I'm Juan Maestre from Indiana University.
I'll be talking about a paper titled, "Not Another Medication
Adherence App, Critical Reflections
on Addressing Public HIV-related Stigma Through Design."
In the US, 8 out of 10 HIV patients
report feeling HIV-related stigma.
Public HIV-related stigma is often
enacted in the forms of discrimination,
social rejection, and physical violence.
These enactments can have detrimental effects on physical
and psychological health.
People who are the target of this type of stigma
often experience depression and anxiety.
Moreover, public HIV-related stigma
can negatively affect access to proper treatment and support.
As individuals living with HIV, they
want to avoid disclosure of HIV status
for fear of social rejection.
We address the following research questions--
how do people living with HIV currently
cope with public HIV related stigma,
and how do they currently use technology
to help them cope with public HIV related stigma
in their daily lives?
We completed semi-structured interviews
with eight social workers and nine people
living with HIV from an HIV support center.
We also collected data related to ARC studies
with 27 people living with HIV.
The data was analyzed by a thematic analysis
with an inductive and theoretical approach.
I met with co-authors several times
to identify, revise, and group the codes into emerging
categories, as well as to triangulate the data
and further verify and refine salient themes.
We found that the most common coping strategies
used against public HIV-related stigma
were disclosing or not disclosing
about their HIV status or HIV-related experiences.
On the one hand, participants indicated
that disclosure of HIV status allowed
them to access social support.
On the other hand, non-disclosure of HIV status
allowed them to hide or conceal that they were living with HIV,
and thus avoid possible enactments
of public HIV-related stigma, like social rejection
or violence.
The participants reported employing social media
platforms to adopt and use these coping strategies.
However, we found that there were
tensions experienced at the moment of using
these coping strategies.
While disclosure can facilitate the seeking and provision
of social support, allow the normalization of HIV,
and promote the advocacy against HIV related stigma
by making people living with HIV more visible,
there is also a lack of control of how
the contents of their disclosures
may propagate or disseminate in social media platforms.
For instance, participants worried
that they didn't know who was reading their posts
and whether their disclosures could be copied and shared
elsewhere without their consent.
Participants also reported using social media
for dating purposes.
HIV status disclosure fields on such platforms
were employed as a way to advocate
against public HIV-related stigma,
as well as to filter users who may possibly
enact public HIV-related stigma in the forms of verbal violence
or rejection.
However, disclosing that they were living with HIV
by using HIV status fields did not
allow them to control the timing of such a disclosure.
In fact, HIV status disclosure fields
may constitute a missed advocacy opportunity
to decrease the negative perceptions about HIV.
For instance, few participants argued
that they wished that they could prepare
the recipients of their disclosures
with appropriate educational material regarding HIV.
Finally, there were also tensions
around the exchange of social support and online platforms.
Participants mentioned that they often
can bond with others living with HIV, thus,
they asked for systems that would
allow them to be matched with mentors based
not only on similar lived experiences,
but also on other personal traits such as age, gender,
and sexual orientation.
Based on our findings, we will now discuss a few design
implications.
In order to promote safe disclosures,
we argue that we could explore enhancing disclosure
on social media by providing mechanisms that would allow
people living with HIV to identify
users who may hold negative views or positions on HIV.
Additionally, these mechanisms could provide information
on how to disclose HIV-related experiences.
Finally, customized platforms could
be designed so that they implement what [INAUDIBLE]
refers to forgetting or obscuring so that the data
disclosure information is not permanent and can disappear
after a predetermined amount of time.
To promote better experiences with intimacy,
online platforms could be designed
so that they make sure that users have been presented
to educational material about HIV
prior to HIV-related disclosures.
Also, we exert for stronger policies
that would monitor enactments of public HIV-related stigma
on these platforms, like the use of offensive and stigmatizing
language.
To promote better experiences with bonding,
we suggest the creation of customized technology
that will allow people living with HIV to match
with others who have lived similar HIV-related
experiences, and who could act as mentors to those who are
beginning their HIV journey.
This matching could be based on similar lived experiences, as
well as personal traits.
Additionally, measures could be provided
with stigma toolkits that have been found
to be effective in face to face settings
at the time of helping people cope
with public HIV-related stigma.
To conclude, we would like to advocate
for the exploration of technology
for HIV that moves beyond the medication [INAUDIBLE]
and focuses more on how to aid people
cope with public HIV-related stigma at the individual level.
Thank you.