Self reports in research with non-English speakers
BMJ 2003; 327 doi: https://doi.org/10.1136/bmj.327.7411.352 (Published 14 August 2003) Cite this as: BMJ 2003;327:352
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My sympathies go out to all researchers in health working with ethnic
minorities, especially with African minorities in Britain. Having lived
in Britain as a married student with children in the late eighties for
nearly five years; and recently without my family for a year as a
Commonwealth fellow; I have came to the conclusion that one of the reasons
most African populations avoided using the health system was for fear of
being misunderstood. The many languages available in my country alone-
over thirty-three distinct languages and more than twice as many dialects-
make it impossible to have a "Ghanaian" language and that is why English
is the official language spoken in Ghana. The brand of English spoken may
at times be very different in meaning to the English in Britain and
migrants from Ghana have mixed literacy abilities.
Indeed, I have a hard time in Ghana trying to translate health terms in
English into my own mother tongue!
The African population in Britain is not as big as the Asian one and may
yet stand to benefit when translation issues are sorted out with the
latter.
Competing interests:
None declared
Competing interests: No competing interests
EDITOR — Hunt and Bhopal [1] highlight the limitations in the current
status of translations of self-report measures for ethnic minority groups.
Far too often researchers aim for direct translations of health status
measures along with simple statistical measures that developers attempt to
assure potential users that their translation is in fact a “valid” and
reliable self-report measure.
Existing translations of the more commonly used health status
measures in South Asian languages are few. Whilst a small number have been
developed and tested within UK minority groups [2-4 for example], others
are translated in the original country [5, 6] (i.e. India, Pakistan,
Bangladesh) but are yet to be tested among UK resident ethnic groups. To
push forward the ethnic recruitment in clinical trials / studies where
health status measures are used, researchers must be aware of existing
translations from other countries and willing to pursue some attainment of
equivalence and acceptance of such translations within UK minority groups,
so that ethnic accrual becomes less of an issue of language.
In a recent and timely paper [7], the authors review a large body of
translations of the more commonly used health status measures. Their
results confirm our own findings (for ethnic minority language
translations) that local (or target) conceptions of health are far too
often neglected when adapting measures into non-English languages.
Our own research is going some way in identifying self-report
measures translated and adapted for use in the commonly spoken UK ethnic
minority languages (for example Urdu, Punjabi, Gujarati, Hindi and
Chinese) and establishing whether such translations are reliable measures
for assessing self-reported health amongst ethnic minorities in the UK.
REFERENCES
[1] Hunt S, Bhopal R. Self report in research with non-English speakers.
BMJ 2003; 327: 352—353 (16 August).
[2] Bhui K, Bhugra D, Goldberg D. Cross-cultural validity of the
Amritsar Depression Inventory and the General Health Questionnaire amongst
English and Punjabi primary care attenders. Soc Psychiatry Psychiatr
Epidemiol 2000; 35: 248—254.
[3] Jacob KS, Bhugra D, Mann AH. The validation of the 12-item
General Health Questionnaire among ethnic Indian women living in the
United Kingdom. Psychol Med 1997; 27: 1215—1217.
[4] Clifford C, Day A, Cox J, Werret J. A cross-cultural analysis of
the use of the Edinburgh Postnatal Depression Scale (EPDS) in health
visiting practice. J Adv Nurs 1999; 30(3): 655—664.
[5] Mumford DB, Tareen IAK, Bajwa MAZ, Bhatti MR, Karim R. The
translation and evaluation of an Urdu version of the Hospital Anxiety and
Depression Scale. Acta Psychiatr Scand 1990; 83: 81—85.
[6] Kabir ZN, Herlitz A. The Bangla adaptation of mini-mental state
examination (BAMSE): An instrument to assess cognitive function in
illiterate and literate individuals. Int J Geriatr Psychiatry 2000; 15:
441—450.
[7] Bowden A, Fox-Rushby J. A systematic and critical review of the
process of translation and adaptation of generic health-related quality of
life measures in Africa, Asia, Eastern Europe, the Middle East, South
America. Soc Sci Med 2003; 57: 1289—1306.
Competing interests:
MRDJ directs a research centre dedicated to examining the impact of, and response to ethnic diversity in health care
Competing interests: No competing interests
CancerBACUP welcomes the increased attention being given to the needs
of ethnically and culturally diverse users of health services. Sonja
Hunt’s editorial on the assessment of health and healthcare needs of
ethnic minority populations resonates with CancerBACUP’s own experience in
the cancer field.
Although there is no national data available, anecdotally health
professionals report an extremely low uptake of cancer services by black
and ethnic minority communities.
Lack of English language skills and cultural differences serve as
obstacles to more equal access. To respond to the currently often unmet
information and support needs of black and minority ethnic cancer patients
and their relatives, CancerBACUP has launched ‘Cancer In Your Language’:
12 additional national freephone helplines, specifically for speakers of
the country’s most common ethnic minority languages: Arabic, Bengali,
Cantonese, French, Greek, Gujerati, Hindi, Polish, Punjabi, Turkish, Urdu
and Vietnamese. These 12 languages alone cover 60-65 percent of British
ethnic minority communities. Callers to these lines get straight through
to an interpreter for their language who will link in a CancerBACUP nurse
able to answer any question on any cancer.
In addition to the 12 additional national freephone helplines, the
Cancer In Your Language service offers information and support to people
affected by cancer in more than 100 languages. People whose first
language is not English can contact the specialist cancer information
nurses on Freephone 0808 800 1234, who will then link in a relevant
interpreter.
The ‘Cancer In Your Language’ Service offers confidential advice and
information on any cancer, an awareness of the information needs of
different communities, and emotional support.
Jill Morrell, Policy and Public Affairs Manager CancerBACUP
Notes:
1) Numbers for the 12 additional freephone lines are:
Arabic 0808 800 0130
Bengali 0808 800 0131
Cantonese 0808 800 0132
French 0808 800 0133
Greek 0808 800 0134
Gujarati 0808 800 0135
Hindi 0808 800 0136
Polish 0808 800 0137
Punjabi 0808 800 0138
Turkish 0808 800 0139
Urdu 0808 800 0140
Vietnamese 0808 800 0141
2) The interpreting service is being funded by the New Opportunities
Fund and is part of CancerBACUP’s overall strategy to reach out to ethnic
minority communities. The New Opportunities Fund is a Lottery
Distributor created to award grants to education, health and environment
projects throughout the UK.
3) CancerBACUP’s work with black and ethnic minority communities also
receives support from the Madhvani family, in the name of Muljibhai
Prabhudas Madhvani.
4) CancerBACUP is the only national charity that specialises in
providing information on all types of cancer.
Competing interests:
None declared
Competing interests: No competing interests
Hunt and Bhopal warn that ‘Unless requested to do so translators may
not regard it as part of their task to comment on the salience or
sensitive nature of the questions asked.’ Certainly I have seen idiocies
in this area, such as a health department nutrition information sheet in
Chinese retaining the English words ‘salami’ and olives’ as examples of
high-salt foods. However, there is also the complementary danger that if
issues of cultural appropriateness are not discussed explicitly with the
translator, he or she may act as self-appointed or unconscious cultural
interpreter (and gatekeeper), reflecting his or her own embarrassment or
ignorance rather than a genuine cultural issue or linguistic
untranslatability. Here in Sydney a Chinese epidemiologist translating a
women’s sexual health questionnaire alleged that there was no equivalent
in Chinese for ‘sexually attracted to women’. She giggled that the literal
translation would be incomprehensible to respondents. Not so, argued a
Chinese member of our staff, confidently writing out the characters. On
the basis of a low non-response rate, the question proved successful,
whereas other questions on specific (hetero)sexual practices were often
left blank.
We should not just send off copy to translating services without
discussion with the translator. Checking text by back-translation is
necessary but not sufficient.
Competing interests:
None declared
Competing interests: No competing interests
Developing tools for self reports by non-English speakers
Editor
We are writing to support the assertion by Hunt and Bhopal, that “issues
of cross language data collection should be seen as a challenge and not as
an obstacle, a stimulus to innovative thought and the development of new
techniques of investigation.”
We recognise that there can be particular difficulties in developing
methods for use with people who speak languages with no established
written format or who have limited ability to read in any language. We
translated a validated questionnaire of satisfaction with maternity
services, the Survey of Women’s Experiences of Maternity Care (Lamping
& Rowe, 1996), to produce a reliable and valid version for use with
women from the Bangladeshi community in the UK (Duff et al., 01).
The women in our sample spoke Sylheti and were unable to read or
speak sufficient English or Bengali to enable us to develop a
questionnaire in either of those languages. We decided, therefore, to
explore whether we could translate the existing questionnaire into
phonetic Sylheti, represented by Roman script. Firstly, in line with the
WHOQOL approach (Bowden & Fox-Rushby, 2003, WHOQOL, 1993), focus
groups, in-depth interviews and iterative methods were used to culturally
adapt and translate the questionnaire. The phonetic translation was
reviewed by the team at STAR, an organisation devising a font specifically
for Sylheti. Finally, the questionnaire was field tested and quantitative
psychometric methods used to evaluate its acceptability, reliability and
validity. The 121 – item questionnaire was found to be acceptable to
participating women and it showed good internal consistency (Cronbach’s
alphas 0.76-0.91), stability (test-retest reliability 0.72-0.84) and
construct validity (e.g. able to detect group differences).
Although there is further work to be done to understand the
equivalence of the original and translated questionnaires, we hope our
findings will encourage others to look wider than standard translation
techniques and to use linguistic techniques with qualitative and
quantitative methods to develop instruments for communities that might
otherwise be excluded from surveys.
References
Bowden, A., & Fox-Rushby K (2003). A systematic and critical review of
the process of translation and adaptation of generic health-related
quality of life measures in Africa, Asia, Eastern Europe, the Middle East,
South America.
Social Science & Medicine, 57 (7), 1289-1306.
Duff, L.A., Lamping, D.L., & Ahmed., L.B. (2001). Evaluating
satisfaction with maternity care in women from minority ethnic
communities: development and validation of a Sylheti questionnaire.
International Journal of Quality in Health Care, 13 (3), 215-230.
Lamping, D.L., & Rowe, P. (1996). User manual for purchasers and
providers: Survey of Women’s Experiences of Maternity Services (Short
Form). London: London School of Hygiene & Tropical Medicine.
WHOQOL Group. (1993). Study protocol for the world health
organization project to develop a quality of life assessment instrument
(WHOQOL). Quality of Life Research, 2, 153-159.
STAR http://www.sylheti.org.uk/
Competing interests:
None declared
Competing interests: No competing interests