Role of the Nurse in HIV Prevention and Care

Published Date: 22 Jan 2018

INTRODUCTION

This brief considers role of the nurse in the HIV prevention and care in the black African community. The document considers empirical literature from academic, governmental, and other sources. It is argued that the available evidence is too scant to warrant conclusive inferences about the role of nurses in HIV care and management for this ethnic group. This is compounded by ambiguities about the role of nurses in promoting sexual health, and uncertainty about the appropriate criteria for evaluating their impact on the African community.

Black Africans in Britain

According to the Department of Health (2005b) approximately 480,000 people living in England (less than 1% of the population) have Sub-Saharan African heritage, by birth and /or descent. More than 75% live in the Greater London area, mostly in inner London Boroughs. Compared to the rest of the UK population, Africans tend to be younger, well educated (just 13% of Africans reported have no educational qualifications), more likely to be unemployed and living in rented (often overcrowded) accommodation. Asylum legislation has meant that a significant proportion of the population has questionable migration status in the UK. New arrivals in the UK, including asylum seekers, are offered a medical examination that may include a HIV test if this is requested, or the medical examiner judges that a test is necessary. The test result is not necessarily considered when an asylum application is processed.

Many Africans live in isolation, separated from friends and family back in Africa, (for asylum seekers), with no access to public funds, and struggling to adapt to a new culture (Millar & Murray, 1999). Many are struggling to learn English.

Sexuality is heavily influenced by traditional (tribal) beliefs, taboos, customs, religion, and spirituality. HIV is virtually a taboo subject. Thus, a sero-positive status has a significant effect on various aspects of a persons life, including problems dealing with the diagnosis, ambivalence about whether or not to test, gender issues (e.g. whether or not to breastfeed), and coming to terms with the possibility of death (e.g. implications for children, family) (Miller and Murray, 1999; Doyal & Anderson, 2005).

The prevalence of HIV infection is high in both the immigrant and British born/resident African populations. Asylum seekers and others with unsatisfactory immigration status have limited access to public funds, live in poverty, and generally avoid utilising public health services, until illness is at an advanced stage.

Black Women

There is considerable research on the plight of African women as distinct from men (e.g. Withell, 2000; Tabi & Frimpong, 2003). Much of this literature highlights aspects of their increased susceptibility, or predisposing factors or experiences. Motherhood is an extremely important goal for many African women, so that unprotected sex becomes a cultural necessity.

Doyal and Anderson (2004) document the devastating impact of HIV on the lives of African women living in Britain. Many women harbour serious concerns about the health of their offspring. There is a distinct reluctance to give birth to a sick (HIV-positive child). Many women have a 'vague' immigration status, whereby they may not be entitled to state benefits, have no work permit and/or rely on charities for subsistence.

The immigration issue is multidimensional. Many women live with a chronic fear of deportation, perhaps remaining in doors for days at a time, and/or refusing to open the door when the bell rings. Then there is the poor housing. Some put up with unsanitary and crumbling accommodation due to lack of funds and the awareness that housing conditions back home in Africa are much worse. Furthermore, some individuals become distressed or depressed because they are isolated from friends and family back home, and for a prolonged (and perhaps indefinite) period of time. Finally, many women may be unsure of their health care entitlements in the UK, and hence be unaware off and/or fail to utilise appropriate HIV care services.

Additionally, religious faith remains a stable and salient characteristic of Black African culture. In the face of adversity many women turn to religion for 'hope' and 'deliverance'. Doyal and Anderson (2004) quote one woman: "I have turned to God. I have really got to know more about God now. I know God exists... . God is in control. I know there is an afterlife here" (p.1736). The danger is that some women may seek therapeutic remedy from God, as a substitute for seeking medical care.

Epidemiology

According to Department of Health (2005a) figures provided by the Communicable Disease Surveillance Center (CDSC), up to 12,558 black Africans living in England by 2003 were HIV-positive. This figure was based records from HIV treatment clinics and care centers in England, and accounts for 36% of the total number of people in England living with HIV. In 2003 69% of heterosexual HIV-positive people (or 2624 individuals) were probably infected in sub-Saharan Africa. The majority of cases (65%) were female. In 2002 black Africans accounted for 70% of the total number of diagnosed HIV infections. Furthermore, “of the 15,726 heterosexual men and women seen for care in England, Wales, and Northern Ireland in 2003 for whom ethnicity was reported, 70% (11068) were black African, 19% (3009) were white and 4% (657) black Caribbean. Africans feature in all the main transmission routes for HIV…” (p.12) (see Figure 1). HIV positive Africans tend to be diagnosed much later in the course of the HIV disease, and show low uptake of clinical monitoring and antiretroviral treatments.

Focus: The North West of England

The North West HIV/AIDS Monitoring Unit (2005a, 2005b), based at the Center for Public Health at Liverpool John Moores University, regularly and comprehensively

Figure 1 Distribution of HIV infections (those seen for care) across ethnic groups in 2003

monitors HIV trends in Northwest of England. The surveys are supported by the Health Protection Agency and the Northwest Public Health Observatory, and cover three main regions: Cumbria and Lancashire, Cheshire and Merseyside, and Greater Manchester. The Units data reflects both new and total HIV cases and dates back to 1996.

The total number of HIV cases virtually doubled over the nine-year period from 1996 to 2005, rising from fewer than 300 in 1996 to over 600 by mid 2005. The data suggests that black Africans living in the Northwest have an unusually highly risk of contracting HIV compared to other ethnic groups. This trend applies to both newly diagnosed HIV cases from January to December in 2004 and 2005, and total HIV cases by the end of these periods. Also, this pattern seems to echo national trends.

Africans accounted for almost a quarter (23.1%) of total HIV/AIDS cases (3574), by far the highest figure of all ethnic minority groups. For comparison, black Caribbeans made up less than one percent (0.7%, or 26 cases). The vast majority of black Africans (93.1%, or 769 of 826 cases) contracted HIV through heterosexual interactions. This contrasts sharply with Caucasian cases, of whom more than three-quarters (75.2%) contracted the virus through homosexual intercourse. When the data was collapsed by gender, again, black African women accounted for the majority (63.4%) of the 857 females diagnosed with HIV.

These findings may be confounded by significant variations in the distribution of ethnic groups across the UK and native (British born) versus immigrant status. For example, population census figures show a much higher population density for black Africans compared with black Caribbeans in the Northwest regions. This may partly account for the over representation of Africans in some categories. Furthermore, it is not clear whether patterns observed are statistically significant. On the other hand the proportion of Africans amongst new and total HIV cases is over represented when compared with the proportion of Africans in the overall UK population.

Current Health Strategies

Prior to 2001 there was no official health strategy for promoting sexual health in Britain. In July 1999 the Secretary of State for Health presented a white paper to Her Majesty, the Queen, titled Saving Lives: Our Healthier Nation (The Stationary Office, 1999). Curiously the HIV/AIDS threat received little mention in what was otherwise a comprehensive document on the Governments health policy. The lack of an elaborate national strategy for HIV/AIDS meant that the steady increases through the 1990s in HIV-related morbidity and mortality (North West HIV/AIDS Monitoring Unit, 2005a) went virtually unchecked. This all changed in 2001 when the Department of Health published the National Strategy for Sexual Health and HIV (Department of Health, 2001, 2002, 2005a, 2005b). The strategy outlines several generic aims:

1. Reducing the transmission of HIV and other STIs (Sexually Transmitted Infections);
2. Reducing the prevalence of undiagnosed HIV and STIs (in other words, increasing HIV testing for people at risk).
3. Improve health and social care for HIV-infected people;
4. Reducing the social stigma associated with sexually transmitted diseases, notably HIV.

In 2005 the Department of Health published more detailed objectives for HIV prevention specifically within the African community (Department of Health, 2005b). These objectives were as follows;

HIV Prevention:

1.Reducing transmission (sexual and vertical);

2.Reducing prevalence of undiagnosed HIV cases;

3.Eliminating the stigma associated with sero-positive status.

Health and Social Care:

1.Ensuring that HIV-positive Africans have equal access to services;

2.Ensuring that those services are culturally sensitive;

3.Ensuring that service delivery is based on assessment of individual need;

4.Facilitating access to testing;

5.Making special provision for children and adolescents;

6.Improving adherence to anti-HIV treatment regimes;

7.Creating better access to education, employment and leisure;

8.Supporting carers and families;

9. Eliminating social exclusion is minimized.

Several strategies for prevention are outlined. The first plan is that HIV prevention must operate at both an individual and structural level.

Prevention activity at the individual level must address knowledge deficiencies (e.g., awareness of available health services), tackle inappropriate attitudes, beliefs, perceptions, and intentions, and teach relevant skills (e.g., condom negotiation). These goals can be achieved through various interventions including one-to-one counseling, out-reach work, telephone help lines, the internet, provision of sperm washing services, and clinical interventions to prevent mother-to-child transmission.

Structural prevention measures include reducing poverty, introducing and implementing appropriate laws and regulations, and modifying societal factors (e.g., social norms, stigma, discrimination), and organisational factors (e.g., supporting community health organisations). Structural change can be achieved through group, community, and socio-political level interventions.

Strategies for social care include: making peer support available at special ‘flashpoints’ of maximum need (such as at diagnosis, or during times of emotional distress), in order to improve adherence to treatment regimes; and providing support, advice, and education to sero-positive people, to help them to return to education.

Additionally, the Department of Health (2005a) has clarified how the National Strategy for Sexual Health can be implemented by primary medical services, through four contracting routes: Primary Medical Services (PMS), General Medical Services (GMS), Alternative Provider Medical Services (APMS), and PCT-led Medical Services (PCTMS). All four services rely heavily on nurses, and “provide flexibility and opportunities to tailor services around the needs of the patients” (p.17). Thus, in theory, the current sexual health strategy can be tailored to meet the needs of minority ethnic groups.

RATIONALE

Black Africans are the minority ethnic subgroup most at risk for contracting HIV/AIDS in the UK. It is therefore widely acknowledged that this group has special care and management requirements (Department of Health, 2005a).

Gaps in Care and Practice

This report reviews the literature on nursing HIV care provision specifically for the black African community. The review identifies various salient issues that need to be addressed:

1. Uncertainty about the role and effectiveness of nurses in prevention and care of this ethnic group.

2. Insufficient empirical evidence on various aspects of prevention/care including; the role of nurse in facilitating uptake of antenatal testing by African women, and HIV testing by Africans in general; the degree of involvement and effectiveness of nurses in community-based African HIV/AIDS projects; sensitivity to cultural factors in, palliative care, and self-management; Dealing with the HIV stigma and its effect on health service utilisation; and nurses roles in supporting involuntary care provision.

3. Inadequate evidence on the role that African nurses can play in reducing cultural barriers, and providing liaison and training services.

LITERATURE REVIEW

Literature searches were performed using several electronic data bases: PSYCHINFO (BIDS), INTERNURSE, Academic Search Premier (EBSCOhost databases), British Medical Journal On-line, HIGHWIRE Press, SOCIAL CARE Online, Department of Health database, and the Internet. Various combinations of the following key words were used: nurse, nursing, care, African, black, ethnic, minority, women, sub-Saharan Africa, community, HIV, AIDS, palliative, and antenatal^[1].

Priority was given to studies published from the late 1990s, although due to the paucity of literature some earlier studies are reviewed. Furthermore, emphasis was placed on UK studies. However, limited evidence from Sub-Saharan Africa is considered to highlight certain cultural issues.

Finally, the review is structured in relation to prevention (including antenatal testing and transmission through breastfeeding), and health and social care (Department of Health, 2005a).

The Nurses Role

The National Strategy for Sexual Health and HIV (Department of Health, 2001, 2002) illuminated the rise in HIV sero-prevalence for ethnic minority groups in Britain. Nursing care was identified as essential in managing sexually transmitted diseases and promoting sexual health in these groups.

The prevention and care strategies for African communities, specified by the Department of Health (2005b), provide a framework for nurses to tailor their roles to meet the cultural needs of sero-positive Africans. Miller and Murray ((1999) provide a comprehensive account of some of these cultural characteristics, specifically regarding response to a positive diagnosis, parenting issues especially for HIV-infected mothers, problems of disclosure, attitudes towards death, immigration issues, and common health care dilemmas, and effective engagement between carer and patient.

Training

According to the Medical Foundation for AIDS and Sexual Health (2003) nurses do not receive any special training in HIV care and prevention. The Nursing and Midwifery Council (NMC) approves special HIV training courses for nurses but these are not offered in all universities and colleges, and may be optional at institutions that offer them. According to Campbell (2004, p.169), "Pre-registration training for nurses does not include mandatory education relating to sexual health services. Nurses working in sexual health gain post-basic education in an ad-hoc manner - through working in the specialty, and by undertaking specialist post-registration courses". Moreover, although the NMC regularly monitors courses, it does not scrutinise individual courses that confer no special qualification, so that they may be considerable variability in the quality of courses offered in different institutions.

Thus, it is possible that a large percentage of nurses have no special knowledge or skills in HIV prevention/care for ethnic minority groups. It follows that many nurses that may be ill prepared to deal with the particular HIV needs of African communities. However, nurses who work in Greater London, and hence are regularly exposed to African patients/communities, may quickly acquire some degree of ad-hoc expertise. By contrast nurses based in other parts of the country with smaller African communities may be especially uninformed and inexperienced.

Role Ambiguity

In the absence of mandatory HIV training, there may be some ambiguity about the precise roles/tasks nurses are required to perform in HIV care/prevention. Campbell (2004) notes that career pathways are patchy and ill defined, and it may be necessary for nurses to undertake placements in key areas of sexual health. Certain aspects of HIV care are applicable to other diseases, and hence may form part of a nurse’s standard training and job description (e.g. antenatal testing, patient pre-admission assessments). However, certain tasks are specific to HIV and/or a particular population group. Some nurses may be uncertain whether such roles are within their jurisdiction. For example, whose job is it to reduce the powerful HIV stigma that prevents many sero-positive Africans from testing for HIV, and/or benefiting from family support? Who is responsible for addressing cultural taboos and totems?

 

Palliative Care

This refers to nursing care aimed at maximising the quality of life for terminally ill patients, for example by reducing pain and discomfort. The National Council for Hospice and Specialist Palliative Care Services (NCH-SPCS) identifies seven domains of palliative care: increasing patient/carer understanding of diagnosis/prognosis; alleviating pain/symptoms; facilitating patient independence; reducing patients/carers negative affect (e.g. anxiety, depression); soliciting support from other agencies; advising on appropriate care locations as illness progresses; supporting families/carers, before/after death.

To what extent do nurses meet these requirements met in sero-positive black African patients?

There is a paucity of research addressing the palliative care needs of black African patients specifically. However, some studies have examined the needs of ethnic minority groups in general (Jack et al, 2001; Diver et al, 2003). Various barriers to effective palliative care for ethnic minorities have been identified including communication difficulties and the lack of trained interpreters (Jack et al, 2001).

Diver et al (2003) conducted a qualitative study to identify the specific palliative needs of ethnic minority patients attending a groups regarding palliative care. Participants comprised two Jamaicans, one Indian, and one from the Ukraine, but no black Africans, who attended the day-care center once or twice weekly, for up to a year. Several key themes emerged. One concerned the individual needs of the patients, which were not related specifically related to culture (e.g. diet, religion, day care, avoiding social isolation). Two other themes highlighted attempts to fit in with the dominant culture, for example by eating English foods and communicating with staff in English. Another theme highlighted positive perceptions of palliative care: participants expressed gratitude to staff, with one individual noting “the Macmillan nurse had been sympathetic and had not pressurised her when she decided to stop having chemotherapy” (p.395). However, participants reported that staff had not inquired about their culture albeit they simultaneously felt their cultural needs were being addressed. Although Diver et al’s (2003) study involved a very small sample, the findings suggest that nursing staff can effectively meet the palliative needs of minority patients.

Some evidence suggests that nursing care can be more effective when a liaison professional is involved. Jack et al (2001) assessed the value of a ‘liaison’ worker that mediates between ethnic minority patients, their families, and health care staff. This study focused on the role of an ethnic minorities ‘liaison’ officer, appointed in May 2000. The workers brief is to facilitate palliative care amongst the Asian community specifically. Thus, he/she helps with communication, religious, gender-specific, bereavement, and other issues. However, several case studies are presented that illustrate the difficulties inherent in using a liaison person. For example, the liaison role is emotionally demanding and health care staff sometimes assume the liaison worker has medical expertise. Nevertheless, the concept of a liaison worker may improve the job performance of nursing staff involved in palliative care.

Hill and Penso (1995) make recommendations that tailor palliative care to the needs of ethnic minority groups. These include: ethnic monitoring; having an equal opportunity policy; enforcing a code of conduct; staff recruitment/training; developing a communication strategy; health promotion; facilitating culture-specific care provision; appropriate food policies; community health initiatives. Given the paucity of research evidence focusing of HIV-positive black African patients in the UK, it remains unclear the extent to which these strategies facilitate effective palliative care in this population group.

Some evidence is available concerning palliative care delivery in sero-positive women living in Sub-Saharan Africa (Defilippi, 2000; Gwyther, 2005). This evidence may provide additional insights that may apply to the care of black Africans who have emigrated to the UK. Gwyther (2005) documents the nature of palliative care in South Africa. Here, hospice care is primarily performed at home, with only a few inpatient units available on a short-term basis to selected patients (e.g. those with serve symptom control problems). A comprehensive 'community-based home care programme' has been established, in which patient care is provided by the local community (e.g. extended family, neighbours), but managed by health care (hospice) staff. Thus, "there has been a shift away from the conventional hospice domiciliary nurse as the primary caregiver to community care workers, who are trained, supervised, and supported by the professional nurse" (p.113).

This South African model has several advantages when applied to the UK theatre: Firstly, training extended family members (and perhaps even neighbours) in palliative care, with the aim of managing AIDS, and decreasing transmission of the HIV virus, may help resolve problems of communication, diet, custom, and other culture-specific issues that the patient considers relevant. This model goes some way to address Hill and Penso's (1995) recommendations for recruitment/training, effective communication, culture-specific care, suitable food policies, and community health initiatives. The professional nurse, free from some primary responsibilities of care, may be able to commit more resources to ethnic monitoring, enforcing codes of conduct, and ensuring equal opportunities in practice.

Evidence-Based Practice

There is a growing requirement in nursing and (other medical specialties) for evidence-based medicine/decision making (Thompson, et al, 2004). Evidence-based practice is particularly essential in the care of minority groups due to the relatively greater level of cultural ignorance in health care about ethnic minority customs compared with the dominant culture (Serrant-Green, 2004).

There is a paucity of research assessing the degree to which nurses refer to empirical evidence when making clinical decisions about black African HIV patients. Thompson et al (2004) suggest that, in reality, nurses rarely consult evidence when making clinical decisions, irrespective of the patients’ background. Instead they are much more likely to consult their colleagues for information for advice. This is worrying because clinical decisions can be made about black-African patients based on incorrect assumptions rather than fact. For example, Gibb et al (1998) highlight the possibility that nurse midwifes may fail to offer antenatal HIV-testing to black African women, for fear of appearing discriminatory. Yet, there is little or no evidence about how black women may actually perceive such offers.

Overall, there is a paucity of research on the role and effectiveness of nurses in delivering health and social care to the African community. Studies that focus on “black” patients (i.e. Afro-Caribbean or African parentage) cannot be generalised to Sub-Saharan Africans as HIV/AIDS incidence and prevalence is significantly different for these groups, suggesting different health care requirements. Similarly, data collected from Asians, Bangladeshis and other UK minority groups is generally inapplicable as the cultures are vastly different.

The role of African Nurses

A significant number of black African nurses work for the NHS. These individuals may play an important role in facilitating HIV prevention and care in the African community (Andalo, 2004; UNISON, 2005). There are two ways this may happen. Firstly, African nurses can serve as 'in-house' liaison workers, improving communication and eliminating cultural barriers between the health service and African communities. Secondly, African nurses can help in 'educating' other health-professionals on fundamental cultural issues, both in relation to the African community as whole, and individual sero-positive patients.

The Department of Health (2000b) acknowledges the significant contributions of African nurses to sexual (and other) health issues in the African community, in the form of the Mary Seacole Leadership Awards. A recent article published by BioMedCentral (Batata, 2005) indicates that over 3000 nurses trained in Sub-Saharan Africa were registered to work in the UK in 2002/2003. These nurses originated from eight countries (South Africa, Nigeria, Zimbabwe, Kenya, Zambia, Malawi, Botwana and Mauritius), most of which have high HIV sero-positive prevalence rates. It therefore follows that these professionals will be very familiar with HIV preventive and care measures that work effectively with African communities.

Approximately a quarter of all the foreign trained nurses registered during 2002/2003 (i.e. including nurses from non-African countries) worked in or near London, with 49% based in other parts of England, suggesting that there is a significant nurse pool available to support African communities in the London area. Unfortunately, there is a lack of research evidence on the role of African nurses in facilitating HIV care and prevention in African communities.

Most studies focus on immigration, recruitment, or discrimination issues, rather than job performance and impact on care provision for local communities. The World Health Organisation (2003) indicates that one of the three top non-EU source countries for international nurses working in the NHS is from a Sub-Saharan African country (South Africa). The number of nurses recruited from Zimbabwe has increased recently. Nevertheless, recruitment and retention remain a problem. Although the NHS is thought to have one of the most effective nurse recruitment schemes in the public sector, there are still problems recruiting African nurses. For example, Andalo (2004, p.17) notes that although there has a been a significant increase in the number of Africans applying for nurse diploma courses, the rejection rate was more than fifty percent higher for African compared with white applicants. However, an argument for more recruitment can be better formulated given empirical evidence on the value of African nurses in promoting HIV prevention and care in their community.

Department of Health (2005b) highlights the “need for basic information regarding HIV transmission, testing, and treatment. In particular, cultural practices that place some Africans at particular risk of transmitting or acquiring HIV requires specific, culturally competent attention” (p.13). Community nurses play an important role in this regard (Hoskins, 2000). Moreover, effective dissemination of knowledge requires collaborations between health professionals and agencies, access to services, and other recommended measures (Department of Health, 2000a, 2001, 2002, 2005a, 2005b).

 

Community Nursing

Community nursing care for sero-positive Africans in Britain has expanded rapidly over the last decade, reflecting a national shift in emphasis towards community care (McGarry, 2004). The Department of Health framework for prevention and care emphasised the importance of partnerships between HIV prevention agencies, Primary Care Trusts, local African community-based organisations, and other establishments (Department of Health, 2005b).

According to the Department of Health (2005b), over 75% of black Africans in Britain live within Greater London. The largest concentrations live in Inner London Boroughs, which also have high sero-prevalence rates. Thus, the role of community nursing in the Greater London area is of particular interest.

There is some evidence of collaboration between different agencies. One south London HIV partnership incorporates up to fourteen HIV prevention organisations, including several African-based projects: One African project covers up to nine catchment areas (Croydon, Kingston, Lambeth, Lewisham, Merton, Richmond, Southwark, Sutton, Wandsworth), and promotes the access to and utilisation of local HIV care and support services. This project recently launched a new treatment service designed to encourage men to adhere to treatment regimens.

There is a paucity of research on the efficacy of such partnerships in reducing the spread of HIV in the black African Community.

More importantly, there is limited empirical evidence on the involvement and impact of community nurses in these projects.

The partnership in south London offers complementary HIV care services across the local area. Some of these services are available from local HIV clinics, were nursing staff presumably play a key role. Furthermore, there appears to be specific community nursing provision for children and families. For example a children's hospital in Croydon offers nursing care for HIV-infected children and their families. Community nursing services are also available for adults.

A study was commissioned to review progress on African HIV prevention initiatives in Enfield and Haringey, from 1997 to 2002. The investigation collected data on HIV-prevention needs, and voluntary and statutory sector provision, all of which are implemented by nurses (e.g. health visitors, community nurses, nurse midwifes).

It was found that a lay referral system, operated solely by friends and family, worked effectively. Medical support from nurses and other health professionals was requested when symptoms become too serious. Compared with other ethnic groups HIV-positive Africans were more reluctant to test for HIV, and those who were sero-positive showed lower uptake of anti-retroviral treatments. Furthermore, there was evidence of poor attendance at clinical monitoring sessions, and it was argued that late uptake of testing suggests that Africans underestimate their personal risk. There was a general consensus service users that nurses and other health workers, were essential sources of information.

The study highlights a shift away from 'information giving' towards more 'scientific' provision of preventive and care services. Nursing staff can clearly play an important role in community 'profiling' (Hoskins, 2000), in which the health needs of the community are systematically studied and addressed. Crucially the report notes that "some community-based groups have developed good working relationships with GUM and special treatment services that provide information and advice about HIV prevention and safer sex for African (and other) service users" (p.28). HIV Antenatal coordinators were appointed at both North Middlesex and Chase Farm, and have been effective in increasing uptake of antenatal testing, with some nurse midwifes reporting 100% uptake for women they have offered testing to. The coordinator also managed a clinic service targeted at pre-conceptual sero-positive women who wished to have children.

The report highlights the uncertainty concerning whether GU clinics regularly collect data from African patients which can then be used to improve service provision. The current literature review uncovered no clear evidence of such data collection, which would provide a useful resource for evidence-based care and prevention. There is a need for audits that address this issue. Community nurses can also play a crucial role in conducting randomised clinical trials on matters like uptake, and follow-up.

Thompson et al (2004) note that both primary and secondary care nurses tend to rely on fellow nurses and other health professionals, but notably the clinical nurse specialist (CNS), when they are uncertain what to do. Such reliance on colleagues when dealing with African patients is fine provided those colleagues have the necessary cultural training and awareness to be able to offer accurate advice. Otherwise, wrong information will be disseminated with negative implications for efficient care delivery.

Thus, in addition to accumulating an adequate African evidence base, it is necessary for nurses to have easy/quick to access a well-informed health professional. African nurses, health visitors, and midwifes may be an invaluable resource in this regard.

Hoskin's (2000) identifies key areas of community nursing care, all of which are essential to providing accurate and relevant HIV information and support to the African community. These comprise community profiling, tackling inequality, providing local health resources, implementing health policies, and engaging with statutory bodies.

 

Profiling. This entails the systematic collection of local data from a designated population in order to identify and meet their health needs. Profiling provides a “snapshot of the health of a community at a given time, which can be subsequently updated on an on-going basis” (Hoskins, 2000, p.247). The Department of Health perhaps provides the most comprehensive published account of the health care requirements of black Africans in the UK infected with HIV (Department of Health, 2005b). This document offers invaluable information for community nursing care. For example, it identifies vulnerable subgroups and makes specific recommendations for prevention and social care.

 

However, the Department of Health document is generic in focus, and does not report any statistical analysis of the data collected. For example, the document makes references to the HIV-related stigma but offers no statistically significant information on group differences (e.g. between African males and females), and its effect on service utilisation. Furthermore there is a lack of smaller-scale scientific profiling that focuses on a local community, and/or specific issue (e.g. poverty). Such limited profiling has been carried out successfully in other areas of public health. For example, Hoskins (2000) notes that community nurses carry out yearly health profiling of pupils in local schools in Glasgow. Information gained can be used to facilitate local health promotion strategies tailored specifically for the local community.

Tackling Inequality. The emphasis here is on reducing discrimination in health care and ensuring the people have more control over factors that influence their quality of life. Community nurses can use knowledge of local communities, acquired through profiling and established community contacts, to identify areas of concern and work out appropriate redress. There is a paucity of African-based evidence in this area.

Local Health Resources. Increasing the availability of health resources in the African community is essential for effective treatment and prevention. In addition to the usual NHS primary care facilities, the introduction of personal medical services (PMS) contracts across England has put decision-making about health care provision in the hands of community nurses and other health professionals (Cook, 2005; Department of Health, 2005a). There is little or no evidence on the value of PMS, and other contracting routes for providing primary medical services, for HIV care in the African Community, even though the benefits seem tangible. For example, a PMS set up specifically to cater for a HIV needs, within a local African community, may be especially effective because clinical decisions can be adapted to suit local cultural requirements.

Implementation of Health Policies. To what extent do community nurses implement Department of Health guidelines for regarding provision of HIV/AIDS information? It is difficult to answer this question due to the severe lack of empirical studies focusing on Africans. Although examples of good practice can be found, there is a dearth of scientific evidence on effective implementation (for example based on health outcomes, or patients perceptions) in African communities. The little available evidence suggests that nurses may sometimes fail to fully implement recommendations, for example providing information about antenatal screening, for fear of appearing discriminatory (e.g. Gibb et al, 1998).

Information about Support Services. Little is known about the value of health visitors in establishing links between public health services and African community projects, such as AHEAD. Hoskins (2000) describes an example in which health visitors from the Strelley Nursing Development Unit in Nottingham worked with local traffic authorities to reduce the high rates of accident-related mortality and morbidity in Nottingham. There is a lack of evidence concerning the viability and efficacy of such collaboration with African HIV community projects, for example to increase testing uptake.

The paucity of research evidence in community nursing has been highlighted in several papers published in the British Journal of Community Nursing (Tyler, 2000; Pollard, 2001; McGarry, 2004). There is a notable paucity of Randomized Control Trials (RCT) that address various aspects of HIV nursing care and prevention for black Africans. For example, RCT evidence is lacking on the efficacy of community projects in London. How effective are these schemes, for example in terms of cost-effectiveness, or improving uptake of health services? Do community nurses from local HIV clinics and GU departments get involved with these projects to a significant degree, and if so, what impact do they have?

Dimond (2000) highlights the importance of patient confidentiality in community nursing, albeit without specific reference to black Africans and their particular need to avoid disclosure. Although “there are few statutes which create a legal obligation for confidential information to be disclosed” (p.402), the consequences of accidental disclosure, for example in response to aggressive demands from family members who feel they have the ‘right’ to know, can nevertheless have devastating implications for a black African patient (Doyal & Anderson, 2004; Muula & Mfutso-Bengo, 2004). It is not clear whether community nurses are especially cognisant of this potential problem when briefing or caring for patients from the African community. There is little or no mention of this in the literature (e.g. Dimond, 2000).

Fears about asylum legislation and immigration status may hamper the utilisation of health services, even when people are aware such services are available. For example Doyal and Anderson (2004) found that many black African women do not seek essential treatment due to immigration concerns. Nevertheless, many women "relied heavily on health workers for both physical and psychological support" (p.173). This finding was attributed primarily to two factors: Firstly, the availability of a free health care system (those women permanently resident in the UK were entitled to NHS services), which contrasts sharply with severely under funded and inaccessible health systems in most Sub-Saharan countries; Secondly, receiving treatment or care was generally perceived as life saving, and hence essential.

Information on Antenatal Testing and Mother-Child Transmission

Antiretroviral treatment and avoiding breast-feeding can significantly reduce the risk of mother-child transmission of the HIV virus. Thus, information about antenatal screening is offered to pregnant women who are sero-positive and from areas or population sub-groups with high sero-positive prevalence. Nurse midwifes are involved in dispensing this service (Duffy et al, 1998; Gibb et al, 1998; Jones et al, 1998; Lyall et al, 1998; Nicoll & Peckham, 1999; Reynolds, 2004). However, there is evidence of low up-take of antenatal HIV-testing amongst pregnant sero-positive Black African women. Some studies suggest that nurse midwifes can influence the level of uptake.

Gibb et al (1998) studied women attending six inner London maternity units with a high prevalence of HIV-positive cases. All six units offered antenatal HIV testing, as a policy. A questionnaire was used to obtain demographic and other data over a twelve-month period in 1995 and 1996. Self-reports of ethnicity and place of birth were used to derive several ethnic categories including "black African", "partner black African", and "exposed in Africa", "South Asian", and "Latin American". Type of maternity unit had the strongest effect on uptake of screening. More importantly, "women who had been exposed in Africa and those who had a partner who was black African had the lowest uptakes" (p.260). It wasn't clear whether the women knew of their increased vulnerability, or if they knew, perhaps didn't want to test, or simply thought they would be tested automatically. Moreover there was a possibility the results were confounded by inconsistent care delivery by midwifes. More specifically, Gibb et al contend "Midwifes may also be reluctant to offer HIV-testing to African women because of concerns about perceived discrimination" (p.261).

Jones et al (1998) demonstrated the importance of nurse midwifes in facilitating uptake of antenatal HIV-testing. They analysed data from 3420 women (comprising black Africans and other ethnic groups) attending an HIV-testing programme. Several midwife characteristics were assessed, including age and years since qualification. Data on the duration of pre-test HIV discussions, whether the test result was to be dispatched by post, or collected in person, and the decision to test, was recorded. Analysis showed that the probability of testing doubled if pre-test discussions with a nurse midwife lasted longer than five minutes. Additionally, uptake levels were similar for midwives aged 40+ with more than ten years since qualification, and the youngest midwifes (aged 20 to 29 years) who had qualified recently (aged 0-4yrs). However uptake was significantly lower when offered by nurse midwifes of moderate age (30 to 39 yrs) and experience (5 to 9 yrs). Black African women were more likely than other ethnic groups to test. This study indicates the pivotal role nurses play in promoting antenatal testing in black African women. However, as in Gibb et al's (1998) study, Jones et al (1998) offer no information on whether women who failed to test were simply unaware of the service or harboured misconceptions about who should offer testing, and/or their risk status.

Information about HIV-Testing

Due to the high sero-prevalence in the African community HIV-testing is generally recommended by the Department of Health (2005b) as an essential preventive measure for Africans. Department of Health evidence is available on testing requirements for asylum seekers, the frequency of uptake, and cultural characteristics that may affect uptake . For example, it has been noted that the reaction of male partners, religious faith and the powerful HIV stigma may all negate testing for many Africans. However, there is limited evidence on the role of nurses in facilitating testing. Department of Health documents suggest that nurses and other health professionals should play an important role (Department of Health, 2005a, 2005b), however there is little evidence on the impact of nurses on African attendance at HIV-testing clinics.

A study by Erwin et al (2002) suggests that there is a continuing requirement for health promotion initiatives to increase HIV testing in the African community. Participants comprised 392 HIV-positive patients (26% black African) attending a HIV outpatient clinic in London, between July 1999 and March 2000. Eighty percent of African patients had consulted their GP prior to testing, and 27% were uncertain over their entitlement to care and where to obtain a HIV test. The majority (67%) received treatment within 1 month of testing, compared with 78% of white patients. However, more than 85% of all patients had presented for treatment within 6 months of testing. There was no direct evidence to ascertain the role played by nurses in effectively promoting testing. Interestingly, though, when asked to indicate the reasons for testing, only a minority (29%) cited the advice of doctors and nurses (see Figure 2). The primary reason for testing was illness and/or symptoms (40%). One way to interpret this evidence is that nurse activity in promoting testing is somehow deficient. Perhaps testing needs to be recommended more frequently and forcefully. Unfortunately no data for white patients is presented - it would have been interesting to see whether nurse/doctor recommendations were more important in persuading white patients to test.

Figure 2 Motivation for HIV Testing was attributed more to symptom perception than advice from nurse/doctor

African patients identified several areas of concern that may benefit from nursing support: failure to attend for testing due to financial constraints (40% of Africans, compared with just 2% of white patients); and difficulty arranging child care in order to visit the clinic (two-thirds of Africans). Nurses can help arrange free travel and temporary childcare. The HIV clinic in which the study was conducted had a designated African liaison nurse, whose role was to liaise between patients and HIV support services/agencies in the local area. However, the relevance of this nursing provision to patients was unclear. More research is necessary to ascertain precisely what impact nurses have in promoting testing, post-diagnosis attendance for treatment, and addressing concerns of access and childcare.

The Department of Health (2005b) notes that “HIV is heavily stigmatised in African communities and members of those communities with HIV require particular and appropriate support dealing with stigma and discrimination” (p.16). In addition to this stigma there is evidence that Africans in general underestimate their personal risk of contracting HIV, with the result that many individuals only present for treatment when AIDS has reached an advanced stage. In general HIV is associated with strong and negative taboos, totems, and other unfavourable attitudes (Miller & Murray, 1999; Muuler & Mfutso-Bengo, 2004; Rankin et al, 2005). These negative attitudes generate considerable secrecy in the community and can adversely affect the lifestyle of a sero-positive individual. Women are particular affected by the negative attitudes of the community, and often struggle to cope on a day-to-day basis.

Doyal and Anderson (2004) describe some reluctance by many women to disclose their HIV-positive status to friends and family, parents in particular. Such is the 'taboo' associated with HIV/AIDS in African families many women may remain HIV-positive for years without their families knowing anything about it. The shame, embarrassment, and reprimands would be just too severe, not to mention the very real risk of being stigmatised. Rankin et al (2005) argue that the HIV stigma encourages secrecy and denial. It has limited the effectiveness of HIV-testing programs in Sub-Saharan African, can discourage pregnant women from undergoing a HIV-testing. Furthermore, many women may expose their babies to HIV through breast-feeding so as to avoid arousing suspicion. So, what role can nurses play in reducing this stigma? This is a lack of empirical evidence in this regard.

The Department of Health (2005b) notes that “the reactions of some husbands or male partners to a woman’s positive diagnosis can be unhelpful and sometimes brutal, born out of negative stereotypes within communities. Such reactions can severely reduce the access to and efficacy of treatment and care and these issues need to be addressed within prevention campaigns and elsewhere” (p.18). In a clinical review of palliative care in the UK, Wood et al (1997) refer specifically to the social stigma, which can be so powerful that it hampers the uptake of essential palliative care. Language barriers, previous trauma from country of origin, and social isolation from extended family, may all prove problematic^[2]. Nurses rendering palliative care will have to contend with all these factors, and simultaneously meet standards of care by their profession. Wood et al (1997) present no research evidence on the capacity of nursing staff to meet these needs, for example in terms of patients satisfaction that their cultural needs are being met.

Overall, evidence on the impact of negative attitudes on African communities in the UK is limited. However, it appears that the main impact of the HIV stigma and other unfavourable attitudes is to delay treatment amongst those who need it most. The Department of Health (2005b) confirms “Africans are still presenting later than other patients even though they typically need to commence treatment sooner after diagnosis than their European counterparts (31 days versus 721 days). They also tend to have lower CD4 counts at diagnosis than other groups (166 compared to 357)” (p.18). Unfortunately, this type of evidence is often based on questionnaire surveys and hospital records. There is a lack of well-controlled (pseudo) experimental studies that may reveal a possible causal effect of negative attitudes on treatment attendance. While the link may seem obvious it is possible that other factors, such as counseling sessions and reassurances from nursing staff, may play a moderating role.

Much of the literature on cultural barriers to HIV care and management focuses on dietary, religious, family, language issues. One area that tends to be overlooked is culture-specific ethical considerations. Evidence from Sub-Saharan Africa suggests that certain ethical issues are especially salient when dealing with HIV/AIDS victims. Muula and Mfutso-Bengo (2004) identify several areas that pertain to HIV/AIDS in Malawi, but which may generalise to most other Sub-Saharan African countries:

1.Confidentiality (disclosure)

2.Collectivist leanings

3.Premarital HIV testing

4.Legal Provisions

Black Africans have an especially strong need for confidentiality. It is paramount that relevant information is kept “from those relatives who feel they have a legitimate right to know” (p.481). Then there is the collectivist orientation of African cultures. This means that the needs of the community (the ‘collective’) generally take precedence over individual requirements. Thus, for nursing staff involved in the care of black Africans, it would be inappropriate to “consider the individual as an autonomous being without due regard to the whole family or community” (p.483). For example, the siblings of a sero-positive woman may demand disclosure from nursing staff, and with a demeanor of entitlement, irrespective of the views (or presence/absence) of the women herself.

In review of ethical issues concerning HIV/AIDS care in South Africa, Uys (2000) notes that patients are often heavily dependent on their families for care and support, and hence will not risk rejection by challenging the cultural status quo. Moreover, extreme secrecy by sero-positive patients may hamper utilisation of health care services.

Premarital testing may not yet be universally accepted in black African communities. Thus, Muula and Mfusto-Bengo (2004) suggest voluntary HIV counseling for couples planning to get married, and/or testing before becoming sexually intimate. Although such remedies may encourage some individuals to test there is limited empirical research assessing the contribution nurses can make in promoting in promoting testing.

Regarding legal provision, it is not illegal in some African countries (e.g. Malawi) for a person who knows they are HIV-positive to have unprotected sex with another person without full disclosure prior to intercourse. This has implications for health promotion and HIV prevention in the UK theatre.

There is no evidence that UK immigrants from Sub-Saharan unscrupulously infect others, under the misguided impression that it is not illegal. Nevertheless, it is essential that nurses are aware of this legal point, and are able to advise sero-positive black African women accordingly.

Finally, Uys (2000) considers that nurses may occasionally have to deal with a patient who has been ‘rejected’ by their family, for fear of contamination or other reasons. However, such disputes can apparently be resolved through counseling.

In summary there are certain ethical considerations that seem relevant to black African HIV patients. However, there is lack of evidence to indicate whether NHS nursing staff are trained to recognise some or all of these ethical issues. A high level of nurse awareness and training will facilitate care delivery.

CONCLUSIONS

This brief seeks to address two key questions concerning HIV/AIDS and black Africans living in Britain: Firstly, what is the role of the nurse in the care and management of sero-positive black African women? Secondly, what is the role the nurse in health promotion and disease prevention in HIV positive black African patients? Neither of these questions can be answered conclusively for several reasons. First, the role of the nurse in HIV care and prevention in African communities is ambiguous. Nurses receive no special mandatory training in sexual health and there do not appear to be a clearly defined set of roles which nurses are required to perform. Secondly, although specific HIV care and prevention 'tasks' are identified by both the Department of Health (2005b) and the Medical Foundation for AIDS and Sexual Health (2003), these roles are ascribed to professionals in general, rather than nurses specifically. Thirdly, there is a distinct lack of nursing research on sexual health, let alone HIV care/prevention in a specific community. In the paucity of empirical literature may be partly attributable to the ill-defined roles and training for nurses on the topic.

The lack of nursing research was also highlighted by Serrant-Green (2004), in her systematic review of the literature on nursing research and sexual health in UK ethnic minorities. She contends that various socio-political hindrances concerning the nature of nursing practice and sexual health have engendered "a dearth of research evidence to support the development of sexual health practice and the education of health care professionals to underpin care of minority ethnic clients" (p.511).

One of the problems that has hampered research in this area include confounding of the notions of 'sexual health' research (e.g. nursing care, health promotion, disease prevention) and HIV/AIDS research (e.g. drug development, epidemiology, drug resistance), such that any research on HIV/AIDS is assumed to somehow incorporate the role of nurses in health care. Another problem is the long tradition of focusing on certain aspects of ethnicity, such as identity, poverty, youth culture, and education. Specific health care needs do not 'fit' readily within this group of issues.

There is also the problem of 'homogenisation' whereby ethnic groups are conceptualised according to stereotypes, hence losing sight of individual differences and demographic variety within a given ethnic group. Thus, for example, many studies on the health care needs of ethnic minority groups fail to account for gender differences. The comprehensive survey by the North West HIV/AIDS Monitoring Unit (2005a, 2005b) provided very limited data on black African women specifically, despite their high-risk status. Furthermore, studies often fail to distinguish between black Africans and Black Caribbeans. RCTs and other empirical studies that investigate important preventive or treatment behaviours (e.g. antenatal uptake) in African women and other ethnic minority groups often fail to account for the role of the nurse. Gibb study on the role of midwifes in antenatal uptake may be one of a few exceptions.

Given the paucity of research on nursing care and management of HIV/AIDS-positive black Africans, it is difficult to make conclusive inferences on the subject.

Nevertheless, certain tentative deductions are possible, and areas for improvement identifiable, based on the limited evidence available.

Figure 3 There is ambiguity about the role of nurses and their effectiveness in HIV prevention/care for the African community.

An important issue that has emerged from the present review is the importance of distinguishing between the role of nurses and their effectiveness in performing these roles (see Figure 3). Even if nurse roles in sexual health were clearly defined, even for minority ethnic groups, this would say little about the impact of nurses on health outcomes when they carryout these roles. The Medical Foundation for AIDS and Sexual Health (2003) illuminates this discrimination by distinguishing between standards of treatment, prevention, and care, on the one hand, and audit indicators. Standards are defined as "what the NHS should do and/or what people with HIV should have access to achieve [a health] outcome" (p.28). Thus standards incorporate specific interventions or roles (e.g., diagnosis, treatment, providing clean injecting equipment). By contrast, audit indicators are measurable "ways to assess whether the standards have been achieved" (p.28). Thus, audit indicators are a mechanism for assessing the effectiveness of service delivery (e.g. number of new HIV infections in a given health care district, or time frame, percentage of GUM clinics where condoms are freely available).

What is clear from the present literature review is that there is severe lack of empirical research assessing nurse’s effectiveness in promoting HIV care and prevention in the African community

Implications for Nursing Practice

There is physical evidence that certain Department of Health (2005b) recommendations for prevention and social care are being implemented, notably the forming of partnerships between NHS public health agencies, African community organisations, and other communities and HIV/AIDS agencies. However, even the Department of Health acknowledges, “much of this work has gone undocumented and unevaluated” (p.30).

There is room for improvement.

The first priority is to make nurse training on sexual health mandatory, with the option of 'specialising' in the needs of particular population groups. Training curriculum should be consistent with Department of Health (2005b) guidelines for HIV prevention/care. Next, it is necessary to stimulate research to evaluate nurse effectiveness in HIV prevention and care, especially for the African community. This could be in the form of RCTs focusing on salient topics like antenatal uptake, effective practice for the clinical nurse, impact of personal medical services, and the feasibility of evidence-based practice. Other specific areas for improvement in nursing care are considered below.

Prevention

Improvements in community nursing and public health may have important long-term benefits for the black African populations because of the emphasis on prevention. Comprehensive health alliances already seem to exist that focus specifically on the needs of black Africans infected with HIV/AIDS. The Department of Health proposed the ASTOR scheme designed to help refine HIV interventions, such that there are clearly defined “Aims, intended Outcomes, Settings, Target populations, Objectives, Methods and Resources/Rationale”. The advantage of this framework is that it allows the scientific evaluation of an intervention, for example through RCTs, in terms of its effects on the community, health outcomes, and cost effectiveness. This is necessary if an adequate evidence base is to be built up, which in turn may facilitate the evidence-based practice that nurses have called for (Tyler, 2000; Pollard, 2001).

There is a need for RCTs (Pollard, 2001) to assess the impact of these activities on various health outcomes amongst African communities, especially African women. Research is also necessary to evaluate effective implementation in practice. Evidence on antenatal testing and mother-child transmission is limited and patchy. Nurse midwifes clearly play an important role as they are required to offer testing to pres