Defining Through Expansion: Conducting Asynchronous Remote Communities (ARC) Research with Stigmatized Groups Juan F. Maestre, Haley MacLeod, Ciabhan L. Connelly , Julia C. Dunbar, Jordan Beck, Katie A. Siek, Patrick C. Shih April 25, 2018 Website: ciabhanconnelly.com Email: ciaconne@iu.edu Twitter: @ConnellyCiabhan This study was partially funded by the NSF Grant # CNS-1560267
Problem Space Stigmatized Populations HCI Research Methods Technological Interventions Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Problem Space - Mental Illness - HIV, STDs Stigmatized - Disability Populations - Eating disorders - Sexual orientation HCI - Homelessness Research Methods Technological Interventions Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Problem Space - PLH: People Living with HIV Stigmatized Populations HCI Research Methods Technological Interventions Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Problem Space - PLH: People - Challenging Living with HIV to recruit for Stigmatized face to face Populations methods HCI Research Methods Technological Interventions Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Research with People Living with HIV (PLH) in Social/Medical Science › Recruitment › In-Person: HIV-related organizations, clinics (Lester et al., 2010; Difficult, fewer people Peterson, 2010; Reeves, 2000; Shet et al., 2010) Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Research with People Living with HIV (PLH) in Social/Medical Science › Recruitment › In-Person: HIV-related organizations, clinics (Lester et al., 2010; Difficult, fewer people Peterson, 2010; Reeves, 2000; Shet et al., 2010) › Data collection › In-Person: Surveys, interviews, focus groups (Lester et al., 2010; More error, more expensive Peterson, 2010; Reeves, 2000; Shet et al., 2010) Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Research with People Living with HIV (PLH) in Social/Medical Science › Recruitment › In-Person: HIV-related organizations, clinics (Lester et al., 2010; Difficult, fewer people Peterson, 2010; Reeves, 2000; Shet et al., 2010) › Online : forums, websites, social media (Carballo-Dieguez et al., 2006; Easier, more people Iott et al., 2018; Mo and Coulson, 2013; Rhodes et al., 2002;) › Data collection › In-Person: Surveys, interviews, focus groups (Lester et al., 2010; More error, more expensive Peterson, 2010; Reeves, 2000; Shet et al., 2010) › Online : web-based surveys, content analysis, interviews in chat rooms (Coursarus and Liu, 2009; Mo and Coulson, 2013, Less error, less expensive Rhodes et al., 2010) Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Research with People Living with HIV (PLH) in Human Computer Interaction › Recruitment › HIV-related organizations, Clinics (Joshi et al., 2014; Marcu et al., 2016; Ramanathan et al. 2013) › Data collection › Surveys, interviews, focus groups , participatory design (Joshi et al., 2014; Marcu et al., 2016; Ramanathan et al. 2013) Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Research with People Living with HIV (PLH) in Human Computer Interaction › Recruitment › HIV-related organizations, Clinics (Joshi et al., 2014; Marcu et al., 2016; Ramanathan et al. 2013) But.. what about ONLINE methodology? › Data collection › Surveys, interviews, focus groups , participatory design (Joshi et al., 2014; Marcu et al., 2016; Ramanathan et al. 2013) Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Conducting Research with PLH USING THE ARC METHOD (MacLeod et al., 2016) ARC with PLH (8 weeks) July - Aug 2017 Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Conducting Research with PLH USING THE ARC METHOD Activities - W1. Intros (A1) , Baseline Survey (A2) ARC with - W2. Problem Ranking (A3) PLH - W3. Photo Elicitation (A4) (8 weeks) - W4. Technology Circles (A5) July - Aug - W5: Co-design (A6) 2017 - W6&7: Mobile app (A7-8) - W8: Personas (A9) , Debrief survey (A10) Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Conducting Research with PLH USING THE ARC METHOD Alfred found out only a few weeks ago that he is living with HIV. When he Activities first found out, he was in a complete shock. He still feels lost and confused. He is the only one that knows - W1. Intros (A1) , Baseline Survey (A2) of his status because he is struggling to ARC with - W2. Problem Ranking (A3) PLH figure out how to tell his friends and - W3. Photo Elicitation (A4) (8 weeks) - W4. Technology Circles (A5) family. So far, his best resources have been July - Aug - W5: Co-design (A6) 2017 different websites, blogs and online forums where he’s - W6&7: Mobile app (A7-8) been able to find information regarding HIV treatment - W8: Personas (A9) , Debrief survey (A10) and other people’s encouraging stories.He’s also read some good advice on how to bring up his new status to others, but hasn’t been able to summon the courage to do that yet. He’s afraid that the relationships with his family and friends will be affected negatively, ... Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Conducting Research with PLH This week (week 5), we would like to discuss USING THE ARC METHOD ideas on what we could create in order to address some of the Activities problems you mentioned you had in the - W1. Intros (A1) , Baseline Survey (A2) ARC with initial activities. Since the majority of you use a - W2. Problem Ranking (A3) PLH smartphone, how about we start talking about what - W3. Photo Elicitation (A4) (8 weeks) kind of smartphone app we could create? Yet, if you - W4. Technology Circles (A5) July - Aug would like to propose things other than an app, you - W5: Co-design (A6) 2017 can do so too! - W6&7: Mobile app (A7-8) - W8: Personas (A9) , Debrief survey (A10) For this activity, we will use the comment area of this post to show and discuss our ideas and proposals. You can also upload images, pictures or drawings in your comment in order to further explain an idea or thought... Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Conducting Research with PLH Today we are going to begin the week 6 activity USING THE ARC METHOD which is introducing you all to the TreatYoSelf app and receiving Activities feedback on it through a series of guided questions. The TreatYoSelf app - W1. Intros (A1) , Baseline Survey (A2) ARC with - W2. Problem Ranking (A3) was developed by a team of researchers at Drexel PLH - W3. Photo Elicitation (A4) University in Philadelphia, Pennsylvania. The idea (8 weeks) - W4. Technology Circles (A5) was to create a discrete yet user-friendly app to July - Aug - W5: Co-design (A6) help assist people living with HIV. 2017 - W6&7: Mobile app (A7-8) Attached in this post is the TreatYoSelf video we - W8: Personas (A9) , Debrief survey (A10) have created to introduce you all to the app and along with this video we will be posting a series of guided questions in regards to the app. The video of the app will be directly integrated in this post, while our series of guided questions will be in the comment section of the post (please reply to our comment directly to make the posts less hectic and muddled).... Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Conducting Research with PLH USING THE ARC METHOD Activities Recruitment - Facebook support groups - W1. Intros (A1) , Baseline Survey (A2) ARC with - W2. Problem Ranking (A3) PLH - W3. Photo Elicitation (A4) Participants (N=19) (8 weeks) - W4. Technology Circles (A5) - 11 men, 7 women, 1 queer July - Aug - W5: Co-design (A6) - 8 hetersex., 8 homosex., 3 bisex. 2017 - W6&7: Mobile app (A7-8) - 12 Caucasian, 4 Latino, 2 Asian, 1 - W8: Personas (A9) , Debrief survey (A10) African - 13 US, 2 Philippines, 1 Mexico, 1 Kenya, 1 South Africa, 1 UK. - Age: 18-60 - Years w/ HIV: 1-30 (avg. 20) Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Conducting Research with PLH USING THE ARC METHOD Activities Recruitment - Facebook support groups - W1. Intros (A1) , Baseline Survey (A2) ARC with - W2. Problem Ranking (A3) PLH - W3. Photo Elicitation (A4) (8 weeks) - W4. Technology Circles (A5) July - Aug - W5: Co-design (A6) 2017 - W6&7: Mobile app (A7-8) - W8: Personas (A9) , Debrief survey (A10) Analysis - Participation & engagement - Preferred activities Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
Conducting Research with PLH USING THE ARC METHOD Participation & Engagement Completion Percentage Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion
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