A majority of people with HIV employed in the UK report that HIV has no impact on their working life at present, according to research conducted by City University on behalf of the National AIDS Trust. Although most of those who disclosed their HIV status at work had had a generally positive reaction, stigma and discrimination create more problems at work than ill-health. However, only a minority of people with HIV are fully aware of the provisions of the Disability Discrimination Act.
Although the quantitative findings only relate to gay and bisexual men living with HIV, the researchers also conducted focus group discussions with a more diverse mix of people with HIV, and they say that the points of similarity between the black Africans and the gay men were striking.
Previous research in other countries has identified barriers to employment for people with HIV, and levels of employment tend to be lower than in the general population. However improved treatments mean that more people with HIV are able to remain in employment.
While the experiences of people working in the UK remain under-researched, a previous study among HIV clinic attendees in East London did identify that white gay men 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. White gay men reported higher rates of disclosure to employers than either black African heterosexuals or gay men from minority ethnic backgrounds.
The new research used focus groups to establish key themes. Three groups were held with black African heterosexuals, and two groups with gay and bisexual men (38 participants in total). Then, an online questionnaire was conducted with gay and bisexual men using the Gaydar website in order to quantify the insights of the focus groups. The researchers regret that there is no equivalent website which could be used to recruit a large convenience sample of black African people with HIV, and that other recruitment methods would have been too costly.
A total of 1830 HIV-positive gay male respondents took part in the online survey. (Moreover, some comparisons are made between these men and over 6000 HIV-negative gay men who also completed the survey.)
It’s important to note that the research only included people with current employment, and the experiences of those who are no longer working are likely to be different.
HIV-positive gay men taking part in the survey 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 between HIV-positive and HIV-negative men’s level of employment satisfaction.
Impact of HIV
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 12 months, and took no more sick days than HIV-negative men. Only a third 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. Forty-two per cent 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. There was some suggestion from focus group discussions that starting or changing medication was another ‘flash point’ when HIV had an impact on their working lives.
Disclosure of HIV status
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. Colleagues were as likely to be informed as a manager; fewer men had informed personnel or occupational health staff.
Respondents who had disclosed their HIV status were more likely to work in the public or not-for-profit sector than for private companies. Respondents who had disclosed were more likely to be taking HIV treatment, taking HIV treatment during working hours or feel that they showed some physical signs of living with HIV.
For over three-quarters of the HIV-positive men in this study (77%), the response to the disclosure of their HIV status at work was generally positive. Less than one in ten reported a negative response.
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. Three-quarters of respondents felt uncomfortable about being asked about their HIV status on pre-employment health questionnaires, and half of those who had been given such a form had not disclosed their HIV status.
A fifth of men who had disclosed their HIV-positive status at work had experienced HIV discrimination in a current or previous job (7% current; 14% previous). A similar proportion had experienced discrimination related to their sexual orientation.
The research asked respondents to describe the nature of the discrimination they had experienced. The two most commonly reported forms of discrimination were to perceive being treated differently or excluded or to have their confidentiality breached in relation to information about their HIV status. 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 men 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.
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 the complaints were not resolved to the satisfaction of respondents.
The survey asked respondents 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%).
Disability Discrimination Act
Since 2005, people with diagnosed HIV have had a legal recourse against discrimination in the workplace. 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 the 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).
Of those who had requested a ‘reasonable adjustment’, the most common requests were time off for clinic appointments (67%), a change in hours worked (52%) and a change to start/finish times (50%). Most employers (89%) fully or partially granted the adjustment, while 11% refused to do so.
The DDA makes provision for ‘disability leave’, in which employees can have time off work for reasons to do with the HIV status (this is recorded separately from sick leave). Although disability leave could be used to give time for clinic appointments, only 5% of respondents had used it for this purpose, suggesting that both employers and employees are unaware of this legal entitlement. In fact over a third of respondents had not taken any days off to attend their HIV clinic in the last 12 months, and almost half had used existing flexibility within their current working arrangements to attend their appointments.
The National AIDS Trust make a number of recommendations including:
- Employers have a specific policy that addresses HIV, incorporates it into diversity or disability training, and take proactive steps to raise awareness of HIV at work (e.g. by marking World AIDS Day).
- Employers understand their obligations under the Disability Discrimination Act 2005, the sorts of adjustments that people living with HIV may need in the workplace and the ease with which they can be accommodated.
- Government funds HIV support organisations to provide advice around employment, particularly given the recent increase in emphasis on keeping, or getting, disabled people back to work.
Moreover Deborah Jack, Chief Executive of the National AIDS Trust, commented: “The overall picture for people with HIV at work is a positive one. It is important for employers and HR professionals to realise that people with HIV can and do make valuable contributions to the UK workforce. Today, often it is not the health of people with HIV that affects their working ability but attitudes of employers or colleagues.
“A cultural change is needed in workplaces across the UK. Simple, proactive steps by employers to show they understand HIV and would be supportive of disclosure will have a dramatic effect on the working lives of people with HIV.”
Working with HIV: a summary of NAT’s HIV employment research. National AIDS Trust, 2009.
Douglas N I just get on with it… A study of the employment experiences of gay and bisexual men and black African men and women living with HIV in the UK. National AIDS Trust, 2009. (This is a more detailed report, including analysis of the focus groups).