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