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The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations March, 2018 Stigma - Illness - Mental health HIV , STDs - - Disability - Eating disorders - Sexual orientation - Homelessness

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The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

March, 2018

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Stigma

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

  • Illness
  • Mental health
  • HIV, STDs
  • Disability
  • Eating

disorders

  • Sexual orientation
  • Homelessness
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Stigma

› “Marks” among individuals that discredit them due to an

  • undesired- divergence from a

larger group’s understanding of what is ‘normal’, or what is ‘correct’. (Herek, 2014; Goffman, 1963) › It’s a social construct.

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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My Research

Technology HCI Research Methods Stigmatized Populations

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

Technology HCI Research Methods Stigmatized Populations

  • Illness
  • Mental health
  • HIV, STDs
  • Disability
  • Eating

disorders

  • Sexual orientation
  • Homelessness

My Research

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The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

Technology HCI Research Methods Stigmatized Populations FtF

  • Observations
  • Interviews
  • Focus groups
  • Photo Elicitation
  • Toolkits
  • Co-design
  • Participatory Design
  • ...
  • Treatment
  • Social support
  • Stigma coping

strategies

  • counselors
  • stigmatized
  • Medical condition
  • Mental health
  • HIV, STDs
  • Disability
  • Eating

disorders

  • Sexual orientation
  • Homelessness

My Research

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Social/Medical Science & People Living with HIV (PLH)

› Recruitment: › HIV-related organizations (e.g., Peterson, 2010; Reeves, 2000) › Clinics (e.g., Lester et al., 2010; Shet et al., 2010) › Data collection: › Surveys (e.g., Shet et al., 2010), interviews (e.g., Peterson, 2010; Reeves, 2000), focus groups (e.g., Lester et al., 2010)

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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Social/Medical Science & People Living with HIV (PLH)

› Recruitment: › HIV-related organizations (e.g., Peterson, 2010; Reeves, 2000) › Clinics (e.g., Lester et al., 2010; Shet et al., 2010) › Online: posts, website links in ads (e.g., Mo and Coulson, 2013;

Carballo-Dieguez et al., 2006; Rhodes et al., 2003)

› Data collection: › Surveys (e.g., Shet et al., 2010), interviews (e.g., Peterson, 2010; Reeves, 2000), focus groups (e.g., Lester et al., 2010) › Online: web-based surveys, online forums and interviews in chat rooms (e.g., Mo and Coulson, 2013, Rhodes et al., 2010; Coursarus

and Liu, 2009)

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Social/Medical Science & People Living with HIV (PLH)

› Recruitment: › HIV-related organizations (e.g., Peterson, 2010; Reeves, 2000) › Clinics (e.g., Lester et al., 2010; Shet et al., 2010) › Online: posts, website links in ads (e.g., Mo and Coulson, 2013;

Carballo-Dieguez et al., 2006; Rhodes et al., 2002)

› Data collection: › Surveys (e.g., Shet et al., 2010), interviews (e.g., Peterson, 2010; Reeves, 2000), focus groups (e.g., Lester et al., 2010) › Online: web-based surveys, online forums and interviews in chat rooms (e.g., Mo and Coulson, 2013, Rhodes et al., 2010; Coursarus

and Liu, 2009) Difficult, fewer people Easier, more people More error, more expensive Less error, less expensive

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HCI & People Living with HIV (PLH)

› Recruitment: › HIV-related organizations (e.g., Joshi et al., 2014; Ramanathan et

  • al. 2013)

› Clinics (e.g., Marcu et al., 2016) › Data collection: › Surveys, interviews (e.g., Joshi et al., 2014), focus groups (e.g., Ramanathan et al. 2013), participatory design

(e.g., Marcu et al., 2016) The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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HCI & People Living with HIV (PLH)

› Recruitment: › HIV-related organizations (e.g., Joshi et al., 2014; Ramanathan et

  • al. 2013)

› Clinics (e.g., Marcu et al., 2016) › Data collection: › Surveys, interviews (e.g., Joshi et al., 2014), focus groups (e.g., Ramanathan et al. 2013), participatory design

(e.g., Marcu et al., 2016)

But.. what about ONLINE methodology?

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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  • Analysis
  • Mixed

methods

  • Activities
  • Surveys
  • Focus groups
  • PD
  • Co-design
  • User testing
  • Personas
  • Chat

interviews

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

The ARC Method

ARC

  • Recruitment
  • Social Media
  • (MacLeod et al., 2016)
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Doing Research with PLH

USING THE ARC METHOD

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations (Maestre et al., 2018)

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ARC with PLH

(8 weeks) July - Aug 2017

  • Activities
  • W1. Intros (A1), Baseline

Survey (A2)

  • W2. Problem Ranking (A3)
  • W3. Photo Elicitation (A4)
  • W4. Focus group (A5)
  • W5: Co-design (A6)
  • W6&7: Mobile app (A7-8)
  • W8: Personas (A9), Debrief

survey (A10)

  • Analysis
  • Recruitment

Doing Research with PLH

USING THE ARC METHOD

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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ARC with PLH

(8 weeks) July - Aug 2017

  • Activities
  • W1. Intros (A1), Baseline

Survey (A2)

  • W2. Problem Ranking (A3)
  • W3. Photo Elicitation (A4)
  • W4. Focus group (A5)
  • W5: Co-design (A6)
  • W6&7: Mobile app (A7-8)
  • W8: Personas (A9), Debrief

survey (A10)

  • Analysis
  • Recruitment
  • Facebook

support groups

Doing Research with PLH

USING THE ARC METHOD

  • Keywords: “HIV Support”, “HIV”
  • > 1K members
  • Requests to join accepted by 4 groups
  • IRB documentation reviewed with admins
  • Recruitment post
  • Participants:
  • N=19 (11 men, 7 women, 1 queer),
  • 8 hetersex., 8 homosex., 3 bisexsual
  • 12 caucasians, 4 latinos, 2 Asians, 1 African
  • 13 US, 2 Philippines, Mexico, Kenya, South Africa,

and the UK.

  • Age: 18-60; years w/ HIV: 1-30 (avg. 20)
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ARC with PLH

(8 weeks) July - Aug 2017

  • Activities
  • W1. Intros (A1), Baseline

Survey (A2)

  • W2. Problem Ranking (A3)
  • W3. Photo Elicitation (A4)
  • W4. Focus group (A5)
  • W5: Co-design (A6)
  • W6&7: Mobile app (A7-8)
  • W8: Personas (A9), Debrief

survey (A10)

  • Analysis
  • Participation &

engagement

  • Preferred

activities

  • Recruitment
  • Facebook

support groups

  • Keywords: “HIV Support”, “HIV”
  • > 1K members
  • Requests to join accepted by 4 groups
  • IRB documentation reviewed with admins
  • Recruitment post
  • 19 participants (11 men, 7 women, 1 queer),
  • 8 hetersex., 8 homosex., 3 bisexsual
  • 12 caucasians, 4 latinos, 2 Asians, 1 African
  • 13 US, 2 Philippines, Mexico, Kenya, South

Africa, and the UK.

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

Doing Research with PLH

USING THE ARC METHOD Codes:

  • Participant feedback (positive or negative)
  • Progress of completion (complete, delay,

excuse/reason)

  • Clarification (seeking or provision)
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The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

Doing Research with PLH

USING THE ARC METHOD

  • Avg. 82 (s=31.3) comments per

week.

  • Introductions (w1), Photo elicitation

(w3), co-design (w5), mobile app (W6), and personas (w8) generated the most comments.

  • Interestingly, the focus group (w4)

did not generate a lot of comments.

“ ”- p2. “ ”- p11.

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Doing Research with PLH

USING THE ARC METHOD

  • Avg. 2 (s=1.3) days.
  • Activities that involved interacting

with materials (photo elicitation, mobile app feedback) were completed with the most delay.

  • Activities that involved surveys were

completed with the least delay.

“ ”- p15. “ ”- p7.

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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Doing Research with PLH

USING THE ARC METHOD

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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Doing Research with PLH

USING THE ARC METHOD

Current & Future Work

  • Data Triangulation

Prototype Design (medication adherence, stigma)

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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Doing Research with PLH

USING THE ARC METHOD

The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

Doing Research with PLH

USING THE ARC METHOD High response rate Little delay Sustained engagement

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The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

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.

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The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations

Thanks! Questions?

Juan Fernando Maestre jmaestre@indiana.edu PhD student

School of Informatics, Computing and Engineering

Indiana University