Defining Through Expansion: Conducting Asynchronous Remote - - PowerPoint PPT Presentation

Defining Through Expansion: Conducting Asynchronous Remote Communities (ARC) Research with Stigmatized Groups

April 25, 2018

Juan F. Maestre, Haley MacLeod, Ciabhan L. Connelly, Julia C. Dunbar, Jordan Beck, Katie A. Siek, Patrick C. Shih Website: ciabhanconnelly.com Email: ciaconne@iu.edu Twitter: @ConnellyCiabhan

This study was partially funded by the NSF Grant # CNS-1560267

Problem Space

Technological Interventions

HCI Research Methods Stigmatized Populations

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Technological Interventions

HCI Research Methods Stigmatized Populations

• Mental Illness
• HIV, STDs
• Disability
• Eating disorders
• Sexual orientation
• Homelessness

Problem Space

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Technological Interventions

HCI Research Methods Stigmatized Populations

Problem Space

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

• PLH: People

Living with HIV

Technological Interventions

HCI Research Methods Stigmatized Populations

• Challenging

to recruit for face to face methods

• PLH: People

Living with HIV

Problem Space

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

›

Recruitment

›

In-Person: HIV-related organizations, clinics (Lester et al., 2010;

Peterson, 2010; Reeves, 2000; Shet et al., 2010)

Research with People Living with HIV (PLH)

in Social/Medical Science

Difficult, fewer people

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

›

Recruitment

›

In-Person: HIV-related organizations, clinics (Lester et al., 2010;

Peterson, 2010; Reeves, 2000; Shet et al., 2010)

› Data collection

›

In-Person: Surveys, interviews, focus groups (Lester et al., 2010;

Peterson, 2010; Reeves, 2000; Shet et al., 2010)

Research with People Living with HIV (PLH)

in Social/Medical Science

Difficult, fewer people More error, more expensive

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

›

Recruitment

›

In-Person: HIV-related organizations, clinics (Lester et al., 2010;

Peterson, 2010; Reeves, 2000; Shet et al., 2010)

›

Online: forums, websites, social media (Carballo-Dieguez et al., 2006;

Iott et al., 2018; Mo and Coulson, 2013; Rhodes et al., 2002;)

› Data collection

›

In-Person: Surveys, interviews, focus groups (Lester et al., 2010;

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,

Rhodes et al., 2010)

Research with People Living with HIV (PLH)

in Social/Medical Science

Difficult, fewer people More error, more expensive Easier, more people Less error, less expensive

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

›

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)

Research with People Living with HIV (PLH)

in Human Computer Interaction

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

›

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)

Research with People Living with HIV (PLH)

in Human Computer Interaction

But.. what about ONLINE methodology?

ARC with PLH

(8 weeks) July - Aug 2017

Conducting Research with PLH

USING THE ARC METHOD (MacLeod et al., 2016)

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

ARC with PLH

(8 weeks) July - Aug 2017

Activities

• W1. Intros (A1), Baseline Survey (A2)
• W2. Problem Ranking (A3)
• W3. Photo Elicitation (A4)
• W4. Technology Circles (A5)
• W5: Co-design (A6)
• W6&7: Mobile app (A7-8)
• W8: Personas (A9), Debrief survey (A10)

Conducting Research with PLH

USING THE ARC METHOD

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

ARC with PLH

(8 weeks) July - Aug 2017

Activities

• W1. Intros (A1), Baseline Survey (A2)
• W2. Problem Ranking (A3)
• W3. Photo Elicitation (A4)
• W4. Technology Circles (A5)
• W5: Co-design (A6)
• W6&7: Mobile app (A7-8)
• W8: Personas (A9), Debrief survey (A10)

Conducting Research with PLH

USING THE ARC METHOD

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Alfred found out only a few weeks ago that he is living with HIV. When he

first found out, he was in a complete shock. He still feels lost and confused. He is the only one that knows

• f his status because he is struggling to

figure out how to tell his friends and

• family. So far, his best resources have been

different websites, blogs and online forums where he’s been able to find information regarding HIV treatment and other people’s encouraging stories.He’s also read some good advice on how to bring up his new status to

• thers, 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, ...

ARC with PLH

(8 weeks) July - Aug 2017

Activities

• W1. Intros (A1), Baseline Survey (A2)
• W2. Problem Ranking (A3)
• W3. Photo Elicitation (A4)
• W4. Technology Circles (A5)
• W5: Co-design (A6)
• W6&7: Mobile app (A7-8)
• W8: Personas (A9), Debrief survey (A10)

Conducting Research with PLH

USING THE ARC METHOD

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

This week (week 5), we would like to discuss

ideas on what we could create in

• rder to address some of the

problems you mentioned you had in the

initial activities. Since the majority of you use a smartphone, how about we start talking about what kind of smartphone app we could create? Yet, if you would like to propose things other than an app, you can do so too! 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...

ARC with PLH

(8 weeks) July - Aug 2017

Activities

• W1. Intros (A1), Baseline Survey (A2)
• W2. Problem Ranking (A3)
• W3. Photo Elicitation (A4)
• W4. Technology Circles (A5)
• W5: Co-design (A6)
• W6&7: Mobile app (A7-8)
• W8: Personas (A9), Debrief survey (A10)

Conducting Research with PLH

USING THE ARC METHOD

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Today we are going to begin the week 6 activity which is introducing you all to the

TreatYoSelf app and receiving feedback on it through a series of guided questions. The TreatYoSelf app

was developed by a team of researchers at Drexel University in Philadelphia, Pennsylvania. The idea was to create a discrete yet user-friendly app to help assist people living with HIV. Attached in this post is the TreatYoSelf video we 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

• f 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)....

ARC with PLH

(8 weeks) July - Aug 2017

Activities

• W1. Intros (A1), Baseline Survey (A2)
• W2. Problem Ranking (A3)
• W3. Photo Elicitation (A4)
• W4. Technology Circles (A5)
• W5: Co-design (A6)
• W6&7: Mobile app (A7-8)
• W8: Personas (A9), Debrief survey (A10)

Conducting Research with PLH

USING THE ARC METHOD

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Recruitment

• Facebook support groups

Participants (N=19)

• 11 men, 7 women, 1 queer
• 8 hetersex., 8 homosex., 3 bisex.
• 12 Caucasian, 4 Latino, 2 Asian, 1

African

• 13 US, 2 Philippines, 1 Mexico, 1

Kenya, 1 South Africa, 1 UK.

• Age: 18-60
• Years w/ HIV: 1-30 (avg. 20)

ARC with PLH

(8 weeks) July - Aug 2017

Activities

• W1. Intros (A1), Baseline Survey (A2)
• W2. Problem Ranking (A3)
• W3. Photo Elicitation (A4)
• W4. Technology Circles (A5)
• W5: Co-design (A6)
• W6&7: Mobile app (A7-8)
• W8: Personas (A9), Debrief survey (A10)

Conducting Research with PLH

USING THE ARC METHOD

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Recruitment

• Facebook support groups

Analysis

• Participation & engagement
• Preferred activities

Conducting Research with PLH

USING THE ARC METHOD

Participation & Engagement Completion Percentage

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Conducting Research with PLH

USING THE ARC METHOD

Participation & Engagement

“Crazy work week will get it done before Sunday .”- p15. “I’m having a disastrous week, some major personal problems going on right now. I will do my best to get it done for Sunday though .”- p7.

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Conducting Research with PLH

USING THE ARC METHOD

• Most Liked:
• Introductions
• Co-design
• Mobile app user testing
• Personas
• Least Liked:
• Problem ranking
• Technology circles

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Participation & Engagement

Conducting Research with PLH

USING THE ARC METHOD

Participation & Engagement

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Conducting Research with PLH

USING THE ARC METHOD

Participation & Engagement

“I found myself looking forward to the study week after week and feel like we built a family of support among the participants and study coordinators.”- p2. “Chicken Soup must live on!”- p11.

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Example of Lessons Confirmed from previous ARC studies

Conducting Research with PLH

USING THE ARC METHOD

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

• Encouraging participants to post directly to the group, even submissions

still in progress. Seeing other participant's contributions can give inspiration to people. (Lesson 4 from MacLeod et al., 2016)

• Researchers should be prepared to adopt multiple approaches to ensure

activities are seen by participants. (Lesson 7 from MacLeod et al., 2016)

• Providing opportunities for socialization between participants that are

separate from formal study activities. (Lesson 9 from MacLeod et al., 2016)

• Being mindful of the number of steps needed to complete an activity

(Lesson 12 from Prabhakar et al., 2017)

Conducting Research with PLH

USING THE ARC METHOD

New Lessons Learned

• Recruitment
• Support from group administrators was key!
• Informed consent
• Highlight risks of breach of confidentiality (FB platform)
• Use of FB Messenger

IRB documentation Recruitment Post Informed Consent

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

( researchers ) review ( group admins ) ( researchers ) ( researchers + participants )

Conducting Research with PLH

USING THE ARC METHOD

• Moderating the study
• Use of a code of

conduct

https://www.lollydaskal.com/leadership/codes-of-conduct-to-lead-by/

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

New Lessons Learned

Conducting Research with PLH

USING THE ARC METHOD

• Moderating the study
• Use of researchers’ real Facebook accounts

https://www.techgainer.com/stop-facebook-notifying-others-about-new-friend/

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

New Lessons Learned

Conducting Research with PLH

USING THE ARC METHOD

Towards a Definition of ARC

• ARC allows flexibility in term of:
• Platform choice
• Facebook has been the platform of choice, but future

research should try others (e.g., Tor, Whisper)

• Study length, sample size, activities and their frequency
• Depends on study goals and stage of design process

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Conducting Research with PLH

USING THE ARC METHOD

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Remote Collocated Asynchronous Community Online communities or forums Installations, in situ deployments Individual Surveys, remote deployments, photo elicitation, message exchanges, diary studies, etc. Installations, in situ deployments Synchronous Community Remote focus groups, netnography, group chats In-person focus groups, ethnography,

• bservations

Individual Remote interviews In-person interviews

Conducting Research with PLH

USING THE ARC METHOD

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Remote Collocated Asynchronous Community Online communities or forums Installations, in situ deployments Individual Surveys, remote deployments, photo elicitation, message exchanges, diary studies, etc. Installations, in situ deployments Synchronous Community Remote focus groups, netnography, group chats In-person focus groups, ethnography,

• bservations

Individual Remote interviews In-person interviews

Conducting Research with PLH

USING THE ARC METHOD

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Remote Collocated Asynchronous Community Online communities or forums Installations, in situ deployments Individual Surveys, remote deployments, photo elicitation, message exchanges, diary studies, etc. Installations, in situ deployments Synchronous Community Remote focus groups, netnography, group chats In-person focus groups, ethnography,

• bservations

Individual Remote interviews In-person interviews

• Limitations
• Sample
• Recruitment from Facebook groups
• Tech savvy?
• Stigma perceptions
• privacy/confidentiality
• Future work
• Recruit sample from a offline clinical setting and use ARC and compare

findings.

Conducting Research with PLH

USING THE ARC METHOD

Limitations and Future Work

• Data Triangulation

Prototype Design (medication adherence, stigma)

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

• ARC proved successful for conducting research with PLH
• Recruit geographically distributed people with HIV, with a mix of openness

about a stigmatized status

• High response rate
• Little delay
• Sustained engagement
• Two new design-focussed activities introduced
• Co-design
• Mobile app evaluation
• We have advanced towards a formal definition of ARC
• The study gave something back to study participants
• Online space is still being used for social support exchange.

Conducting Research with PLH

USING THE ARC METHOD

Conclusions

Intro Related Work Method Findings Lessons ARC Definition Limitations Conclusion

Website: ciabhanconnelly.com Email: ciaconne@iu.edu Twitter: @ConnellyCiabhan

Thanks!

Questions?

References:

• Buchanan, T., Joinson, A. N., Paine, C., & Reips, U. D. (2007). Looking for medical information on the Internet: self-disclosure, privacy and trust. He@lth Information on the Internet, 58(1), 8-9.
• Coursaris, C. K., & Liu, M. (2009). An analysis of social support exchanges in online HIV/AIDS self-help groups. Computers in Human Behavior, 25(4), 911-918.
• Goffman, E. (1963). Stigma: Notes on the management of a spoiled identity. Englewood Cliffs, NJ: Prentice-Hall.
• Herek G. HIV-related stigma. In: Corrigan P, editor. The Stigma of Disease and Disability: Understanding Causes and Overcoming Injustice. Washington, DC: American Psychological Association; 2014. pp. 121–138.
• Joshi, A., Rane, M., Roy, D., Emmadi, N., Srinivasan, P., Kumarasamy, N., ... & Sen, K. (2014, April). Supporting treatment of people living with HIV/AIDS in resource limited settings with IVRs. In Proceedings of the SIGCHI Conference on Human Factors in

Computing Systems (pp. 1595-1604). ACM.

• Lester, R. T., Ritvo, P., Mills, E. J., Kariri, A., Karanja, S., Chung, M. H., ... & Marra, C. A. (2010). Effects of a mobile phone short message service on antiretroviral treatment adherence in Kenya (WelTel Kenya1): a randomised trial. The Lancet, 376(9755),

1838-1845.

• Haley MacLeod, Ben Jelen, Annu Prabhakar, Lora Oehlberg, Katie Siek, and Kay Connelly. 2016. Asynchronous Remote Communities (ARC) for Researching Distributed Populations. In Proceedings of the 10th EAI International Conference on Pervasive

Computing Technologies for Healthcare (PervasiveHealth ’16). ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering), ICST, Brussels, Belgium, Belgium, 1–8.

• Juan F. Maestre, Haley MacLeod, Ciabhan Connelly, Julia Dunbar, Jordan Beck, Katie Siek and Patrick C. Shih (2018). Defining Through Expansion: Conducting Asynchronous Remote Communities (ARC) Research with Stigmatized Groups. In

Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems.

• Peterson, J. L. (2010). The challenges of seeking and receiving support for women living with HIV. Health Communication, 25(5), 470-479.
• Reeves, P. M. (2000). Coping in cyberspace: the impact of Internet use on the ability of HIV-positive individuals to deal with their illness. Journal of Health communication, 5(sup1), 47-59.
• Marcu, G., Dowshen, N., Saha, S., Sarreal, R. R., & Andalibi, N. (2016, May). TreatYoSelf: empathy-driven behavioral intervention for marginalized youth living with HIV. In Proceedings of the 10th EAI International Conference on Pervasive Computing

Technologies for Healthcare (pp. 69-76). ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering).

• Mo, P. K., & Coulson, N. S. (2013). Online support group use and psychological health for individuals living with HIV/AIDS. Patient Education and Counseling, 93(3), 426-432.
• Rains, S. A. (2014). The implications of stigma and anonymity for self-disclosure in health blogs. Health communication, 29(1), 23-31.
• Ramanathan, N., Swendeman, D., Comulada, W. S., Estrin, D., & Rotheram-Borus, M. J. (2013). Identifying preferences for mobile health applications for self-monitoring and self-management: Focus group findings from HIV-positive persons and young
• mothers. International journal of medical informatics, 82(4), e38-e46.
• Rhodes, S. D., Bowie, D. A., & Hergenrather, K. C. (2003). Collecting behavioural data using the world wide web: considerations for researchers. Journal of Epidemiology & Community Health, 57(1), 68-73.
• Rhodes, S. D., Hergenrather, K. C., Duncan, J., Vissman, A. T., Miller, C., Wilkin, A. M., ... & Eng, E. (2010). A pilot intervention utilizing Internet chat rooms to prevent HIV risk behaviors among men who have sex with men. Public Health Reports,

125(1_suppl), 29-37.

• Shet, A., Arumugam, K., Rodrigues, R., Rajagopalan, N., Shubha, K., Raj, T., ... & De Costa, A. (2010). Designing a mobile phone-based intervention to promote adherence to antiretroviral therapy in South India. AIDS and Behavior, 14(3), 716-720.
• Kang Zhao, John Yen, Greta Greer, Baojun Qiu, Prasenjit Mitra and Kenneth Portier. 2014. Finding influential users of online health communities: a new metric based on sentiment influence. Journal of the American Medical Informatics Association, 21,

e2 (2014), e212--e218.

Juan Fernando Maestre jmaestre@indiana.edu @juanfermaestre

School of Informatics, Computing and Engineering

Indiana University

Defining Through Expansion: Conducting Asynchronous Remote Communities (ARC) Research with Stigmatized Groups