Despite generally positive relationships
with HIV clinic staff, men living with HIV in Sweden report that when it comes
to rules regarding disclosure and legal obligations, clinicians were not always
clear with patients regarding the meaning of undetectability and whether or not
they still needed to disclose or use condoms. Men often needed to seek out
other sources in order to find this crucial information, according to a recent
qualitative study published in AIDS Care
by Tobias Herder and Professor Anette Agardh at Lund University.
According to the Swedish Communicable
Diseases Act of 2004, HIV infection is classified as a public health hazard. It
stipulates that an HIV-positive individual needs to be given written rules of
conduct by the treating physician after diagnosis. These standardised rules
outline the patient’s obligations, including disclosure of HIV status to sexual
partners and using methods to minimise transmission, such as condoms.
In 2013, in accordance with results of the
HPTN
052 study, the National Board of Health and Welfare issued a
clarification that allowed physicians to exempt those with an undetectable
viral load from disclosing their status to sexual partners.
In June 2018 the Supreme Court acquitted an
HIV-positive man who did not disclose his status to his sexual partner. He was
charged with exposing his partner to the risk of serious illness. However, the
Court ruled that stable HIV treatment, with a maintained undetectable viral
load, leads to no risk of infection and therefore the man did not need to
disclose.
The study
The main aim of this qualitative research
was to explore experiences and perceptions regarding disclosure,
infectiousness, undetectability, obligations and how this information was
communicated to them. Researchers carried out ten in-depth interviews with men
who have sex with men between November 2017 and February 2018. Median age was
43.5 (range: 25-71) with 7.5 median years since diagnosis (range: 2-27). Four
men had received a disclosure exemption from their doctors, four had not and
the other two were unsure. Most participants (70%) were born in Sweden.
An overarching theme emerged from the
interviews: navigating between rules and reality. This theme was identified through
qualitative content analysis based on categories that emerged from the
interviews. This theme – and the primary finding from the study – indicated
that men living with HIV in Sweden needed to navigate the reality of living
with HIV while trying to incorporate rules given to them by clinicians into
their everyday lives. In certain instances, these rules were not clear or the
men were given contradictory information.
Supportive clinics and clinicians
Many participants expressed that clinics
were safe, supportive spaces and that they had a positive relationship with
clinicians, especially nurses. The men reported that they were able to request a
change in treating physician if they did not have a good relationship.
"In that sense I think
it’s great to have such a close relationship with both the physicians and
nurses. Because when we meet, we have fun. And they know me, they know the way
I am."
Taking responsibility for one’s knowledge and peer support
Participants revealed that information about HIV and rules about sexual
conduct were not always provided at clinics routinely. However, the men took it
upon themselves to find out necessary information and felt comfortable asking
clinicians when they were unsure. Some participants sensed reluctance on the
part of clinic staff to fully explain that undetectability equated to
uninfectiousness. The implied message was that men should continue using
condoms as a precaution.
"After multiple ifs
and buts [the nurse] finally explained the thing with low infectiousness. I
recently thought about this and it was very moralising. 'Well, don’t forget
that there is still a risk of transmission'. All I really wanted was a clear
answer. (…) But she hardly wanted to give me that information."
Men described accurate information
relating to undetectability as a welcome relief; it meant that they no longer
viewed themselves as infectious and could be more confident regarding sex. In
many instances, this information was acquired from peers, HIV organisations or the
academic literature, and not directly from clinics. The importance of peer
networks for information-sharing and support was emphasised by some participants.
"Because they are also
HIV positive, they know everything, they know what you are going through, they
know what you think and how you function."
"There was a security
within myself that the virus cannot be transmitted, and reasonably I should be
able to have sex on equal terms, as if I didn’t have the virus."
Finding ways to relate to different rules
While mandatory disclosure to sexual
partners and condom use were topics that all participants had discussed with
their doctors at the time of diagnosis, the manner in which the rules of
conduct were received, and their impact, differed among participants.
Some described it as an inherently
stigmatising and negative experience, with a sense of being treated like a
criminal. Others only vaguely recalled the discussion and cited their distress
regarding the diagnosis as a reason for not fully processing all the
information at the time.
“I believe it was
more, like, how can you survive? Will I work? I mean questions about life that
are bigger than the rules of conduct, more existential questions, I would say,
were important at that time."
"I think it is really bad that they don’t tell you this. Really bad."
Those who had received exemptions from the
obligation to disclose their HIV status had generally asked their doctors
directly. Some participants were not aware that they could be granted an
exemption.
Due to fear of criminal charges, some men
kept updated on court cases pertaining to HIV non-disclosure and based their
rules of conduct on rulings from these cases.
"As I have understood
it, a prosecutor would not move on with the investigation if the person is well
treated."
Inconsistent information leads to frustration
Participants expressed frustration at
receiving inconsistent information at clinics. Rules relating to condom use
were particularly vague, with some physicians stating that condoms did not need
to be used in long-term relationships when undetectable, while others stated
that condom use was always necessary. Terms such as ‘minimal risk’ or ‘very
little risk’ caused confusion and were not easily translated into real-life
instances. Participants felt that younger doctors were more likely able to
state unequivocally that undetectable equated to uninfectious, whereas older
doctors were much more hesitant to do so.
"There are quite
different responses. Even from the same unit, institution, the response depends
on who you talk to. As a person living with HIV I find this quite unpleasant."
"The newer ones that
come (…) Well, they are more like 'But, my goodness, you are not infectious
anymore!', or something like that, yes."
Conclusion
This study highlights the importance of
clear communication between healthcare providers and patients in a country
where prosecution for HIV non-disclosure is still a possibility. While many
participants expressed that HIV clinics were safe spaces and that they had
developed good relationships with staff, they also reported that there were
inconsistencies in the information they received pertaining to undetectability,
condom use and their disclosure obligations. Some were not even aware that they
could be exempt from disclosing.
Men needed to find ways of navigating the
Swedish rules and their lived realities, often relying on knowledge gained from
other, non-clinical, sources such as peers. Knowledge about being uninfectious
was welcomed as a relief for the men, but needs to be communicated more
directly, consistently and openly.
