South Asians comprise around 3% of the UK’s population, according to the National Statistic’s 2001 census (Figure 1). Most Asians living in the UK come from India, Bangladesh, Pakistan and East Africa.
Diabetes is a growing problem. Estimates suggest that there are currently about 120 million people worldwide with diabetes and that this number is set to double by 2010 (Diabetes UK, 2000). Koppiker and Rao (2003) state that countries with the largest number of people with diabetes in 1995 were anticipated to remain the same by the year 2025, although numbers of people with diabetes would increase; India (19 million to 57 million), China (16 million to 38 million) and the US (14 million to 22 million).
Diabetes has particularly increased among south Asians in the UK, of whom 20% over the age of 40 years have type 2 diabetes (Barnett, 1999). The prevalence of diabetes is 15.2% in Asian communities in comparison with the white population in which the prevalence is only 3.8% (Burden, 2001). The prevalence of diabetes varies within the south Asian community. Shaikh et al (2001) suggest that diabetes affects over 20% of Muslims. Patel et al (2001) state that diabetes affects over 15.2% of Hindus.
A population survey carried out with 4395 Asian residents, by Simmons et al (1992) in Coventry, highlighed that 94% of the population were Punjabi Sikhs, Punjabi Hindus, Gujarati Muslims, Gujarati Hindus and Pakistani Muslims. Many of the participants will be from the Indian subcontinent around the world, which has a huge diversity of people with 14 major languages with approximately 100 different dialects.
Many barriers prevent healthcare professionals from delivering effective education and a good quality of care to the UK’s ethnic minority population from south Asia. The term ‘Asian’ suggests a single cohesive group, but in reality the communities are from different countries and social classes, with different languages, religions and traditions (Marwa, 2000). Diversity in language, religion, cultural norms and expectations prevents effective communication, which creates misunderstanding between the majority and minorities (Ahmed and Atkins, 1996) Burden (1998) suggests that the prevalence of diabetes is four times higher in Asians than in Caucasians and argues:
“…that many health professionals tend to group all Asian patients together and generalise their care.”
It has been estimated that in the UK there are over 2 million people who speak very little or no English, and the majority of these people are Asians (Mello, 1992). This can pose problems for healthcare professionals in the delivery of effective healthcare services in order to meet the needs of the patient. Asians who have migrated to the UK vary considerably in their literacy skills; a sizeable minority are unable to read either their own language or English (Karseas and Hopkins, 1987).
Educational literature that is written in different Asian languages will not meet the educational needs of the South Asian community that are illiterate. Cultural and communication difficulties make this group more resistant to healthcare implementation strategies. Many healthcare professionals who care for Asian people with diabetes find it difficult to educate their patients with diabetes on how to accept and manage their condition. According to Vass (2003), patients will do well with compliance and will be more satisfied with their care if they fully understand their illness.
Chandola (2001) highlighted that Pakistani and Bangladeshi respondents had the poorest self-rated health. The poorer health of south Asians compared to the white population may be due to factors related to occupation, social class, material living conditions and local area deprivation. The British Heart Foundation (2001) has highlighted the following points:
- South Asian men smoke more than the general population, particularly Bangladeshi men.
- As a community, south Asians eat the least fruit and vegetables of all ethnic groups.
- South Asian men and women are less likely to participate in physical activity than the general population.
- South Asian men and women are more likely than the general population to have central obesity (when fat is centred around the waist), placing an extra strain on the body and heart.
- South Asian men and women are much more likely to have low levels of protective high density lipoprotein cholesterol.
Educating and supporting patients in managing their daily life with diabetes are important goals of diabetes care. These goals demand not only good medical knowledge but also good communication skills in the members of the diabetes care team and in people with diabetes. This can be difficult when there are language, cultural and social barriers. Education is an essential component of management, as people with diabetes need to develop the skills to enable them to become experts in self-care (BDA, 1997). The Audit Commission Report (2000) in the Testing times survey highlighted the gaps in diabetes care throughout the UK and identified two important points:
- Patient education was inadequate in half of the hospitals visited.
- Ethnic minority patients were twice as likely to report gaps in their understanding of care.
A Department of Heath survey (2001) highlighted that diabetes services do not adequately meet the needs of ethnic minority populations. Early studies showed that Asians know less about their diabetes than Caucasians (Hawthorne, 1990). A recent study by Raleigh and Clifford (2002) highlighted that:
“ethnic minority patients have a lower level of knowledge and access to information about diabetes and have a less satisfactory interface with services”.
Reducing inequalities in healthcare and outcomes is a priority in the new NHS agenda but this goal is not being met. Patient education is paramount to enhance the quality of patients’ health and the ultimate goal for providing education in any format is to get the message across (Web, 1997; Conlon, 2001; Campbell, 2001; Jones, 2001; DCCT, 1994; UKPDS, 1998; DoH, 2000).
Several studies have highlighted the need for culturally sensitive diabetes education which is adapted to the health beliefs and needs of ethnic communities to gain diabetes control and compliance (Needham, 2002; Marwa, 2000; Chowdhury et al, 2000; Greenhalgh et al, 1998). According to Dixit (2003) meeting the needs of the population requires sensitivity to the many traditions, cultures and religious practices that exist in the UK today, especially in diabetes related services and care. To ignore a person’s culture is to ignore them and their identity, argues Papadopoulos et al (1998). A focus group in the west Midlands was formed in 1998 called Focus group for Asians with diabetes (FAD). Their mission statement is to:
“improve the knowledge, understanding and management of diabetes in the Indo-Asian population, using multimedia resources, therefore promoting an improved quality of life.”
The group informally evaluated current educational material for the Asian community and their families:
- There was a significant lack of appropriate educational resources for British Asian people with diabetes and their families.
- Educational material produced was not culturally appropriate or sensitive.
- The language level used was inappropriate, too clinical and did not reflect the everyday language spoken by the majority of the Asian community in the UK.
- The literature was not always available in all of the major Asian languages (Punjabi, Hindi, Gujarati, Urdu, Bengali).
- Not enough information was available in different formats (visual or audio) for people unable to read or write their own mother tongue.
- Leaflets were often either photocopied, hand written and lacked entertainment value.
Aims of FAD
The aims of the group are:
- To provide an advisory and consultative role to improve the knowledge, understanding and management of diabetes in the South Asian population.
- To provide the most appropriate, effective and culturally sensitive educational material to reinforce and support healthcare professionals when delivering diabetes education.
The FAD group members have similarities. They are all Asian and work in the field of diabetes. But what makes them unique and successful in their initiatives is the fact that they all bring different cultural, religious and language skills as well as a wealth of knowledge and experience of working with Asian people with diabetes and their families. FAD has worked with LifeScan and Diabetes UK in an advisory capacity to produce some excellent materials, including multilingual videos and supportive literature.
The group have been responsible for writing the script of two videos: Dispelling the myths of diabetes within the Asian community (Punjabi version) and Understanding and managing diabetes with the Asian community (in English and five Asian languages as well as awaiting translation into Mirpuri).
FAD were also present during filming and editing of the videos (see Figure 2). These have been well received by patients, their carers and healthcare professionals in the west Midlands. All members are in positions where they can empower other healthcare professionals working in the field of diabetes.
Projects can take years to complete and many hurdles need to be overcome. The FAD group members are all DSNs who have heavy workloads and family commitments. There is a need for dedication and committment; much of the work is done outside of work time. In order to receive funding, credibility and worth needed to be approved before companies will sponsor the projects. Initiatives to date can be seen in Figure 3.
Informal evaluation of the educational material produced in association with FAD has been positive. Appropriate language was used and the videos were culturally sensitive and realistic; patients were able to identify with the characters. The educational material is used during one to one consultations, group sessions and in waiting rooms. It is also used in health promotion events to raise awareness of diabetes within the south Asian community. These educational resources allow healthcare professionals an alternative approach when helping south Asian patients with diabetes to accept and manage their diabetes. Communication between healthcare professionals and Asian people with diabetes and their families is facilitated. The group will continue to work together in an advisory and consultative role improving the outlook for the Asian community through the use of multieducational and culturally appropriate interventions. It is hoped that the NHS will recognise the effort that is needed to develop services which meet the needs of the South Asian community. These have to be properly established and funded in order to improve care.