Using technology to support health among people with HIV: Can social media enhance the reach and effectiveness of a photo-stories project to improve HIV medication adherence?

Background

Increasing evidence supports social media as a cost effective, engaging, and accessible way to deliver health behavior messages. Although growing numbers of people with HIV (PWH) report using computers, mobile phones, and online social network sites, very few HIV interventions capitalize on the potential benefits of social media. We explored the feasibility and acceptability of conducting Snapshots of Adherence (Snapshots), a photo-stories project designed to enhance adherence to life-saving medications among people with HIV through enhanced education and motivation, via social media instead of in person meetings and clinic presentations.

Methods

In the Snapshots Project, 16 PWH created medication adherence posters to educate other patients who came to their clinic. They created the posters with photo-stories, personal images and narratives of their own HIV and adherence experiences. Participants’ photos were varied and included adherence reminders and organizers, adherence motivators like supportive things or people, and symbols of hope and healthfulness. Accompanying stories focused on adherence successes and challenges and advice for others struggling or celebrating similar behaviors. Participants choose photo-stories to be used and displayed in ten different adherence education posters in their clinic. We conducted post project interviews with a sample of participants who made and viewed the materials in the clinic (N=25) and assessed the feasibility and acceptability of a social media approach with questions such as “Describe your computer use.” “How do you use social media?” “How would you feel about sharing your story with HIV on social media?” and “What would be the plusses and minuses to viewing these adherence photo-stories online?”  We analyzed interview transcripts for key concepts using strategies of theme analysis.     

Results

Many interview participants were enthusiastic about both sharing their photo-stories and being educated by others’ stories through social media. They commended social media’s ability to connect people with HIV to each other, disseminate HIV adherence photo- stories widely, reach and educate people without HIV about the illness to decrease stigma, and support a diverse group of people with HIV to adhere to their medicines, particularly youth – who were assumed to communicate more regularly on social media.  As one participant noted, “It would be very uplifting to share these stories [on social media]. They are powerful images of hope out there for people who struggle…And not just for this clinic, but nationwide. That would be a beautiful thing.” Although they were a minority of participants, a few people did report notable barriers to conducting Snapshots and other HIV projects via social media, expressing that “computers intimidate me” and citing worries about identity and HIV disclosure.

Discussion and Conclusion

Positive comments about conducting Snapshots through social media outweighed the barriers.  For this project in particular participants were interested in how social media could disseminate photo-stories and accompanying information more widely than clinic displays alone. Versus in-person projects, social media can also connect and expand PWH’s information and support networks and reach people who may not be able to come into the clinic to obtain education or information. Barriers such as lack of computer knowledge and privacy concerns could be addressed by computer tutorials and computer access in clinics and helping patients to navigate how to share and receive information online without disclosing their identity.  Social media is particularly well suited to share both pictures and stories. Further research is warranted to develop Snapshots and other HIV education strategies online with social media to enhance reach and effectiveness.