The psychosocial and health care needs of HIV ... - Wiley Online Library

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2004 British HIV Association

HIV Medicine (2004), 5 (Suppl. 1), 1–4

The psychosocial and health care needs of HIV-positive people in the United Kingdom following HAART: a review G Green and R Smith

Contents

Chapter 5. Core psychosocial issues 5.1. Psychological needs and mental health 5.1.1. Psychiatric/psychological morbidity 5.1.2. People with severe mental illness 5.1.3. Psychiatric care and interventions including counselling 5.2. Social impact of HIV 5.2.1. Living with uncertainty 5.2.2. Identity and adjustment 5.2.3. Stigma 5.2.4. Social support and relationships 5.2.5. Social support interventions 5.3. Living with HIV 5.3.1. Quality of life 5.3.2. Work 5.3.3. Poverty and social exclusion 5.4. Treatment issues 5.4.1. Starting treatment 5.4.2. Adherence 5.4.3. Side effects, especially lipodistrophy 5.4.4. Illness and death 5.5. Prevention 5.5.1. Sexual behaviour of HIV-positive people 5.5.2. Appropriate prevention measures 5.5.3. Coercion vs. autonomy Chapter 6. Models of service delivery 6.1. Standards of care and managed networks 6.2. Funding 6.3. Barriers to accessing services 6.3.1. Logistical obstacles 6.3.2. Stigma 6.3.3. Information 6.3.4. Cultural difference 6.4. Health care provider/patient relations 6.4.1. The ‘technologization’ of HIV care 6.4.2. Empowerment and self management 6.4.3. Training needs for health care providers 6.5. An effective service 6.5.1. Cultural appropriateness/recognizing difference 6.5.2. Multidisciplinary teams

Chapter 1. Introduction: Aim and organization of the review Chapter 2. Method: Search strategy 2.1. Limitations 2.2. Accessing published literature 2.3. Accessing grey literature Chapter 3. HIV-positive populations in the UK 3.1. Epidemiology: general trends 3.1.1. Intravenous drug users (IDUs) 3.1.2. Mother to child transmission 3.1.3. The significance of socioeconomic factors in contextualizing HIV 3.2. Regional impact 3.3. Heterosexual transmission 3.4. Transmission between men who have sex with men (MSM) 3.5. Ethnicity 3.5.1. HIV-positive people of Caribbean origin in the UK 3.5.2. HIV-positive South Asians in London 3.5.3. Regional disparities by ethnicity Chapter 4. A fragmented HIV population with diverse needs 4.1. Migrant communities 4.1.1. Black African groups 4.1.2. Other migrant/non-white groups 4.1.3. Asylum seekers, refugees and dispersal 4.2. Other groups of HIV-positive people 4.2.1. Men who have sex with men (MSM) 4.2.2. Drug users 4.2.3. Older people 4.2.4. Prisoners 4.2.5. Women 4.2.6. Heterosexual men 4.3. Families 4.3.1. Positive parenting 4.3.2. Issues for positive children and adolescents 4.3.3. Issues for affected children and adolescents 4.3.4. Caring for people with HIV

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6.5.3. Family clinics 6.5.4. Co-ordination of services Chapter 7. Summary and recommendations 7.1. Key findings 7.1.1. HIV in the UK reflects the global picture 7.1.2. An increasingly fragmented experience 7.1.3. The ‘normalization’ of HIV and focus on living 7.1.4. Unmet need 7.2. Key challenges: Recommendations for future research and service provision 7.2.1. More focus on the psychosocial impact of long-term survival 7.2.2. Psychosocial interventions 7.2.3. More focus on social exclusion 7.2.4. A policy and service environment that respects human rights

Executive summary Chapter 1. Introduction Highly active antiretroviral therapy (HAART) has had a dramatic impact not only on the natural history of HIV but also on the psychosocial and health care needs of HIVpositive people. HAART has brought with it a new range of psychosocial issues for HIV-positive people to confront and psychosocial 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.

Chapter 2. Methodology Scoping exercise parameters The scoping exercise was defined by the following parameters. Inclusion of research-based evidence collected in the UK and the Republic of Ireland. Inclusion of published literature based on research conducted in other countries only if relevant to the situation of the HIV-positive population in the British Isles. Focus throughout on HIV-positive people rather than ‘high-risk’ groups. Restricted to literature relating to the post-HAART era (post-1996). All literature based on the pre-HAART era was excluded, including that published post-1996 but based on data gathered pre-HAART.

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Search strategy Published literature was accessed through searching relevant databases and journals. Grey literature was accessed via the Internet, conference proceedings, and direct contact with over 50 organizations in the British Isles. We collated over 300 peer-reviewed articles and research reports and 300 abstracts.

Chapter 3. HIV-positive populations in the UK – general trends 2002 saw the largest increase ever in numbers of newly diagnosed HIV-positive people in the UK. Men who have sex with men remain the largest group. Transmission via heterosexual sex is rising dramatically and most HIV infections acquired heterosexually are acquired in Africa. Eighty per cent of HIV-positive children are of black African ethnicity. Vertical transmission from mother to child continues and there is a small risk even among those who take prescribed drugs during pregnancy, have a Caesarean birth and do not breast-feed. Rising numbers of all newly diagnosed groups are concentrated in London.

Chapter 4. A fragmented HIV population with diverse needs The emerging epidemiology has created a very fragmented HIV population in the UK with diverse needs. Migrant communities HIV-positive migrants are predominantly of working age and well educated, but because of their migration status may be unable to apply for or find work. The lives of HIV-positive migrants are often characterized by poverty and social exclusion, which have a more profound impact on their everyday lives than HIV. In every respect, asylum seekers are particularly vulnerable, especially since the introduction of dispersal policy (Immigration and Asylum Act 1999). This relocates migrants to areas where they may have no support networks and face hostility from the host population, and which may lack a well-developed HIV service infrastructure, thus compounding existing trauma and threatening adherence to treatment. Pregnant women are at particular risk. Gay men A process of ‘normalization’ has been identified among gay men diagnosed pre-HAART in which the salience and social impact of HIV are lessened.

2004 British HIV Association HIV Medicine (2004) 5 (Suppl. 1), 1–4

Impact of HAART on psychosocial/health care needs of HIV-positive people in UK: review 3

There is evidence that high-risk sexual behaviour postHAART is increasing among gay men. There is a clear prevention need to be addressed. Older people As people live longer with HAART, there is a rising number of HIV-positive people over 50 years old. They are more likely to have poorer psychological health related to a greater likelihood of comorbid conditions and economic hardship, and of being more severely affected by HIV-related stigma. Other groups The number of drug users currently being diagnosed with HIV is declining, but there is a dearth of studies on the psychosocial needs of drug users post-HAART. Post-HAART, the burden upon HIV-positive women continues to be great. HIV threatens their motherhood and puts an additional strain upon them as primary caregivers, and may increase the likelihood of their being subjected to gender violence. There are very few studies that focus on HIV-positive heterosexual men. HIV-positive prisoners may find that the demands of a prison regime hamper adherence to HAART. Families Reproductive decision-making is difficult for HIVpositive people as vertical transmission is a risk. Disclosure of parental and/or child HIV-positive status to children is a major stressor for parents and may require psychosocial support over time. HIV-positive children grow up with a sense of difference and many are not fully aware of their diagnosis. HIV-positive adolescents face the added challenge of negotiating sexual relationships. In addition, they may find the transition to adult services difficult. HIV-negative children in families affected by HIV may suffer a loss of childhood. The majority of families affected by HIV are also affected by poverty.

Chapter 5. Core psychosocial needs Psychological needs There has been a shift from acute mental health problems associated with dying to chronic complex problems associated with living.

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There has been an increase in depressive disorders and sexual dysfunction. Uncertainty remains a feature of HIV. There is a need for rigorous evaluation of a range of psychosocial interventions.

Social exclusion HIV is no longer seen as a ‘plague’, but HIV-related stigma continues. Stigma may lead to non-disclosure and lack of support. More HIV-positive people are considering returning to work. There are many concerns that, if they do so and then stop work, they may lose entitlement to the welfare benefits that they currently have. Poverty is a salient feature in the lives of a high proportion of the HIV-positive population in the UK.

Treatment Starting treatment is problematic for those who are healthy and feeling well. The treatment may well make them feel ill. This has been referred to as the ‘treatment paradox’. Adherence can be difficult. This is less to do with the failure of patients or clinicians than with the failure of treatments to fit into everyday lives. The side effects associated with HAART are problematic. In particular, lipodystrophy and lipoatrophy may lead to low self-esteem and serve as visual stigmata of HIV. The health of some HIV-positive people does not improve with HAART and some may die. Because of the optimism associated with HAART, failure to respond to the therapy may lead to a profound feeling of failure.

Prevention There is concern that HAART may increase sexual risk behaviour among HIV-positive people, and there is some evidence that this is occurring, at least among HIV-positive gay men. Prevention work needs to be grounded within the community at which it is targeted. All prevention interventions need to be thoroughly evaluated. It is important that prevention efforts remain noncoercive and do not threaten the autonomy of HIVpositive people.


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Chapter 6. Models of service delivery Barriers to accessing services There are logistical barriers which restrict access to HIV services, especially for the most marginalized groups. HIV-related stigma may deter HIV-positive people from accessing services. Cultural difference may also deter those from ethnic minority groups accessing services that are mainly run by the ethnic majority and were originally targeted at gay men and drug users. Health care provider/patient relations Post-HAART HIV care has become more medicalized, and clinicians now manage the virus rather than the patient. This has been referred to as the ‘technologization’ of the social relations of care. At the same time, the health policy of empowering service users has fostered the concept of the ‘expert patient’ with greater scope for service user involvement. Health care providers need to have a range of skills to provide appropriate treatment, in addition to an understanding of clinical aspects of the disease. These include: cultural competence to provide appropriate care to HIV-positive people from a range of ethnic groups; an understanding of social, psychological and cultural issues affecting individuals and population groups affected by HIV; understanding of stigma associated with HIV. Key to effective services The evidence from this review broadly supports the recommended standards for National Health Service (NHS) HIV services proposed by the Medical Foundation and Sexual Health charity (Medfash) [1]. Services need to be culturally appropriate. Services need to be multidisciplinary to support the complex needs of their clients. Many of the family

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clinics which have been set up serve as an excellent example of multidisciplinary teams adopting a preventative psychological model of care. Co-ordination of care amongst agencies is needed to provide the continuity of health and social care required by many of the HIV-positive population.

Chapter 7. Summary and recommendations Key findings Being HIV positive is an increasingly fragmented experience. The HIV-positive population in the UK is very diverse and has diverse needs. Post-HAART, there has been a normalization of HIV in terms both of policy and of the illness experience of HIV-positive people. Psychosocial needs in the post-HAART era are focused on the problems of living with HIV and are diverse and complex. HIV-related needs are compounded by social exclusion, particularly among migrant populations. HIV in the UK is increasingly a disease characterized by poverty, thus conforming to the global picture of AIDS.

Key challenges To co-ordinate good quality professional psychosocial support and counselling in a number of different agencies to meet the myriad psychosocial needs. To provide additional mental health support geared towards HIV as a chronic illness affecting vulnerable populations. It is essential that such provision is rigorously evaluated to ensure that the support is effective. To ensure equity so that all people with HIV in the UK, whoever and wherever they are, have access to appropriate support.
