Theme 3: Navigation: Mobilising resources

minority ethnicity

4.2.3 Theme 3: Navigation: Mobilising resources

Our analysis suggests that navigation of services by people of minority ethnicity requires access to and deployment of a range of resources, including those of language and forms of support. Our synthesis is organised around the following themes generated by our analysis:

• Knowing where to go and what’s available.

• Social support as a resource.

• Practical resources.

• Language resources.

• Newness.

Knowing where to go and what’s available

As noted earlier in this report, negotiation of a route to find a point of entry to health services requires some knowledge of the services available. Our analysis suggests that lack of information can be a major problem for many people in minority ethnic communities and affect every stage of interactions with health services. Knowing how to use a service was identified in these papers as a first hurdle that many people in minority communities encountered, which in turn determined their decision to seek help (Rashid and Jagger, 1992; Gammell et al., 1993; Sharma et al., 1994; Bulman and McCourt, 1997; Naish et al., 1994; Chiu et al., 1999). Lindesay et al. (1997) found that even among longer established Gujarati elders living in Leicester, a much higher proportion had never heard of services that were inquired about compared with a similar white population. These services included district nurses (64 per cent of Gujaratis had not heard of them, compared with 18 per cent of whites); chiropody (78 per cent

Lack of basic information about the services available can compound problems for people whose first language is not English and for those not literate in their mother-tongue. We found evidence that lack of printed literature in minority languages, or in suitable formats for those who are illiterate, discourages people from seeking help and prevents them taking up appropriate services. Ahmad and Walker (1997) reported that 50 of the 84 people in their study supported the statement that language problems stop people knowing about, looking for and / or receiving services. Sharma et al. (1994), report that a lack of advice and information in minority languages deters non-English speaking women from seeking advice about infant care. These problems applied to seeking help in emergency situations, as well as seeking help for routine health issues (Nguyen-Van et al., 1995 - 96;

Sharma et al., 1994; Naish et al., 1994; Lindesay et al., 1997; Chan, 2000). For example, in an investigation of access to and use of out-of-hours services by Vietnamese respondents, Free et al. (1999), found that lack of awareness and lack of information prevented people from seeking help in an emergency. Lack of information and knowledge about the existence of services among people in some minority ethnic groups may be more widespread than is generally recognised

(Nguyen-Van et al., 1995 - 96; Karim, 1996; Li et al., 1999; Chan, 2000).

Social support as a resource

Social support refers to the perceived level of support that is available from others and the extent to which the availability of this resource affects their ability to seek help and / or their decision about seeking help. We analysed articles looking at the role of social support in help-seeking behaviour in minority ethnic communities.

Our analysis suggests that members of family, friends and community centres can offer a range of forms of support, including interpreting, advocacy, and help with transport, to enable people of minority

ethnicity to seek, negotiate and sustain access to medical care. People may rely heavily on informal social networks comprising friends and family (Littlewood and Elias, 2000; Nguyen-Van et al., 1995 - 96;

Bulman and McCourt, 1997; Allison et al., 2000) Some rely on the support of voluntary and statutory sectors such as community centres, social services and GPs (Gammell et al., 1993; Bhui et al., 2001;

Katbamna et al., 2002), and others use a combination of informal and formal support to enable them to seek help (Bhui et al., 2001;

Katbamna et al., 2002; Li et al., 1999; Chaturvedi and Ben-Shlomo, 1997). However, analysis of two papers suggests that people most adversely affected by the lack of social support are often those in the most vulnerable situations. Cole et al. (1995) and Gammell et al.

(1993) found that ethnic minority patients with mental health

For some minority groups, social support may have particularly important roles to play in negotiating language barriers in access to health care. Although informal networks can be an important source of support for people experiencing difficulties in seeking access to health care, evidence suggests that it is not always reliable, particularly for those needing support outside normal office hours (Free et al., 1999).

Studies suggest that relatives, including children, are often the only source of help available to overcome language and communication barriers (Gerrish et al., 2004). However, the assistance of a family member or child may be sought only as a last resort, because help from this quarter is not always seen as reliable and acceptable. Using children as interpreters during examination or when sensitive issues were being discussed is a particular problem, and it is not unusual for those unwilling to use their children in this way to miss their

appointments with health care professionals or to omit important information (Cohen et al., 1999; Rhodes et al., 2003).

Among many minority ethnic groups, the legitimisation of lay beliefs about ill health and the management of conditions with the help of family, and friends and religious organisations may influence help-seeking behaviour (Littlewood and Elias, 2000; Allison et al., 2000). It was evident in our analysis that the level of trust and faith invested in informal networks and lay advice influenced the decision to seek the help of health care professionals as lay advice was often used

extensively before consulting a doctor (Allison et al., 2000). This was demonstrated by Littlewood and Elias’s (2000) study of the narratives of African and African Caribbean women on delay in seeking help for breast cancer. This study found that African Caribbean women with breast cancer were more likely to seek and accept treatment for breast cancer if they felt that their behaviour would be approved by the church. It is also evident in some research that some forms of social networks can act as deterrents to help-seeking. Participants in Chew-Graham’s (2002) study of help-seeking among South Asian women in relation to psychological distress and self-harm found that a very efficient community grapevine could lead to gossip and

speculation about help-seeking that discouraged women from using services.

Practical resources

As we identified in our general meta-ethnography, the availability of practical resources operates to constrain people’s access to health care. We analysed papers that reported on specific practical problems affecting mi nority families (Arai and Farrow, 1995; Pahl and Vaile, 1988; Sharma et al., 1994; Burnett et al., 1999; Littlewood and Elias, 2000; Hawthorne, 1994; Carter and Bannon, 1997; Bannon 1992). A review paper by Hawthorne (1994) identifies a wide range of practic al

populations in seeking help. Many of these are related to issues of socio-economic deprivation, which may be particularly severe in some minority groups. Hawthorne suggests that people in minority groups may have limited access to cars and telephones, making it difficult to keep or rearrange appointments. Many South Asian people are self-employed and work long hours, making it difficult to fit around fixed appointment times during standard working hours. Some minority groups may go back to relatives – for example in the Indian subcontinent – for months at a time and be lost to follow-up or be unavailable when called for screening or other preventive services (Hoare et al., 1992).

Other practical resources or issues that affect help-seeking include access to private health insurance, housing or living arrangements;

information in minority languages and socio-economic position, particularly lack of employment (Arai and Farrow, 1995; Pahl and Vaile, 1988; Sharma et al., 1994; Burnett et al., 1999). Pahl and colleagues (1988), in a study of travellers, found that nomadic communities are particularly vulnerable to poor access. Carter and Bannon (1997), in a study of health services for pre-school children, reported that mothers whose first language was not English found journeys to clinics more difficult, perceived waiting times to be longer, and had larger families that made attendance more difficult. In some cases, the experiences of service users in minority ethnic communities suggest that the process of help seeking is complex and requires a variety of practical resources. Burnett et al. (1999) for instance, found that psychiatric patients who were unemployed were more likely to be referred directly to psychiatric care by police, whereas patients who had the support of their families were more likely to seek referral via their GP.

Language resources

Our analysis identified competence in English language as one of the most important facilitators to help-seeking. We analysed papers that examined the relationship between proficiency in English language and help-seeking behaviour in minority ethnic communities (Arai and Farrow, 1995; Gammell et al., 1993; Nguyen-Van et al., 1995 - 96;

Sharma et al., 1994; Karim et al., 2000; Bulman and McCourt, 1997;

Bowler, 1993; Naish et al., 1994; Lindesay et al., 1997; Li et al., 1999; Katbamna et al., 2002; Rashid and Jagger, 1992; Cooke et al., 2000; Chan, 2000; Chiu et al., 1999; Atkin et al., 1998; Tang and Cuninghame, 1994)

In almost all studies we analysed, an ability to speak English is seen as a vital resource for negotiating access to health care. Those who do not possess the necessary skills in English face numerous challenges seeking health care (Sharma et al., 1994; Bulman and McCourt, 1997). Some of the main problems identified for those who are

NCCSDO © 2005 144 illiterate in English included difficulties accessing information about health and health care services, and in ability to communicate with health professionals and engage in the decision- making (Katbamna et al., 2002; Li et al., 1999; Bowler, 1993). Most had little choice but to rely on official or unofficial interpreters, but these were often not easily accessible, appropriate or reliable (Chiu et al., 1999; Tang and Cuninghame, 1994; Bowler, 1993; Bulman and McCourt, 1997). An analysis cited by Hawthorne (1994) found that 16 - 39 per cent of the most simple questions were mistranslated; for example, terms were changed (madness for epilepsy; obesity for swelling) and some gynaecological words were not translated at all. Non-professional interpreters tended to speak for the patient instead of allowing them to find their own answers.

Anxiety about having to cope with language and communication difficulties operates as a powerful deterrent to seeking help. There is strong evidence to suggest that adequate provision of, and ease of access to, interpreting services is a key factor which influences help-seeking behaviour of people in minority ethnic communities (Bulman and McCourt, 1997; Naish et al., 1994; Sharma et al., 1994). Even after contact with health care services has been established, many minority ethnic people face barriers in negotiating access to health care (Chan, 2000; Bulman and McCourt, 1997).

Lack of appropriate and adequate interpreting services has a

disproportionate impact on the decisions of older people and women of child-bearing age to seek help (Bulman and McCourt, 1997; Naish et al., 1994; Sharma et al., 1994; Lindesay et al., 1997). Bulman and McCourt (1997) reported that there was a close relationship between Somali women’s negative encounters with maternity services and their access to interpreters. Women who did not have access to interpreters were particularly anxious about seeking help because they were unable to ask questions or describe their health problems. They also found it hard to get explanations, information and the advice they needed to explain their medical history.

Studies exploring the needs of Chinese and South Asian communities found that inability to speak English placed many service users in these communities at a particular disadvantage because they

encounter hurdles at every stage of negotiating access to health care, from making appointments and attending alone, to explaining their symptoms and understanding the medical terminology and advice offered by health professionals (Chan, 2000; Rashid and Jagger, 1992). Chan (2000) found that one of the main reasons given by Chinese women for their decision to delay attending their first antenatal appointment was the language barrier.

Newness

Our analysis suggests that recency of migration, or ‘newness’ should be distinguished from other aspects of ethnicity and may represent a

NCCSDO © 2005 145 particularly powerful form of deterrent to help-seeking. The problems that affect those newly arrived in the UK – especially those seeking asylum from conflict – are likely to be very distinct from those that affect longer-established minority populations. Asylum seekers and refugees may be especially at risk of poverty, social disintegration, and poor access to health care (Lynch and Cuninghame, 2000). Lynch and Cunninghame (2000) explain that refugees and asylum seekers, and those awaiting the outcome of an appeal, have free access to NHS services. However, asylum seekers are not automatically eligible for free NHS prescriptions, dental or optical care. Unless permanently registered with a GP, routine appointments for preventive services, including routine child health surveillance and immunisation, will not be sent. In Gammell et al.’s (1993) study of refugees and political asylum seekers, 93 per cent of respondents had not been given information about how to register with a GP, and 97 per cent lacked information about how to use hospital services:

‘I am not registered with a GP since I came to the UK because I don’t know how to register. I could not find any information.’

The amelioration of some barriers to health care over time is evident in Rashid and Jagger’s (1992) finding that only six per cent of their sample of Asian people (classified as people whose family originated in India, Pakistan, Bangladesh, or of Indian or Pakistani descent from East Africa) in Leicester reported difficulties in exp laining symptoms in English. Although this was significantly higher than the percentage of non-Asian people (0.9 per cent) reporting this difficulty, it represented a significant reduction over the 1983 figure, when 27 per cent of Leicester Asians could speak little or no English.

Summary: Navigation: Mobilising resources

For people of minority ethnicity, negotiating a point of entry to health services and sustaining engagement over time requires considerable work and

mobilisation of a daunting array of resources. Minority groups may lack knowledge of the existence of services and how to use them, sometimes because information about services may not be available in a format they can understand (because of language or literacy problems). Knowledge of specific conditions may be poor, and recognition of symptoms and help-seeking may therefore be adversely affected. As for people of all ethnicities, lay beliefs and membership of particular social networks can influence help-seeking

behaviour, and there may be delays in help-seeking for conditions perceived as stigmatising. Access to social support, as for all ethnicities, is important in help-seeking, and is particularly important to members of minority populations for help with interpreting. However, reluctance to use family members and children as interpreters can deter help-seeking. Some forms of social networks may also deter help-seeking for sensitive problems by creating grapevines of gossip. Recently migrated people may face particular difficulties.

4.2.4 Theme 4: Organisational issues in navigation

In the previous section we showed that organisational issues in negotiating health services create particular vulnerabilities for socio-economically disadvantaged people. Our analysis suggests that similar, and additional, risks exist for people of minority ethnicity. Our synthesis is organised around the following themes generated by our analysis of the evidence:

• Permeability of servic es.

• The ideal user and cultural dissonance.

• Provision of language and interpreting services.

• Turbulent and fragmented organisational contexts.

Permeability of services

Our earlier analysis suggests that the most striking feature of access to health care by people of minority ethnicity is the apparently relatively high use of general practice and relatively low use of specialist services. We suggest that one explanatio n is that services that are permeable to people of minority ethnicity because of their particular organisational features are likely to have higher use.

In our analysis of permeability of services for socio-economically disadvantage people, we highlighted non-attendance as a highly significant issue, suggesting that non-attendance points to low permeability. Low permeability is a feature of services that require high degrees of agreement on candidacy between users and providers, that impose qualifications on candidacy, and that require mobilisation of many resources. There is some evidence that attendance at

specialist services varies by ethnicity. George and Rubin (2003), in their systematic review of non-attendance in general practice, report that race is a predictor of non-attendance in some studies but not others. There does appear to be some very limited evidence of higher rates of non-attendance at specialist appointments among people of minority ethnicity. Gatrad (2000) reported that Asian patients did not attend for 50 per cent of new appointments and 50 per cent of follow-up visits compared with 32 per cent and 33 per cent for European patients, respectively, at paediatric outpatient clinics.

Permeability is a function, among other things, of people’s willingness to use services. As for all users and potential users, perceptions of quality of care and quality of interactions can have a major impact on minority people’s ability and willingness to seek further advice and information, and engage in the treatment process. Several studies that we analysed indicated that perceptions of quality, including failings of communication by health services, hindered or delayed use of services among ethnic minority groups (Naish et al., 1994; Allison et al., 2000; Katbamna et al., 2002; Chiu et al., 1999). Naish et al.

(1994) and Chui et al. (1999) reported that a lack of explanation

Misalignments between services and potential users are reflected in papers indicating people’s lack of confidence in their ability to gain access, and indicate low permeability (Free et al., 1999; Katbamna et al., 2002; Chew- Graham et al., 2002). In Chew-Graham’s (2002) study of psychological distress and self-harm in South Asian women, there was profound lack of trust in mainstream services. A study of musculo-skeletal pain in ethnic minority communities suggested that cultural differences in attitudes towards health care and lack of confidence in health care meant that ethnic minority respondents, particularly those with high-level disability who were living alone and working at home, were more likely to seek lay advice and resort to traditional remedies to manage their health problems themselves (Allison et al., 2000):

‘They are only going to say that I can’t do anything for you really. It would feel like I’m wasting his time really, complaining about the back it is not really anything you can see.’

Nguyen-Van et al. (1995 - 96) found that a majority of Vietnamese respondents were registered with a GP, but poor access to interpreting services and unsatisfactory interactions with the GP meant that the use of Chinese herbal medicine was generally widespread; 16 of 128 respondents (12.5 per cent) took traditional compounds by mouth and 30 (23.4 per cent) applied topical substances such as ointments, cream, and oils.

The ideal user and cultural dissonance

Our general synthesis identified complexity in health care service

In document Vulnerable groups and access to health care: a critical interpretive review (Page 140-158)