and more reflexive practice.

Implications for Future ResearchThe review revealed a paucity of research re-

garding patient and caregiver experiences andopinions. HCPs were, by far, the most frequentsubjects of research and few studies actually at-tempted to explore how patients and carersfeel about their own cultural needs.

In addition, no articles were identified con-cerning Britain’s white minority ethnic groups.This was not caused by a deficiency in thesearch strategy (one article concerning IrishTravelers84 was identified but was excluded asit came from the Republic of Ireland), butrather by a genuine lack of research lookingat the U.K.’s white minority ethnic groups.

Furthermore, with growing recognition ofthe need to offer culturally competent EoLcare, it is essential to clarify what ismeant by cul-tural competency and to develop appropriatetraining courses, founded on a clear under-standing of the concept. A better conceptualgrasp also will lead to well-designed evaluationsof these programs. Research into the impact of

Table 4Recommendations for Health Care Professionals and Policymakers

1. End-of-life (EoL) care for patients with nonmalignant diseasesHigh-quality EoL care for noncancer patients is essential for the equitable provision of EoL care for minority ethnic groups.

2. Improved awareness of servicesCommunity engagement to increase the understanding and awareness of services and to better understand the needs of allsectors of the community.

3. Improved communicationInformation regarding cultural differences in communication and the use of interpreters should be incorporated into allcommunication skills training.

4. An awareness of difference, but a rejection of stereotypesRecognition that cultural factors influence all patients’ EoL care preferences; however, assumptions should never be madebased on cultural background alone.

5. Clarification of ‘‘cultural competency’’ and sensitivity training programsTraining in care that is sensitive to cultural difference should be embedded in a clear understanding of the conceptual basis ofsuch care, aim to challenge stereotypes, and counter the belief that services are unsuitable for minority ethnic groups.

6. Holistic approachRecognition that multiple, interacting factors create barriers to access of EoL care. Improved service use and quality of care,therefore, requires holistic, organization-wide approaches.


cultural competency training on both practi-tioners and service users is recommended.

Recommendations for HCPs and PolicymakersThe synthesis of diverse and disparate stud-

ies concerning minority ethnic groups andEoL care from the U.K. informs a number ofkey recommendations for HCPs and policy-makers (Table 4). The majority of studies iden-tified in this review were carried out after thepublication of the Macpherson Report aboutthe public inquiry into the mishandling ofthe London Metropolitan Police investigationinto the death of a young black man. The no-table increase in research after the report’spublication highlights the importance ofsuch inquiries and their potential for influenc-ing both research and practice. However, thesestudies reveal that 10 years after institutionalracism in public services was first highlighted,there is still a need for further efforts to im-prove access to and the use of EoL care ser-vices and the quality of service provision forminority ethnic groups; future research mustevaluate these efforts critically.

LimitationsThis review included studies of minority eth-

nic groups (either minority ethnic groups asa collective, or of specific ethnic groups suchas South Asian or black Caribbean) and EoLcare. Variations in the terminology used to de-scribe the minority ethnic population (or partsof it), combined with differences in samplingframes, complicate direct comparison acrossstudies. This does not, however, detract from

the cross-cutting themes identified from thestudies and differences in study populationshave been acknowledged.Studies were graded using a recognized grad-

ing scheme for the comparison of quantitative,qualitative, and mixed method studies. Thisscheme, however, can only assess the reportingof the study’s methodological quality ratherthan the study itself. It is recognized that becauseof constraints, such as word limits, some authorssacrificed methodological detail to devote morespace to developing theory and, therefore, re-ceived low scores (principally the articles byGunaratnam,51e56 which have been describedas ‘‘significant and critical’’7). In addition, theformat of 10 of the studies prevented gradingof methodological quality; these were, however,reviewed because they provided unique insights.

ConclusionThis review, the first to systematically identify

and critically appraise studies concerningminor-ity ethnic groups and EoL care exclusively fromthe U.K., highlights the multiple and intercon-nected factors that contribute to low service useand substandard quality of services received byminority ethnic groups. The synthesis of diverseand disparate studies informs a number of keyrecommendations for HCPs and policymakers.Tackling these epidemiological, demographic,institutional, social, and cultural factors will re-quire a systematic and organization-wide ap-proach rather than the current piecemeal andreactive interventions.


Disclosures and AcknowledgmentsPRISMA is funded by the European Commis-

sion’s Seventh Framework Programme (con-tract number: Health-F2-2008-201655) with theoverall aim to coordinate high-quality interna-tional research into EoL cancer care. PRISMAaims to provide evidence and guidance on bestpractice to ensure that research can measureand improve outcomes for patients and families.PRISMA activities aim to reflect the preferencesand cultural diversities of citizens, the clinicalpriorities of clinicians, and appropriately mea-suremultidimensional outcomes across settingswhere EoL care is delivered. Principal Investiga-tor: Richard Harding; Scientific Director: IreneJ Higginson. In recognition of the collaborativenature of PRISMA, the authors thank the follow-ing PRISMAmembers: Gwenda Albers, BarbaraAntunes, Ana Barros Pinto, Claudia Bausewein,Dorothee Bechinger-English, Hamid Benalia,Lucy Bradley, Lucas Ceulemans, Barbara A.Daveson, Luc Deliens, No€el Derycke, Martinede Vlieger, Let Dillen, Julia Downing, MichaelEchteld, Dagny Faksv�agHaugen, Lindsay Flood,Nancy Gikaara, Barbara Gomes, Sue Hall, SteinKaasa, Pedro Lopes Ferreira, Johan Menten,Natalia Monteiro Calanzani, Fliss Murtagh,Bregje Onwuteaka-Philipsen, Roeline Pasman,Francesca Pettenati, Tony Powell, Miel Ribbe,Katrin Sigurdardottir, Steffen Simon, FrancoToscani, Bart van den Eynden, Jenny van derSteen, Paul Vanden Berghe, and Trudie vanIersel.

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