This report presents the findings from a Health Technology Assessment programme commissioned study that aimed to establish the feasibility of a novel sexual health promotion intervention for people with serious mental illness (SMI). This study had two main aims:
Secondary aims were to gain a better understanding of the sexual health needs of people with SMI who use mental health services, and to explore the cost-effectiveness of the intervention in preparation for a future large-scale fully powered trial.
This chapter provides the background and rationale for developing a sexual health intervention for people with SMI, and describes the research objectives. The remainder of the report is divided into the following seven chapters, each representing specific phases of the study:
Background
People with SMI (e.g. psychosis, schizophrenia and bipolar affective disorders) account for approximately 1% of the population.1 SMI includes mental disorders such as schizophrenia-spectrum disorders, bipolar disorders and severe major depression where there is significant functional impairment and limitation of major life activities.1 In the UK, people with these needs typically require the care of secondary mental health services. Some people with SMI may require the services of secondary mental health care over an extended period of time because of the impact that these disorders have on functioning and the activities of daily life. In addition to their mental health needs, this population experiences significant inequalities in physical health compared with the general population, with their life expectancy approximately 15–20 years less than the general population.2 To address this disparity, the physical health and well-being of those with SMI has been recently prioritised in mental health services3 and there is some evidence that the sexual health of this group has not been addressed as effectively as other aspects of health.4
The nature of the problem
The World Health Organization’s (WHO’s) definition of sexual health5 includes not just freedom from sexually acquired infections; it defines it as experiencing one’s own sexuality that is satisfying, positive and respectful, and free from exploitation and violence.
Most people with SMI live in the community and many are sexually active throughout their adult life. It is hard to estimate the level of sexual activity of people with SMI in the UK as there have been no studies undertaken; however, in a systematic review of 52 studies (predominantly conducted in the USA, with a few in Australia, India and Canada),6 it was estimated that just under half (44%) of people with SMI were sexually active in the preceding 12 months. In a reanalysis of data from a previous study, Bonfils et al.7 found that 30% of people with SMI had been sexually active in the last 3 months prior to data collection.
Although sexual activity is generally less frequent than levels reported in data for the general adult population6 for a range of reasons (impact of mental illness, medication and/or lack of sexual partner), sexual practices seem to involve a greater proportion of ‘high-risk behaviour’ such as condomless vaginal and anal sex.8
Human immunodeficiency virus
People with SMI have an elevated risk of infection with human immunodeficiency virus (HIV), hepatitis B and hepatitis C. A systematic review and meta-analysis of 91 prevalence studies of blood-borne viruses9 (BBVs) (hepatitis B and C, and HIV) found that pooled HIV prevalence estimates were elevated in every area of the world for people with SMI, and much higher than expected in that area’s general population. Pooled data for the prevalence of HIV infection in people with SMI in the USA were 10 times higher than for the general population (6% vs. 0.6%).10
Sexually transmitted infections
There is less research attention paid to sexually transmitted infection (STI) prevalence in people with SMI than in people with HIV. However, studies from the USA and Brazil have indicated that STI rates are also elevated for people with SMI. In the USA, Vanable et al.11 found that 38% of 464 psychiatric outpatients reported having had STI. In a study of sexual health interviews for 2475 psychiatric patients in Brazil, Dutra et al.12 found that 26% had a lifetime history of STIs. In the questionnaires, participants were asked about STI symptoms as well as whether or not they had any medical diagnosis of a STI; the majority of participants reported symptoms as opposed to medically diagnosed STIs (although 10% reported having had a diagnosis of gonorrhoea).
Reproductive health
Pregnancy rates are lower in women with SMI, yet the rates of terminations of pregnancy are higher than in the general population.13 Simoila et al.14 undertook a comparison of termination of pregnancy rates in Finland for women with schizophrenia and schizoaffective disorder, and matched healthy women using large health data sets. They found that the numbers of terminations of pregnancy were similar between the two groups; however, as pregnancy was a rarer event in the women with schizophrenia, the risk of abortion was twofold. Terminations in the group with SMI were associated with being younger, being single and having a lack of contraception. Therefore, women with SMI should have access to advice about a range of contraception and the planning of pregnancies in order to have control over their fertility, as well as having support around decisions regarding whether or not to continue with a pregnancy.
People with SMI experience higher levels of exploitation and violence in sexual relationships.15 Elkington et al.16 have suggested that one factor that mediates exploitative relationships is stigma (from self as well as others) regarding mental illness. People who feel that they are less attractive because of their mental health diagnosis may be more likely to be vulnerable to exploitative and abusive partners, as they perceive that they have limited choices of partners. High scores on the Mental Illness Stigma Scale (MISS-Q) have been associated with risky sexual behaviour.17
In addition, people with SMI are more likely to have a history of childhood sexual abuse. Abuse histories are associated with sexual risk-taking as adults such as condomless anal and vaginal sex with multiple partners, sex working and sex trading.8,12 Another factor that could be mediating risky sexual behaviour is that many people with SMI have co-occurring drug and/or alcohol use and drug and/or alcohol problems. This can lead to unsafe sex as a result of intoxication (poor decision-making, being unprepared) as well as trading sex for drugs and/or alcohol. During an acute phase of illness, some people are more likely to engage in unsafe sex as a result of hyper-sexuality, sexual disinhibition and poor judgement and planning.8
Informed about sexual health
Several studies indicate that there are gaps in information and awareness related to sexual health issues for people with SMI ().
Gaps in information and awareness related to sexual health issues for people with SMI identified by previous studies
Mental health service response to sexual health
Sexuality and sexual health issues are rarely discussed with service users in mental health settings.22–24 Service users themselves value positive sexual relationships,20 yet because of ‘self-stigma’ and other vulnerabilities they feel limited in their choices of sexual partners and, therefore, more vulnerable to sexual exploitation and abuse in relationships.16
In focus group discussions held in two different NHS services in England,4 mental health clinicians reported awareness of a range of sexual health needs of the people in their care, but some reported that they would usually avoid raising the topic of sexuality, sexual health and abuse. The reasons for this ranged from fear of offending the person, concerns about destabilising their mental state, feeling that they lacked the knowledge to address the sexual health issues that may be raised, and lack of knowledge about local sexual health services. Despite this, the participants recognised that sexual health is an important aspect of people’s lives. They were able to describe a number of issues that they had become aware of related to the topic and they saw promotion of sexual health, as well as facilitating access to appropriate family planning and sexual health clinics, as part of their clinical role. In addition, they recognised that they could play an advocacy role in terms of assisting people to get access to appropriate family planning and sexual health clinics. However, they also acknowledged that their knowledge regarding sexual health and sexual health services was limited. These findings were echoed in a survey of mental health staff in England and Australia about sexual health provision.25 Participants from both countries reported that very limited sexual health work was being undertaken in routine practice but they did see it as part of their role. Therefore, in order to address this issue, mental health staff require training and guidance in relation to sexual health issues in SMI and in how to engage people in conversations about sexual behaviour, and offer advice about where to access help for contraception and sexual health concerns.
Despite experiencing significant health disparities, people with SMI struggle to get their wider physical needs assessed and treated.2 Therefore, promoting the sexual health of people with SMI could fall into routine practice in mental health services that can often be the only health service that some people with SMI are engaged with.
Current sexual health concerns in England
Sexual health is an important public health concern in England26 and there are key areas that require attention for the promotion of sexual health in the general population. Overall, the incidence of new diagnoses of many STIs has remained stable in recent years but there are some disproportionate rises in STIs in specific populations. Chlamydia is the most common STI (almost half of all STIs diagnosed are chlamydia) and the impact of STIs remains greatest in young people aged under 25 years. There has been a 21% rise in gonorrhoea and a 19% increase in syphilis in men who have sex with men (MSM), and this is possibly as a result of an increase in condomless sex.27
HIV rates are declining for the first time since it was first identified 30 years ago.28 The mortality of someone diagnosed promptly (shortly after infection) with HIV is comparable with the general population for the first time. This is because of access to effective treatments to suppress the virus. However, this is not the case for late diagnosis and those diagnosed late have a greater risk of death within the first 12 months of diagnosis. Therefore, people engaging in condomless sex with new or casual partners of unknown HIV status should be tested for HIV every 3 months, and gay/bisexual men and other MSM should be tested for HIV every year.
In summary, in the general population, STIs are most prevalent in young people and in specific groups, such as MSM (who may be more likely to engage in high-risk sexual behaviours). Early detection and treatment of STIs is crucial, not only to improve the prognosis and prevent further harms (e.g. untreated chlamydia leading to fertility problems) but, in some cases, to prevent mortality (e.g. late diagnosis of HIV is associated with death from AIDS within 12 months of diagnosis). In addition, the treatment of STIs (and HIV) can also prevent onward transmission, hence the term ‘testing as treatment’. Therefore, it is essential that all health professionals are aware of the current issues in sexual health, able to ask questions about sex and sexuality as part of routine care, able to offer advice about testing and treatment, and able to offer access to condoms in the local area.
Policy context
There is no specific mention of people with mental illness in the recent Public Health England sexual health policy.29 However, there is some emerging awareness of this issue in mental health policy, specifically within the ‘improving physical health for people with mental illness’ agenda. A recent document from the Department of Health3 (Improving the physical health of people with mental health problems. Actions for mental health nurses) includes a chapter on sexual health, outlining sexual health needs, and care responses to those needs, by mental health nurses. In addition, sexual health is mentioned (albeit very briefly) in a recent joint report by the Academy of Medical Royal Colleges and the Royal Colleges of General Practitioners, Nursing, Pathologists, Psychiatrists, Physicians, the Royal Pharmaceutical Society and Public Health.30 Both of these documents support the role of mental health nurses and psychiatrists in promoting sexual health in mental health care settings.
Justification for sexual health promotion in mental health
Sexual health promotion activities such as regular check-ups, increasing knowledge and awareness of risky sexual behaviour and how to keep oneself and sexual partners protected are essential in terms of prevention of STIs, as well as in detection. Untreated STIs can lead to significant health problems (e.g. the human papilloma virus can lead to cervical cancer, and other STIs such as chlamydia can result in infertility). BBV such as hepatitis B and hepatitis C can result in premature death through the development of cirrhosis and liver cancer in the long term. Comorbidity of HIV and SMI, such as schizophrenia, poses significant challenges for both the person themselves as well as in the provision of treatment.31 The treatment and management of HIV requires early detection and adherence to a complex medicine regime to suppress the virus. This requires engagement with services and treatment adherence. Early diagnosis and treatment has resulted in people living well with HIV and has the potential to reduce onward transmission (treatment as prevention) by suppressing the virus to the extent that it is not present in sufficient quantities in blood and body fluids. However, many people are receiving a late diagnosis of HIV and are starting treatment after the point of maximum benefit.28 This latest data suggests that 13% of HIV diagnoses occur at a later stage of the disease and the prognosis is likely to be poorer.28
Evidence to support sexual health promotion interventions
Current evidence around improving sexual health for people with SMI has been conducted in the USA and Brazil, where a different set of cultural, organisational and socioeconomic factors exist from those in the UK.
Simply providing information (e.g. leaflets) alone is insufficient to bring about health behavioural change, and behavioural interventions that address knowledge, confidence, attitudes/motivations and behavioural skills are recommended.19 There have been two recent literature reviews that have examined the evidence for sexual health promotion interventions and found that the evidence is currently equivocal.32,33 All studies were conducted in the USA and most were group-based interventions. Some studies34,35 demonstrated a significant reduction in condomless sex, when compared with a control group, and some studies showed no overall effect.36,37 Both reviews32,33 recommended that further research should be undertaken in the UK to develop and evaluate an intervention, as well as the feasibility of undertaking a study that addresses sexual health needs in SMI.
