This blog post is based on the CSCW’20 paper authored by Juan F. Maestre, Patrycja Zdziarska, Aehong Min, Anna Baglione, Christina Chung, and Patrick C. Shih, which is available here. It will be presented at the ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW’20) on Monday Oct. 19th 2020 at 12:00pm (ET).
HIV-related Stigma Affects People Living with HIV more than HIV Itself
“I often say that it is no longer the virus that is killing us, we have treatment for that. There is another disease out there that is killing us. It’s called stigma!” — Olivia.
People living with HIV who have access to antiretroviral medication could lead healthy lives with lifespans no different than those of the general population. However, not all people living with HIV are linked to care and provided access to treatment. One of the key reasons people are not accessing proper care is due to the stigma associated with HIV in our society (also known as public HIV-related stigma) . Public HIV-related stigma can be enacted as discrimination, social rejection, or physical or verbal violence to someone living with HIV. Thus, people are not getting into treatment and accessing help and support from others because they are afraid of experiencing social rejection once others find out that they are living with HIV . In this sense, regardless of being in treatment for HIV or not, public HIV-related stigma can hinder the quality of life as it has been linked with psychological distress in the forms of depression and anxiety .
How Do People Living with HIV Use Technology to Cope?
We conducted a study which involved interactions in-person and remotely with nine and 27 people living with HIV, respectively. In addition, we completed interviews with eight social workers from an HIV support center. We wanted to find out the effects of public HIV-related stigma and whether participants used any type of coping strategies to manage the negative effects of stigma. We also wanted to know if participants used technology to help them in their cope with public HIV-related stigma.
Coping with Public HIV-related Stigma can be Challenging
The main types of coping strategies used by participants was a combination of disclosure and non-disclosure of their HIV status and HIV-related experiences to others. On the one hand, not disclosing -or concealing- their HIV status allowed them to avoid any possibility of enactment of public HIV-related stigma like social rejection or discrimination. On the other hand, disclosing or telling others about their HIV status allowed them to get access to help and support from others which, in turn, helped them manage the effects of HIV-related stigma. In addition, disclosure of HIV to others helped in their efforts to advocate, educate, and normalize HIV as yet another chronic although highly manageable condition.
Thus, disclosure was regarded as a key coping strategy for those living with HIV. Yet participants experienced tensions around privacy, trust, intimacy, and access to social support at the moment of disclosing via social media, such as Facebook and Tumblr, which was the type of technology participants indicated they use to cope with stigma.
Disclosure Tensions around Privacy and Trust
“One thing people are still most concerned in social media with is the invasion of privacy. Who can see the posts? Could someone copy and repost somewhere else what others wrote with their names visible? In closed or even secret groups you can STILL screenshot and repost comments elsewhere. In developing new technology, that needs to be addressed too!” — Susana.
Participants used social media to disclose their HIV experiences to others and they often did so by using fake profiles. On the one hand, not using their real identities affected their opportunities to advocate and normalize HIV. On the other hand, those using their real identities experienced a lack of control over choosing who should be the target of their disclosures. Participants worried that they did not always know if there were other people lurking and observing their disclosures and interactions online. They also worried that people online could cut and paste their posts and share them with others without their consent.
How Could We Design for Safer Disclosure?
Social media platforms could further integrate affordances and functionality that could give users more control over who they disclose to, especially in the cases of people who they do not know very well. Visual signifiers could be integrated to help identify advocates and allies against HIV-related stigma. Additionally, a coaching mechanism could be activated once disclosure takes place so that the disclosure recipients can be informed on how to better support and help someone who is living with HIV. Finally, users could have more control over the persistence of data on social media by giving them the control to permanently delete their disclosures online or have the systems delete the data and make it untraceable after a determined amount of time.
Disclosure Tensions around Intimacy
“It happens pretty regularly when I’m on any type of online platform trying to hook up. You know I reveal my status and it becomes this gamble of if the person is going to be willing to engage or if they are against it… So, most of the apps have now migrated to a system where you can disclose your status and put it inside of your profile. I think that this has hurt more than it has helped.” — Jackson.
Participants used dating and sex social media apps like Grindr to meet others for dating and sexual purposes. Yet, they experienced tensions when using fields to disclose their HIV status on their profiles. When they disclosed that they are living with HIV via those fields, they helped normalize HIV and potentially filter out those who may enact public HIV-related stigma. However, by filtering out people with different views, they missed an opportunity to engage with those whose views on HIV could be changed if they were to receive educational material on HIV. Thus, this tension mainly arises due to the lack of control over the pace or progress of the disclosure of HIV status on platforms that utilize a simplistic text field to display this type of information.
How Could We Design to Aid Intimacy?
Like suggested in prior related research, disclosure of HIV status could come after the recipients of the disclosure have been exposed to educational material on HIV in order to potentially reduce enactments of public HIV-related stigma. In addition, these types of social media platforms could strengthen their efforts in regulating the use of stigmatizing language in users’ profiles like banning the use of expressions like DDF-UB2 (“disease & drug free, you be too”) in order to promote a culture of anti-stigmatization. Finally, as suggested earlier, visual signifiers (e.g., stigma-free badges ) could be used in order to identify users who potentially would not enact public HIV-related stigma in the forms of social rejection or verbal violence.
Disclosure Tensions around Social Support
“When I was still in the ’HIV closet’ in 2016 due to family bias and HIV stigma, my only outreach for support was private Facebook groups for people with HIV. I was afraid to go to support groups in person and be outed as having HIV. The ability to use a cellphone to reach out across the world and know I was NOT ALONE in this journey was priceless.” — Susana.
Disclosure is a key coping strategy to manage public HIV-related stigma because it allows people to access support from others. Yet, participants indicated that when joining support groups in person or online they could not always relate to others as the only trait or characteristic that they shared was that they were living with HIV. Thus, they expressed a need to be matched with others who had walked their path based on similar lived experiences as well as other traits such as gender, years living with HIV, age, etc. More importantly, those newly diagnosed expressed a need to be matched with others who could be their role models or mentors. Current social media platforms currently do not allow them to filter people for the purposes of this type of peer-to-peer social support.
How Could We Design to Help People Bond?
Visual signifiers could help identify users who are willing to provide support to others. These users could initiate the disclosure process and motivate others to disclose and exchange experiences. Support providers could also be provided with digital material (e.g., stigma toolkits) that could help them guide and mentor others about how to cope with the negative impact of public HIV-related stigma in their lives. Finally, researchers could explore the use of algorithm-assisted mechanisms to help match support peers by different traits such as gender, sexual orientation, years living with HIV, geographic location, etc.
Towards the Design of Customized Technology for HIV-related Stigma
Participants expressed that the design of technology should not just be focused on the creation of alarm-based apps that remind them when to take their next pill. Thus, technology to help them cope with HIV-related stigma is greatly needed. Of course, HIV-related stigma is a complex social phenomenon that cannot be solved or addressed through a singular solution. The ideas for technology design presented here should be further explored with and assessed by people living with HIV. Ultimately, at the minimum, the use of technology should not replicate or exacerbate the negative effects of HIV-related stigma experienced in offline settings like social rejection or violence. In this sense, we exhort researchers and practitioners in the HCI and CSCW communities to co-design technology with this vulnerable population by taking into account their values and particular needs regarding the impact of stigma in their lives.We suggest using participatory design processes with people living with HIV in order to give them a stronger voice and control over the design process. More importantly, the design process of technology for stigma should not further stigmatize participants by using offensive language or by conducting research in spaces that do not assure confidentiality and privacy.
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