Karen Lord is finding out

The UK government’s Cancer Strategy Review, issued in December 2007, aims to refocus cancer services in key areas. There is a need to remove the major ethnic inequalities, which still exist in cancer incidence, access to services and outcomes. The Strategy also stresses the need to improve psychological support to all cancer patients and their families and carers throughout the cancer journey.

Currently there is a largely incomplete understanding about how the United Kingdom’s population copes when diagnosed with cancer. We know that the way in which different groups of people respond to life-threatening illness is highly dependant on their cultural background, but there have been few studies in either British White or South Asian populations examining public beliefs about cancer.

Without this knowledge, the design of our cancer services, for example prevention, screening and treatment (both physical and psychological), remains imperfect. We risk perpetuating the present racial inequalities and inadequate psychological support.

Leicester as a good location

Researchers at the University of Leicester, supported by the research charity Hope Against Cancer, have recently launched a project to explore the ways in which people cope with a diagnosis of cancer in the ethnically diverse population of Leicester.

The city of Leicester provides an appropriate patient population to study since, by the next census in 2011, it is predicted that Leicester will be the first UK city to have a white minority population. The biggest minority population within the city of Leicester describe themselves as Indians, although of these approximately 45 per cent were born in Africa. The majority of the community originate from western India, speaking Hindi or Gujarati. More recently Muslims have migrated to Leicester, some from north-west India and others from Pakistan. The mean age of the immigrant population is relatively young with a consequently low incidence of cancer; however the incidence is likely to increase in the next decade. 

Ethnic differences in coping

The current research project builds on the findings of two local pilot studies. The first indicates definite differences in coping styles in British cancer patients according to ethnicity(1). It suggests that British Asian patients are more likely to disbelieve their diagnosis than British White patients (48 per cent British Asian; 31 per cent British White).

Denial was strongly associated with anxiety and depression. The study also revealed that Asian patients have a more fatalistic attitude towards being diagnosed with cancer than the White patient. These beliefs may have a detrimental effect on a patient’s ability to cope with the experience of cancer.

The second study, looking at the informational needs of both British White and Asian patients found that Asian patients, in contrast to White patients, would prefer to receive the cancer diagnosis from their GP rather than the hospital consultant (2). An exploration of the concept of trust may be influential in our understanding of these results.

Clearly the studies raise questions which require further investigation. Using a larger study group, are the results replicated? Using a longitudinal design, can we detect whether patients alter the way they cope over time? Do they use denial as a coping strategy less over time? Are there still differences between cultures?

To explore the concept of denial further, we seek to understand the beliefs patients hold about the causes and curability of cancer. Do beliefs differ between White and South Asian individuals? Does cancer mean different things in different cultures? We know, for example, that there is no similar word for cancer used in Gujarati.  

Distress and denial

Over the next two years, 200 White and the same number of Asian patients will be recruited into the study from the Leicestershire Cancer Centre. A cross section of potentially life-threatening cancer will be represented. Patients will be asked to complete five questionnaires soon after diagnosis. These include the Hospital Anxiety and Depression Scale, Mini-Mac, Distress Thermometer, Illness Perception Questionnaire and the Cancer Insight and Denial Questionnaire. Patients will be asked to repeat the process after three and nine months, to examine core concepts of distress and denial. We will ask them to describe the nature of their illness and where they place their trust when looking for professional support.

This study will generate a greater understanding of these concepts and so better inform the design of psychological support services for our increasingly diverse population. It will help us to focus and deliver information about cancer and its treatment in a culturally sensitive manner. 

References

(1) R Roy, R P Symonds, D M Kumar, K Ibrahim, A Mitchell, L Fallowfield (2005), The use of denial in an ethnically diverse British cancer population: a cross-sectional study, Br. J. Cancer April 25; 92(8):1393-7

(2) M Kumar, RP Symonds, S Sundar, K Ibrahim, BS Savelyich, E Miller(2004), Information needs of Asian and White British cancer patients and their families in Leicestershire: a cross-sectional survey, Br. J. Cancer, Apr 19; 90(8):1474-8

Karen W E Lord is a Nurse Researcher/Clinical Nurse Specialist at the Palliative Care Team, University Hospitals of Leicester