Relationships and Wellbeing

What do we mean by relationships?

Our relationships with other people are an important part of who we are. In this report, relationships include those with friends and family, with romantic or sexual partners, as well as with people who are involved in our healthcare, such as GPs and clinicians.


There were a number of questions in the Positive Voices survey that provided an insight into relationships, their importance and the impact they have on our quality of life, for example:


  • Who have we told about our HIV status?
  • Do we have a main partner? How close are we to this person?
  • Do we have condomless sex with our partner/s?
  • Did we need and/or access advice on relationships, sex life, family planning, conception, and telling people about our HIV status?


Note on gender: when gender breakdowns are presented, transmen and transwomen were included in the gender groups with which they self-identified. Due to small numbers, thosewho identify as non-binary/in another way (representing 0.5% of Positive Voices respondents) are excluded from binary gender breakdowns.

HIV and relationships

Meaningful, authentic and honest relationships can make a real difference
to health and wellbeing, and improve quality of life. Forming relationships is fundamental to us, as it is for all people. This includes not just relationships with friends, family and partners, but also with those that support and care for us, such as advocates, peer mentors and healthcare professionals.

Sharing our HIV status with others

Whether to talk about our HIV status is usually a careful decision. Not everyone feels that HIV is something they want or need to talk about. But, for some it is important to be able to share the experience of living with HIV with family and loved ones; to feel closer, be heard and get support and advice if and when it is needed.


For some, feelings of shame, fear of rejection, and self-stigma can add anxiety around forming new relationships. Especially if we have previously faced rejection or judgement related to HIV, as this can cause or exacerbate negative feelings. Loving and accepting relationships are crucial in counteracting this.

In the survey, 87% of people said they had told a friend or loved one about their HIV status. But 1 in 8 (13%) had never told anyone about their HIV status outside of a healthcare setting. Those who had shared their HIV status, even with just one person, reported improved quality of life and mental health compared to those who had not.


In many cases, people encountered positive responses from sharing their HIV status, but this was not always so. There were examples where people were unsupportive; this can be very distressing and may make it more difficult to open up to others in the future.

Compared to men, women were less likely to have told their partner about their HIV status. In heterosexual relationships where power is skewed towards men,discussions around sexual health and HIV status may be more difficult. Somewomen may not feel safe saying they have HIV for fear of a negative response including emotional abuse, threats and violence. Some may simply prefer not to tell their partner as they do not feel that they need to know.


One in 4 people with HIV said they needed help disclosing their HIV status in the previous year:  this was higher in women (31%) compared to men (21%). Of those who needed support with this, 60% said they received it but 40% did not. In most cases this was because the person did not try to get this help, suggesting that some people are not aware that such support exists. HIV support services, including peer support, can provide spaces where people can talk openly about their HIV status, share advice and encouragement around telling others.

Romantic relationships, sex and sexual health

Sex and intimacy are a natural part of our lives. We have a right to enjoy sexual pleasure. Yet fear of rejection and anxiety about passing on HIV can prevent us from forming new sexual relationships or feeling close to a current partner. This can lead to loneliness, isolation and depression, and poor health.


Negative feelings about HIV and associated low self-esteem and self-stigma may also be exacerbated by power imbalances in an intimate relationship when one of us is living with HIV and the other is not. Overall, 2 in 5 (42%) people with HIV had a main partner – over half (57%) were HIV negative, 39% were HIV positive, and in 4% the HIV status was unknown.

Gender inequality can affect how women living with HIV experience intimate relationships. In the UK, 4 out of every 5 women living with HIV are migrants and 2 in 3 are of black African ethnicity. Women are more likely to be in care giving roles and to be in circumstances where they are not financially independent or lack power in their household or relationship.


Women living with HIV are at increased risk of gender-based and intimate partner violence, and this has been shown to negatively affect adherence to treatment, ability to negotiate sex, and healthcare access.

One in 16 (6%) of women needed support for domestic violence

One in 16 (6%) of women reported they needed support for domestic violence in the past year. Furthermore, studies on older women have shown high levels of problems with libido, pain during sex and other sexual dysfunction. In contrast, gay and bisexual men reported high numbers of casual

partners and higher rates of sexually transmitted infections (STIs). Therefore, it is important to explore romantic relationships and sex by gender and sexual orientation.

Women

  • The large majority of women identified as heterosexual (97%), while 2% identified as bisexual and 1% as lesbian, asexual or other.
  • Over half (57%) of women said they had a main partner. 55% had HIV negative partners, 36% had HIV positive partners, and 7% did not know their partner’s HIV status. Women were more likely to not know their partner’s HIV status (6%) compared to heterosexual men (3%) and gay and bisexual men (2%).
  • Of those with a main partner, 1 in 10 (10%) reported they were not close to this partner. Compared to women with close main partners, women who were not close to their main partner were significantly more likely to:

  • Almost half (46%) of women had condomless sex with their main partner in the last 3 months: this was consistent across all age groups and ethnic groups. Women whose partner was HIV negative were more likely to use condoms (39% all the time and 20% sometimes) compared to women whose partner was HIV positive (21% all the time and 22% sometimes).

  • In the context of HIV prevention, people with HIV may use condoms to prevent transmission to partners. However, 98% of all women with HIV had an undetectable viral load and were therefore not at risk of passing on HIV. Women with HIV may continue to use condoms to prevent STIs or unintended pregnancy but outdated knowledge of HIV transmission risk may also be a factor.
  • One in 4 (25%) women reported at least one casual sexual partner in the previous 3 months: usually (91%) only one partner was reported and these were nearly always men (98%). One in 3 (38%) had condom less sex with a casual partner. Viral suppression was high (98%) and not associated with whether women used condoms with casual sexual partners.

Men

  • Two-thirds (65%) of men with HIV identified as gay and a further 5% as bisexual. Three in 10 (29%) identified as straight/heterosexual; of these, 2% had sex with a man in the previous 3 months.
  • Among survey participants, 72% of heterosexual men and 55% of gay and bisexual men reported having a main partner. 99% of gay men said their main partner was a man, 98% of heterosexual men said it was a woman. Among bisexual men, 62% said their main partner was a woman and 38% said it was a man.
  • Compared to women, more men said they were close to their main partners. Fewer than 1 in 20 men (4.2% of gay and bisexual men and 4.4% of heterosexual men) felt they were not close to their main partners.

  • Men rarely (2%) stated a need for domestic violence support, and this did not differ by sexual orientation, but it was more common among men that were not close to their partner (18% of heterosexual men and 4% of gay and bisexual men) as compared to men that were close to their partner (1.3% of heterosexual men and 0.1% of gay and bisexual men).
  • On average, gay and bisexual men were more likely to report having casual sexual partners (52%) compared to heterosexual men (22%), a higher number of casual sexual partners (3 versus 1 in the previous 3 months), and condomless sex with casual sexual partners (64% versus 39%).

  • As for women, 98% of men had undetectable viral loads and had no risk of passing on HIV. However, STIs – which are associated with condomless sex and multiple sexual partners – were more common in gay and bisexual men with 20% diagnosed with an STI in the previous 3 months, compared to 5% of heterosexual men and 4% of women.
  • Heterosexual men were more likely to have an HIV positive partner (44%) compared to gay and bisexual men (36%).
  • Of those with a main partner, 40% of gay men and 30% of heterosexual men had condomless sex with this partner in the previous 3 months. Men with an HIV negative partner were more likely to use condoms (28% all the time and 30% sometimes) compared to men with an HIV positive partner (13% all the time and 13% sometimes).

Relationship needs

People reported needing support around sex and relationships, some of which was unmet. One in 5 women and 1 in 20 men reported needing family planning support in the last year, of which 25% and 52% said this need was unmet, respectively. 28% of women and 27% of men reported needing sex life advice in the past year, of which unmet need was 24% for women and 47% for men.


1 in 5 (20%) of women and 1 in 8 (12%) of men reported needing relationship advice in the last year. This need was higher among both men and women who either do not have a main partner or are not close with their main partner.


HIV specific support services can be a key source of support for these issues. 44% of women reported they have ever used support services compared to 35% of men. Almost a third (29%) of those who use HIV support services said that they had been more difficult to access over the past two years.


In England, local funding for HIV support services was reduced by at least 28% from 2015/16 to 2016/17 (the actual reduction is believed to be higher but isdifficult to calculate from the data available). In many places, charities have had to scale back their services, while others have closed altogether.

Undetectable=Untransmittable (u=u)

U=U means that people with HIV who have an undetectable viral load are able to have condomless sex without worrying about passing on HIV.


However, there have been and still are a lot of misconceptions about HIV transmission that contribute to stigma and fear. For some of us, feeling that
we may be a risk to others contributes to low self-esteem. These feelings are sometimes referred to as internalised stigma or self-stigma. Half of people living with HIV reported internalised stigma in the 2015 UK HIV Stigma Survey.


As a result, some people make the conscious decision not to have sex. Four in 10 (40%) people with HIV reported they were not sexually active (ie abstinent) in the previous 3 months: this was similar for both men and women. However, sexual abstinence was significantly higher (56%) among people diagnosed prior to 1996 (before antiretroviral medication was available), even after accounting for older age. A higher proportion of people who were sexually abstinent reported feeling depressed or anxious (54% vs. 47%) and reported worse health (36% vs. 24%).


Despite over 95% of people with HIV being on treatment and with an undetectable viral load, of the 60% of people with HIV who reported being sexually active, 43% said that they used condoms during sex all of the time, even in monogamous relationships.


The U=U message has helped to challenge internalised feelings of stigma and is reassuring for those who are unable to negotiate condom use. It has empowered us to embark on healthy and fulfilling sexual relationships. There is clearly real value in ensuring that everyone has access to information about U=U. However, not all people living with HIV know about U=U or the evidence behind U=U and therefore are unable to fully understand and trust U=U. It is vital that healthcare and support teams – especially clinicians – are clear and straightforward in their advice that HIV is not passed on through condomless sex when a person has an undetectable viral load.

What needs to be done?

  • All people living with HIV should have access to HIV-focused support services, including peer support. The government must clarify statutory responsibility for funding these services and local commissioners must work together to ensure access.
  • All people living with HIV should have access to specialised and
    high quality sexual and reproductive services, including support and information around starting a family and family planning, conception support for gay men with HIV, specialised peer support during pregnancy (mentor mothers), and support for women going through the menopause.
  • Women-focused support must be offered to women living with HIV. These support services should be attuned to cultural and gender dynamics if women are to be empowered to access the information, support and networks they need in order to achieve good health and well-being.
  • The women’s sector and the domestic violence sector (including those working with LGBT communities) must be protected and strengthened so that they can support people from diverse backgrounds and understand specific issues around HIV and intimate partner violence.GPs and HIV specialist services should have referral pathways in place.
  • HIV specialist support should be retained locally both to meet needs that generic services are unable to provide appropriately (for example peer support), and also to complement, train and work alongside this generic provision.
  • The government and local authorities must ensure targeted HIV information campaigns in communities affected by HIV, such as black African communities and among gay and bisexual men, include information on U=U.
  • Clinicians working in HIV and sexual health must ensure that the U=U message is consistently communicated so that more people living with HIV and their sexual partners can make informed decisions about their sexual health.

Relationships with healthcare professionals

Many people living with HIV rated their health as good or very good (73%). But, around three quarters of people living with HIV reported living with at least one other long-term condition. With the population of people living with HIV getting older, this proportion will only increase and for many of us, HIV will be less and less our primary health concern.


The HIV clinic has traditionally been involved in the broader care of people living with HIV. But, as the management of HIV becomes much the same as for other long-term conditions, the NHS priority to deliver integrated and person-centred care, including promoting self-care, is key. In this context, GPs rather than HIV clinics will have a central role in delivering care to people with HIV.


The survey asked participants to rate their HIV clinic and GP out of 10, and agree or disagree with the statements to the left.

People living with HIV reported a high level of satisfaction with HIV specialist services. Average agreement to all statements about HIV clinic experiences was more than 95%, with small differences seen between groups. People agreed that their HIV clinics provided adequate information about their HIV and helped them self-manage their condition.


In contrast, agreement to all GP statements was lower at 59–65%. Overall, only 64% of people agreed that their GP knows enough about their HIV condition and treatment. Even fewer (59%) were comfortable asking their GP questions about their HIV. GP satisfaction among the general public closely mirrors GP satisfaction ratings of people living with HIV.

Outside of the HIV clinic, healthcare providers may lack the knowledge or confidence to treat and prescribe for conditions where HIV is also present. This can leave us feeling responsible for educating non-HIV specialists about basic HIV facts, and researching drug interactions and treatment side effects. Mutual trust and open communication helps build good relationships with clinicians and GPs, as does becoming as expert patient. It can also give us theconfidence to challenge instances when we are treated differently by someonein a healthcare setting.


Having our needs met relies on us being proactive and persistent in seeking support or advice. But not everyone is empowered to self-advocate for the treatment and care they need. Support from HIV services and peers can help us to gain knowledge, develop skills and form good relationships with our healthcare team.

What needs to be done?

  • All NHS services should treat people living with HIV with dignity and respect so that we feel safe and can participate in our care. Local and national commissioners and NHS leaders must have zero tolerance for HIV stigma and discrimination.
  • The HIV clinic is only one part of a person’s care, and models of care must be responsive to the changing needs of an ageing population of people living with HIV.
  • NHS leaders should ensure that all NHS staff are trained on HIV and are linked to local HIV expertise and services. Training should include awareness of stigma, transmission routes and U=U.
  • Clinicians and other service providers across the system should know about drug interactions and how to avoid them.
  • The findings from Positive Voices should be considered in needs assessment and planning of future health and social care services for people living with HIV.
  • Care must place us at the centre and be provided across a well-integrated system that we are confident in using.
  • New models of care must consider the roles of the GP, social care, support services – including peer support – and other health specialists.

Talking about HIV and our relationships report

To view the Changing Perceptions report regarding HIV and our relationships  please click on the Download below.