The psychosocial and health care needs of HIV‐positive people in the United Kingdom: a review

The introduction and widespread use of highly active antiretroviral therapy (HAART) since 1996 has resulted in falling morbidity and mortality rates among HIV-positive people in Europe, North America and Australia. This has transformed HIV into a chronic condition requiring long-term management and care. One consequence of the success of HAART is that the prevalence of HIV has increased, and there are now more people living with HIV in developed countries than at any other time in the epidemic. As a result of the success of HAART in terms of the clinical course of HIV and the primary call on budgets of drug costs, there is a danger that psychosocial issues may be overlooked. A review of the scientific literature showed that medical measures of HIV treatment efficacy are prioritized over sociocultural issues such as the psychological well-being of the HIV-positive person [2]. HIV has become a condition in which disease progression and treatment success are measured by medical technology, but this 'scientific' assessment may not equate with the lived experience of the HIV-positive person. The effectiveness of treatments demands their assimilation into people's everyday lives. Whilst most HIV-positive people have experienced significant improvements in their health [3,4], they may also experience unwanted sequelae from the drug treatment, a fluctuating clinical course and an uncertain health trajectory [5]. HAART has brought with it a new range of psychosocial issues for HIV-positive people to confront and needs for service providers to meet. In an attempt to understand better the social and psychological consequences of this dramatically changed situation, the British HIV Association (BHIVA) Social and Behavioural Sciences (SBS) Subcommittee commissioned this scoping exercise. The scoping exercise entailed a review of the post-Vancouver published and grey literature of relevance to the UK. The focus was the psychosocial and health care impact of HAART upon HIV-positive people. This report aims to identify the changes that HAART has had upon the experiences and psychosocial needs of HIV-positive people living in the UK. We, therefore, prioritize research and literature that highlights the changes in lived experiences and health care needs pre- and post-HAART, and, although many issues faced by HIV-positive people have remained the same pre- and post-HAART, we make little reference to literature published or research conducted before 1996. Many of the issues that we discuss below overlap, but we have organized this review into the following chapters. Chapter 2 describes the methodology employed to locate literature of relevance to this review. Chapter 3 describes the broad picture of HIV in the UK. Based on figures from the Public Health Laboratory Services SOPHID database, we look at the current composition of the known HIV-positive population in the UK and discuss trends. Chapter 4 examines the pertinent issues of relevance to specific groups of people with HIV in the UK: migrants, including asylum seekers; other groups, such as gay men, drug users, older people and prisoners; and families. Chapter 5 is topic based and focuses on psychosocial needs, social and sexual relationships, social exclusion, quality of life, adherence, side effects and prevention. Chapter 6 looks towards service provision and examines services in the light of the preceding two chapters which identify needs. Specifically, it looks at models of service delivery, problems of access and elements of what makes an effective service. Chapter 7 summarizes the main findings of this scoping exercise and makes recommendations for future research and service provision. This review concerned the impact of HAART upon HIV-positive people, and therefore all searches were for literature published in or after 1997, when use of HAART became widespread. Much of the post-1997 literature was based on pre-1996 fieldwork as a result of the occasionally lengthy hiatus between data collection and publication. Only literature based on post-1996 data was included in the review, unless the results were discussed in the post-HAART context. The focus of this review was the impact of HAART in the UK, and most of the key articles discussed below focused upon the situation in Britain. We also included both Northern Ireland and the Republic of Ireland. Published literature from other areas was included if relevant, for example if it was about generic issues such as returning to work, which may affect all HIV-positive people on HAART. Few non-English language publications were included. Literature about the situation of HIV-positive people in developing countries was not in the main included, as only a minority of the HIV-positive population in these areas had access to HAART. Some of the literature and research produced post-HAART was not on databases of published articles such as Medline. There were many reports produced by AIDS service organizations (ASOs), research institutes, local authorities, etc. which described research on psychosocial impact and health care needs. These research-based reports were therefore included, but in order to keep this scoping exercise manageable, the search for this 'grey literature' was restricted to the British Isles (including Ireland). We also focused exclusively upon HIV-positive people. We did not, in general, include literature about 'high-risk' groups. Thus, health promotion and prevention material was only included if it was targeted at the HIV-positive population or reflected their situation. In the course of locating relevant literature, we contacted many people and organizations working in the field in the UK. We did not, however, conduct any formal interviews and the scoping exercise did not involve primary research. The research strategy involved accessing major literature databases and searching relevant journals. The databases searched included: Medline; PsychINFO; Embase; BiomedNet; Web of Science; and the British Library catalogue. Key words were HIV or AIDS and psych* or social. Resulting abstracts were then read and, if deemed relevant, full texts were ordered on-line or through interlibrary loan services. Library catalogues also provided information on additional resources such as Internet sites, indexes, databases and particular journals. Journals identified as being of particular interest (AIDS Care, AIDS and Social Science and Medicine) were searched manually for relevant articles. Internet sites within the OMNI gateway were searched. We used the key words AIDS or HIV and social or psych* in the search engine. We also accessed other sites when looking for specific material or for information about specific topics. We trawled through abstracts of international conferences for relevant material. These included International AIDS Society (Durban 2000 and Barcelona 2002) and AIDS Impact (Brighton 2001 and Milan 2003). We did not include conference abstracts pre-1999 on the assumption that the most important material pre-1999 would have been published by 2003. We contacted (by E-mail, by phone, and face-to-face) over 50 organizations and people to seek research reports and information on ongoing research. These are listed in the Appendix. This is not a comprehensive list of institutions involved in psychosocial HIV research in the UK. We were unable to contact some organizations and others did not respond to our request. This section describes the epidemiology of the current HIV/AIDS epidemic. Figures and commentary are based on the most recently released data from the Public Health Laboratory Service (PHLS). Evidence from other relevant research-based studies is included. Changing patterns of diagnosis within risk groups are examined in more detail in relation to ethnicity, sexuality and gender. Regional patterns are discussed briefly. The year 2002 saw the largest increase in numbers of confirmed cases of HIV/AIDS over a 12-month period, since reporting began. In August 2003, the total number of confirmed cases for the year 2002 stood at 5542 (Table 1) [6]. Totals will rise as further reports are received, particularly for recent years. As Table 1 shows, two groups continue to account for the majority of new infections, as well as the overall increase in infections. Sex between women and men accounts for 57% (3152) of reported cases and men who have sex with men (MSM) for 29% (1617) of reported cases [6]. The increase within these groups will be discussed further below. Amongst two groups, however, new HIV infections appear to be falling. Injecting drug users (IDUs) accounted for fewer infections during the year 2002 than in previous years, and Scottish figures showed the lowest recorded rate (0.39%) of HIV infection amongst IDUs tested since records began. Thus, individuals who use illicit drugs intravenously have not formed the 'bridge' for HIV spread to the general population which was once considered probable [6]. The Scottish Centre for Infection and Environmental Health (SCIEH), however, suggests there is 'no room for complacency' [7]. Statistics published on the Scottish Drug Misuse Database reveal current high-risk behaviour amongst IDUs. Over one-third of 2925 needle/syringe users in Scotland shared equipment in the previous month [7]. The results of offering an antenatal HIV test to all pregnant women have not been as positive, in terms of reduction in vertical transmission of HIV, as had been hoped [6]. The rate of vertical transmission has fallen, although not as rapidly as had been anticipated: of the 301 babies born to HIV-positive women during 2002, three were HIV-positive, 60 uninfected and 238 of indeterminate status [8]. The numbers of pregnant HIV-positive women have risen during the past decade. Between 1990 and 1995, a total of about 90 cases were reported to the Royal College of Gynaecologists (RCOG). By 1999, this figure had increased by more than threefold, and by 2002, the total number of confirmed cases of pregnancy in HIV-infected women reached 720 [9], although not all of these women will continue to term [8]. Routinely offered antenatal HIV testing has inevitably increased the proportion of women, previously undiagnosed, who are now diagnosed during pregnancy. Pregnancies amongst women already diagnosed as HIV positive prior to pregnancy have also risen. The RCOG suggests that the availability of interventions to prevent vertical transmission may explain why greater numbers of diagnosed infected women are becoming pregnant [10]. In the year 2002, of the 700 HIV-positive pregnant women, over 200 were aware they were HIV-positive prior to conception. Another factor may be the number of women moving to the UK when HIV positive. HIV-positive children may have been born elsewhere before the mother knew she was infected. This may account in part for the less than expected reduction in vertical transmission [6]. In Scotland, the picture is of a 100% increase in positive tests amongst pregnant women between 2001, when there were 16 positive HIV tests, and 2002, when there were 30 positive tests. This is in spite of a falling birth rate, so reflects a doubling of the prevalence of HIV amongst this group since the mid-1990s from 2.5 to 5.8 per 10 000 [11]. The reasons for increasing prevalence amongst pregnant women in Scotland are undetermined but seem to reflect the increase in numbers of 'imported infections' [11]. This refers to the increasing number of students, migrants and asylum seekers from countries where the prevalence of HIV is extremely high, particularly southern and south-east Africa [7]. It is important to draw attention to the significance of social and economic context in a discussion of HIV epidemiology. Take, as an example of the intersection between deprivation and HIV status, the sexual health of residents of Lambeth, Southwark and Lewisham (LSL). Chinouya et al. [12] noted that, before the LSL Health Authority was abolished, in 2002, it ranked as the third most deprived in England, and the sexual health of LSL residents was the worst in England and Wales. There are disproportionately high levels of HIV/AIDS, concentrated amongst white homosexual men and members of African communities. An increase of 230% in reported cases was seen amongst LSL residents between 1996 and 2000. HIV is increasingly concentrated within underprivileged socioeconomic groups. A high proportion of African migrants and other ethnic minority groups are resident in LSL. Amongst migrants (including refugees and asylum seekers), levels of poverty and poor health are particularly high [12]. Rising numbers and proportions of new diagnoses of HIV are concentrated in London. However, proportionately, HIV diagnoses are rising throughout the UK. For example, between 2001 and 2002, new diagnoses increased in all areas (Table 2). Communicable Disease Surveillance Centre (CDSC) regional figures represent the numbers of individuals diagnosed within a region during a 12-month period. Geographical mobility, in particular as a result of dispersal policy (see below), accounts for a proportion of the disparity between numbers diagnosed and those accessing treatment and care within regions. For instance, in North-west England during 2002, a total of 355 individuals were diagnosed HIV positive, yet 2429 individuals were accessing treatment from statutory services in the region and 617 of these individuals were new cases [14]. In Scotland, the increase in numbers diagnosed was 12 between 2000 and 2001, and this rose to 56 between 2001 and 2002 [6]. The ratio of heterosexual to homosexual infections in Scotland doubled during the same period [7]. Scottish data, prior to 2002, contained no information concerning the ethnicity of HIV-positive individuals or their area of exposure. The disparity between known HIV cases and prevalence in Northern Ireland was demonstrated by the Unlinked Anonymous Survey conducted in Belfast between 1996 and 1999 [15]. Whereas the SOPHID data for 1999 estimated 58 homosexually active men living with HIV in mid-1999, the Unlinked Anonymous Survey data suggested there were another 300 men living with undiagnosed infection. The figures for the Republic of Ireland (ROI) are available for newly diagnosed cases to December 2002 only [16]. During 2002, there were 364 newly diagnosed cases of HIV in Ireland, bringing the total to 3009. This represents a 22% increase between 2001 and 2002. During 2002, 63.5% of new infections were acquired heterosexually, 13% were acquired by MSM, and 14% were acquired by IDUs. Of individuals infected heterosexually during 2002, 77% were of sub-Saharan African origin, and 10% were born in Ireland. In contrast to the UK, there was a decrease in the number of cases reported in the MSM category, from 73 in 2001 to 46 in 2002. The numbers are, however, small and whether this trend was sustained in 2003, remains to be seen. Again in contrast to the UK, there was an increase amongst IDUs, from 38 diagnoses in 2001 to 50 in 2002. These figures should be treated with caution, however, as the pattern is one of fluctuation within this group. In ROI, antenatal HIV screening was introduced by the Department of Health and Children in 1999. Nevertheless, eight children were confirmed HIV positive during 2002 and 119 babies, of as yet undetermined status, were born to HIV-positive mothers [16]. HIV infection rates attributable to sexual contact with a high-risk partner have remained stable over time, but heterosexually acquired infection has risen by four times. The increase within this group is mainly attributable to individuals who are infected through heterosexual sex in Africa, where prevalence rates are high and migration patterns are shaped by Britain's colonial past [6]. Epidemiologists at the CDSC note that the number of black Africans (n=160) who are recorded as having acquired HIV heterosexually in the UK has probably been underestimated. When an individual is reported to have been exposed to HIV in countries in more than one world region (such as Uganda and the UK), the likely area of infection is recorded as the country with the higher HIV prevalence. In some cases, however, allocation of likely infection area will be wrong [17], although it is not clear in which direction this has occurred. Proportionately, however, ongoing transmission in dispersal areas in the UK is increasing slowly. The number of infections amongst MSM has been increasing (Table 1), and will increase further as new reports are received [6]. This figure may reflect better HIV diagnosis as opposed to an increase in the pool of infected homosexual/bisexual men [6]. However, recent rises in rates of acquisition of gonorrhoea amongst young MSM, viewed as a measure of high HIV risk, also indicate the likelihood of increasing HIV rates amongst MSM. This trend may be attributable to the lower mortality rate amongst HIV-positive MSM post-HAART and a higher proportion of MSM engaging in high-risk sexual behaviours, increasing the contribution of this group to the incidence of HIV infection. Cook et al. [14] noted that, as well as indicating increases in risk-taking behaviour, sexually-transmitted infections may also act as a cofactor in the transmission of HIV. Another relevant consideration may be the maturing of a generation of homosexual men who may be less committed to the practice of safe sex, as HIV acquisition appears not to be a 'death sentence', but rather a 'life sentence' of pill taking [18,19]. In Scotland there is increasing evidence of high-risk behaviour amongst MSM [20], although the increasing syphilis and gonorrhoea rates have not yet been reflected in the numbers testing HIV positive [7]. The All Ireland Gay Men's Sex Survey, conducted in 2000, suggested an overall HIV prevalence of around 6% in the gay male population of Ireland [15]. Reporting of patient ethnicity has improved, but ethnicity is still unknown for 19% of those diagnosed since the beginning of 2000 (3056 of 16374). Among the 13318 for whom ethnicity is known, 40% are recorded as white and 52% as black African (Table 3). The numbers of individuals of other ethnicities are relatively small: 4% black Caribbean; 3%'other/mixed'; 1%'Indian Subcontinent'; and 1%'black other', the latter probably being British-born individuals of Caribbean descent. Heterosexual transmission accounts for the majority of infections amongst nonwhite ethnic groups, whereas in the white HIV-positive population only a quarter of infections are attributable to this route of transmission. Seventy-four per cent of HIV infections acquired heterosexually are acquired in Africa. Of those infected in Africa for whom ethnicity is recorded, 92% are black African. The remainder will include individuals who acquired HIV while visiting, living in or working in high-prevalence areas of Africa. Seventy-nine per cent of HIV-positive children, infected either in utero or postnatally, are of black African ethnicity. Although the proportion and numbers of those who define as Caribbean are, to relatively there are that this situation may rates of infections amongst individuals of Caribbean in the UK for about the for transmission of HIV The incidence of HIV amongst the Caribbean population is in there were new HIV diagnoses and by 2001 the figure had reached have to the of the amongst people of Caribbean In south-east of HIV with heterosexual transmission and others with homosexual transmission were of infection is also the high prevalence of HIV in some areas of the where rates of HIV infection are only to those in sub-Saharan Africa. The is towards an of HIV infection amongst ethnic in the UK, with an pool of infection being by to and or the of new migrants a high-prevalence with sexual between and resident communities. The HIV in is amongst the most rapidly in the However, there are data concerning this group in the UK, and fewer still for ethnic groups within this broad et al. all who their ethnicity as or at four between and 2002. Of were male and were Heterosexual transmission accounted for of infections homosexual transmission accounted for of infections. were more likely to at a of and were less likely to be a This would that sociocultural that to at and to be in order to respond to this For the HIV infections diagnosed since the beginning of 2000, the reported of HIV-positive ethnic groups the UK is those with ethnic the proportion of HIV-infected individuals who are white British from in the region of England to 92% in In Northern Ireland, and the North-west and of England, over of HIV-infected individuals are white The majority of the HIV-infected black Africans have been reported from (Table a of published literature about black Africans in the UK in the there are a number of recently conducted studies about HIV-positive black These include the The A was by Africans with HIV living in and who were mainly from and The This black Africans with HIV in the majority of whom were born in and Only were born in the UK. et al. in conducted 10 interviews with HIV-positive black women from Africa living with HIV in London. The Health of Africans with HIV [12]. This of a of HIV-positive black Africans in Lambeth, Southwark and Lewisham and interviews with All A of HIV-positive black African and black Caribbean HIV service of the studies that many HIV-positive black Africans faced major social issues to and As a was only one of many issues and it was not the most et in 3). issues were a lower than living such as and having to and largest between African and white British people with HIV was the to which needs were a a and being a were at as important as HIV status in the of HIV-positive African women in The majority of in all studies that was and was to be a major of for African women in with their The and methodology for which was developed in an both showed that the were well with all having some and about with or However, the numbers in were than with and for in both studies had access to economic and poverty their their high This trend was also noted among African women with HIV in the that of were employed for over 10 per [12]. The All findings were with of to or but only 22% in some of or the and showed that over of had been diagnosed in the UK less than 3 Whilst there is evidence that black Africans with HIV, this may be attributable to their not being in the UK rather than to problems accessing health care in the UK. in the UK may not be their et al. that of were probably diagnosed with HIV prior to in the UK, although report a lower figure of among black African to diagnosis were to those reported for other groups of HIV-positive people, with an period of by social and et in However, the that major was more among African than white people with HIV, a to the socioeconomic of the and were reported by African women major being more among African than white people with HIV, black Africans were three less likely to be to a health in of African have also been to be less likely by health for psychological in part they not unless are and Health and the There is evidence that an HIV diagnosis is particularly for those African people in the UK who have uncertain status et in et al. noted that it was clear that many had experienced AIDS in Africa where HAART is available and HIV remains a For who had experienced HIV in Africa, or for those status was not positive test results a As a they viewed their status and in the UK as a of and in all studies showed that they were active in the management of their In all the between and had treatment at some used to health included and use of was noted as a major in all the known as HIV-positive was with being treated by and the et in In the of African women one-third reported experience of by or from and a further third reported to also reported changes in their of after being diagnosed HIV positive also noted in the by et al. in of to In both the and over had However, the person most likely to have been to was a health Only a minority of those in the had their HIV status to a and well of the in either had to their rates were reported in the of African women et al. rates to be lower among black Africans and to other ethnic groups in London. Whilst there is evidence that may be more among these groups, which may this may also to of and may in the country of and is seen as et in was to a of social and to social et in The context was a part of people's lives. However, the context was not of in positive but rather as a in which had to be The showed that there were in HIV they be of HIV in the UK and 10% did not an they not the infection on to The also reported Of those having sex in the 4 majority of the 40% reported a only on some or on no per cent of men and of women reported no use when they had The report of used and The rate of sex is However, of reported problems [12]. The reported that

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.