About Us

Changing Perceptions – a community-led Positive Voices project

Changing Perceptions is a community-led project, shaped and guided by people who responded to the Positive Voices survey. 


Through workshops, a large and diverse group of people with HIV shared personal experiences and directed the Positive Voices data analysis. The result is a series of reports and a web resource that aim to change perceptions about living with HIV. The project is supported by Positively UK, National AIDS Trust (NAT) and researchers from Public Health England.

The Positive Voices survey

Positive Voices is a unique survey of the lives and experiences of people living with HIV in England and Wales. Between January and September 2017, people were randomly sampled from 73 HIV clinics and invited to take part in a survey issued by Public Health England. Over 4,400 people completed the survey, which was more than half of those asked. This sample represents about one in twenty of all people who are living with HIV in England and Wales.


The survey asked about: health and wellbeing; non-HIV health conditions and medications; experiences in healthcare; met and unmet needs; sex and relationships; lifestyle issues; and financial security. The questionnaire was designed in collaboration with people living with HIV, academics, clinicians, and NHS commissioners.

People with HIV in the UK

In the UK, people living with HIV are from all backgrounds and walks of life. However, there are certain groups who are disproportionately affected – gay and bisexual men, migrants, people from black African and Caribbean ethnic communities, and people who inject drugs. 


Today, HIV can be managed effectively with medication and regular check-ups. This means that people living with HIV, diagnosed and treated at an early stage, have a normal life expectancy. Being on effective treatment also means that people will not pass on the virus to others. Nevertheless, society’s knowledge and attitudes towards HIV have not kept pace with these developments. There are widespread misperceptions about HIV and for many, the problems long associated with HIV, such as discrimination, poverty, stress and isolation, remain as challenging as ever. 


HIV affects not only individuals, but also the communities we are part of and the people around us, such as friends, family, and partners. Sharing one’s HIV status can be empowering, yet many still struggle or choose not to talk about HIV with others. When they do, there is uncertainty whether they will face a positive reaction - which can be a source of support and strengthen relationships, or a negative reaction - which can hurt and have long-term consequences on emotional health and the ability to form future relationships. Often there is a feeling of responsibility when sharing our status, to be HIV educators. 

The Positive Voices survey

Introduction

In the UK, people living with HIV are from all backgrounds and walks of life. However, there are certain groups who are disproportionately affected – gay and bisexual men, migrants, people from black African and Caribbean ethnic communities, and people who inject drugs.


Today, HIV can be managed effectively with medication and regular check- ups. This means that people living with HIV, diagnosed and treated at an early stage, have a normal life expectancy. Being on effective treatment also means that people cannot pass the virus on to others. Nevertheless, society’s knowledge and attitudes have not kept pace with these developments. There are widespread misperceptions about HIV and for many people living with HIV the problems long associated with HIV, such as discrimination, poverty, stress and isolation, remain as challenging as ever.


As medical advances have transformed HIV from an acute, often fatal infection, to a chronic condition, HIV care and support services must also adapt to remain relevant and accessible. Recent changes to the delivery of health and social care have been mainly driven by political and financial pressures, rather than evidence that provides a clear understanding of the changing needs of people with HIV.


This is one in a series of reports that brings a new focus to the diverse needs of people living with HIV today; blending personal stories with findings from Positive Voices – the largest, most representative survey of people with HIV to date. Through storytelling, people with HIV have brought the survey to life by putting statistics in the context of real lives in order to challenge attitudes and change perceptions about HIV. Each section gives recommendations for policy change to better meet the needs of people living with HIV.


These are our stories, we are sharing them with you because we believe that perceptions around HIV must change, so that we can lead healthy lives and be treated with dignity and respect.


Whether you are someone living with HIV, a researcher, politician, healthcare worker, commissioner, or simply stumbled across this report, we hope that these stories will resonate with you and change your perceptions of HIV.

How people think and feel about HIV

Talking to others about HIV

When it comes to telling people about HIV, no two experiences are the same. HIV is still a highly stigmatised condition and for many people living with HIV, talking to others about their status is a significant step. This can often be due to concerns about the perceptions of others, or rejection, or can be down to not wanting to worry others. 


In the Positive Voices survey, more than one in ten (12%) people said that they had not told anyone about their HIV status other than healthcare professionals. While some simply may not feel the need to talk to others about HIV, for others this could contribute to significant loneliness and isolation, especially if it is a barrier to forming desired relationships with others. One in five people reported that they needed help with loneliness and isolation in the past year.


In our stories section, the process of talking to friends or family about HIV seemed to be very important for wellbeing. Some selected very carefully who they talked to and had told, for example, friends and not family. Others were in a position of being open about their status with a broad range of people. It is, though, important that the decision to tell other people is taken by the person living with HIV themselves. Where this agency is removed through a breach in confidentiality it can lead to significant distress. There will be occasions where a person living with HIV is in fact safer not talking about their status if they know that the response won’t be a supportive one.


The importance of strong HIV support services, such as peer support, is also clear. For some, support services and peer support can help people to prepare for and feel comfortable with telling people about their HIV status. This could be from hearing about the experiences of others; or be down to supporting people to deal with their own internalised stigma, before talking to others and managing what their perceptions may be. 


Overall, around one in four people living with HIV said that they needed support disclosing their status in the past year (for 39% of those, this need was not met). 


Women living with HIV are more likely to tell family than their friends about their HIV status. A significant proportion of women living with HIV are from BAME and/or migrant communities where stigma can be very high. This again is an example of why support services, where HIV can be safely discussed, can be so valuable to women.  95% of women said HIV support services are slightly/moderately important to them or very important to them (90% of men said the same).


Nearly a third of women (31%) said they needed support with disclosing their status in the past year. This was left unmet for 29% of them. 


The Process

Community Involvement

The survey was anonymous, but participants were invited to provide contact details if they wished to take part in further activities or research. Almost a third of participants did so. These individuals were contacted in early 2018 and 29 people from around the country attended two workshops in central London in May. Here they reviewed the high-level findings of the survey, discussed key themes, shared their own insights and ideas for how the Positive Voices should be analysed. The same participants were invited to attend a follow-up workshop one month later where further analyses based on the first workshop were shared alongside personal experiences. The participants created broad themes based on their stories and drawing from the Positive Voices findings which have formed the bases for the reports.  Ideas for potential audiences for the project findings and how the information should be shared were also discussed during the workshops.


Two further workshops were held with a further 10 individuals, one with black African men and women and one women only workshop to ensure that there was strong representation of a broad range of people and to identify specific themes for these groups outside of the larger stakeholder group meetings. 


Participants agreed that other people living with HIV should be able to engage with the Positive Voices findings, as should key decision makers and people who could use the findings to make things better for others. To this end, many people who attended these events shared their personal stories to bring the data to life. Some participants joined the project team, attending planning meetings, helping with analysis, drafting and design, and building the project website. These reports have been developed in partnership with the community and belong to the community.