Research on the experiences in employment of people with HIV

While UK-based research on employment of people with HIV has been extremely limited, a study conducted by NAT (National AIDS Trust) and City University in London gives some insight into the issues faced.

The quantitative study examined HIV-positive gay men’s employment experiences.¹ They were employed in a diverse range of sectors and professions. Many respondents were in stable employment, with most having only one or two employers in the last five years. Most were satisfied with their work and there was no significant difference in employment satisfaction between the HIV-positive men and a group of HIV-negative men surveyed at the same time. Over half the respondents (58%) said that living with HIV had no impact on their working life at the moment.

Of those who reported an impact, the most common responses were to report feeling very tired (20%) and feeling very stressed or anxious (13%). One in ten (11%) said that side-effects from treatment were having an impact on their work.

Seventy per cent of gay men living with HIV had taken no HIV-related sickness days in the last twelve months. Moreover, there was no statistically significant difference in the number of sick days taken by HIV-positive and HIV-negative men. Only a third of men with HIV had made any changes to their working lives because of their HIV status, with the most common change being alterations to working hours.

On the other hand, initial diagnosis of HIV was a time when many respondents did report an impact on their working life: 42% reported stress or anxiety, 32% needed some time off and 28% were very tired. However, it is important to note that almost a third of respondents said that their initial diagnosis had no impact on their working life.

Sixty-two per cent of HIV-positive gay men had disclosed their HIV status to someone at work, but a far greater number had discussed their sexual orientation. For over three-quarters of these men, the response to the disclosure of their HIV status at work was generally positive. Those who did not disclose their HIV status most frequently said they simply saw no need to. However, fear of poor treatment at work (53%) or breaches of confidentiality (57%) were also important factors in why survey respondents chose not to disclose.

Moreover, a fifth of the men who had disclosed their HIV-positive status at work said they had experienced HIV discrimination (7% in a current job and 14% in a previous job). The two most commonly reported forms of discrimination were to perceive themselves as being treated differently or excluded, or to have their confidentiality breached. A total of 40% of those who had experienced discrimination in a previous job believed they had lost their job as a result.

Employment sector or size of employer did not affect whether the men in NAT’s survey were likely to have experienced discrimination. Respondents who felt their body showed some physical sign of living with HIV were more likely to report HIV-related discrimination.

Respondents were as likely to report discrimination related to their sexual orientation as discrimination linked to HIV. Moreover, other research with HIV-positive black Africans has highlighted racial discrimination too.² It is not always easy for a person to distinguish the different forms of discrimination that they may experience, especially when it concerns subtle forms of exclusion, ridicule or unequal treatment.

Two-thirds of the gay men with HIV surveyed said that they were aware of the Disability Discrimination Act (DDA), but more were aware of their rights around sexual orientation. Moreover, 30% of those who knew about the DDA were not aware of one of its key features - the entitlement to ask for reasonable adjustments (changes to enable people to continue with their employment, taking into account their medical condition).

Only a third of those who had experienced HIV-related discrimination had sought redress through official-complaint mechanisms or grievance procedures. Moreover, a third of these complaints were not resolved to the satisfaction of complainants.

When respondents to the survey were asked where they would turn to for help if they were to experience HIV-related discrimination at work, HIV-support organisations were by far the most commonly preferred source of help (60%).

Returning to reasonable adjustments, the most common requests were time off for clinic appointments, a change in hours worked and a change to start/finish times. Most employers (89%) fully or partially granted the adjustment, while 11% refused to do so.

As part of the same project, the researchers also conducted focus-group discussions with a more diverse mix of people with HIV, and these suggest that the points of similarity in the issues raised by the black Africans and the gay men were striking.²

Nonetheless, another study, carried out among HIV clinic attendees in East London did show that, in addition to HIV-related discrimination, other socio-economic inequalities shape people’s experiences with employment. The white gay male participants were more likely to be in employment than heterosexual black African men and women. More part-time working and financial problems were reported by Africans. Moreover, white gay men reported higher rates of disclosure to employers than either black African heterosexuals or gay men from minority ethnic backgrounds.³