Healthcare workers living with HIV have different motivations for disclosing or concealing their HIV status

Roger Pebody
Published: 10 November 2017

Nurses and other healthcare workers who are living with HIV have mixed reactions when they mention their HIV status to colleagues, according to a small Dutch study reported in the November/December issue of the Journal of the Association of Nurses in AIDS Care. Some healthcare workers disclosed because they expected a positive reaction or they felt the need to share a secret. Others concealed their HIV status because they feared a negative reaction or did not believe that disclosure was relevant or necessary.

Many people with HIV discuss their HIV status with partners, friends and family, but conceal it with employers and colleagues. Moreover, there can be particular difficulties for people working in healthcare, because of anxieties about infection control. Nonetheless, Sarah Stutterheim found that all previous studies investigating the experiences of healthcare providers with HIV were conducted in sub-Saharan Africa, with none from a European context.

She recruited ten healthcare workers living with HIV by placing an advertisement on the Dutch HIV Association’s website and through snowball sampling. The participants took part in face-to-face interviews in 2011 and 2012.

Six were nurses, three were nursing assistants and one was a pharmacist. Workplace settings were varied – general hospitals, a psychiatric hospital, nursing homes for the elderly, a group home for people with disabilities and a pharmacy.

Nine participants were gay men and one was a heterosexual woman. All were Dutch. Their mean age was 46 and they had been diagnosed for a mean of nine years.

Disclosing or concealing

Three participants reported making a conscious choice to be open about their HIV at work. Two others said they did not explicitly hide their HIV status, but were not particularly open about it either. As one of them said:

‘‘I would never deny it if people were to ask but I wouldn’t go up to my new colleagues and say, ‘I have to tell you something: I have HIV.’’’

Two interviewees had made a conscious decision to conceal their HIV status. A further three had previously been open at work, but were not anymore.

The motivations of those who chose to disclose at work varied. Some felt that it would be cathartic.

‘‘It felt like the more open I was about it, the more I felt set free, and I became happier by, by just sharing it.’’

Others expected the reaction to be positive.

‘‘I don’t feel like hiding it at work... We have lots of clients with HIV so it’s pretty normal.’’

‘‘There was another guy in my department who was also HIV positive and he was open about it so I knew that it was a safe environment for me to talk about it.’’

Others felt that by being proactive, they could prevent future problems:

‘‘So that all my colleagues would hear it from me, to prevent it from spreading through the hospital as gossip.’’

In contrast, half the participants were concealing their HIV status at work at the time of the interview. A key motivation for this was that they expected negative reactions or stigma, often because they had previously experienced this themselves or had seen it occur in relation to other people.

“I’m not going to tell them anymore because I’m, yeah, I’m scared of how my colleagues will react. And where does this come from? It comes from, for example, the fact that whenever a patient is admitted and he has HIV, then they immediately say, ‘You need to be careful, eh? He has HIV so be extra careful’.”

One nurse said that he no longer discussed his status because of a “horribly disastrous” experience with a former employer.

“I was basically removed from my position there. I was allowed to stay in the department but I wasn’t allowed to do any patient treatment or activities anymore, so basically it became an administrative job.”

A very different reason not to disclose HIV status relates to the normalisation of HIV – participants did not see the relevance or necessity of discussing HIV with colleagues.

“Who am I accountable to? Accountability: what a word, eh? I mean do I really have to automatically tell them everything about me? If I have something, do I immediately have to tell my colleagues, I have this or that? No, I don’t.”

“I haven’t told anyone there. I’ve gotten to the point where, it’s part and parcel and, I don’t need – I don’t feel the need to talk about, to tell people. I no longer have that need to talk about it with everyone.”

Those who hid their status said that concealment could sometimes be difficult. They reported fears of being discovered, for example when colleagues saw them taking medication or if they had periods of sickness.

“You only realize after the fact just how much energy it costs to live with a secret and that’s especially the case when things start to shift and they get complicated because there comes a point when you can’t remember who you’ve told and who you haven’t told.”

Reactions to disclosure

Many participants had had positive reactions to disclosure. Some colleagues and managers responded with interest, support and empathy. Very often, those disclosed to saw the participant’s HIV status as a non-issue.

“Basically, it was like there was a peak but that peak came and went really fast. So, what it comes down to is that, in the beginning, it was talked about and thought about a lot but that was, at a given moment, gone and nobody gave it anymore thought.”

Other interviewees noted with satisfaction that their confidentiality had been maintained.

A few participants had experienced negative reactions, including management wanting to reassign duties or inform colleagues about the person’s status.

“She [team leader] wanted to inform human resources and the management about my HIV status because I was a risk to the department for both patients and my colleagues. And I tried to explain that HIV can’t be transmitted in normal social contact, but she wasn’t so sure of that. And I told her that she couldn’t do that, that she couldn’t simply decide to tell others that I’m HIV-positive because it violates privacy laws. And she just got really angry. She said to me, ‘Well, I believe, in this situation, you are in no position to make demands’.”

Some said they were gossiped about or found it difficult to find new work. Experiences like these had a substantial negative impact.

“It hit me like a bomb. I was totally floored… I was very emotional and I couldn’t put it in perspective.”

“I felt down. I felt really small.”

Some confronted colleagues with accurate information (for example about infection risks), some distanced themselves by attributing the reaction to ignorance, others sought support from colleagues – and two of the ten respondents decided to find work elsewhere.

Recommendations

Sarah Stutterheim and colleagues suggest the development of specialised counselling services for employees with HIV which could help with disclosure decisions. Such services should emphasise that disclosure is a choice. They should help employees to explore their motivations for disclosure (or concealment) and the potential reactions if they do disclose. The authors comment that while disclosure can be beneficial if it results in social support or reduces psychological stress, it may sometimes be more advantageous to conceal at work, especially when the risks are great and social support is available elsewhere.

This kind of counselling should include role-play, to help people prepare for disclosure and dealing with negative reactions. It should also focus on developing coping skills and building resilience.

Meanwhile, health care organisations should make workplaces safe for people living with HIV through inclusive workplace policies and structures, initiatives that increase HIV knowledge, and efforts to enhance contact between people living with HIV and others.  

Reference

Stutterheim SE et al. HIV status disclosure in the workplace: Positive and stigmatizing experiences of health care workers living with HIV. Journal of the Association of Nurses in AIDS Care 28: 923-937, 2017.

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