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 The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
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
My Research Stigmatized Populations HCI Research Methods Technology The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
My Research - Illness - Mental health Stigmatized HIV , STDs - Populations - Disability - Eating HCI disorders Research - Sexual orientation Methods - Homelessness Technology The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
My Research - Medical condition FtF - Mental health - Observations Stigmatized HIV , STDs - - Interviews Populations - Focus groups - Disability - Photo Elicitation - Eating HCI - Toolkits disorders Research - Co-design - Sexual orientation Methods - Participatory Design - Homelessness - ... Technology - counselors - Treatment - stigmatized - Social support - Stigma coping strategies The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
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
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)
Social/Medical Science & People Living with HIV (PLH) › Recruitment: › HIV-related organizations (e.g., Peterson, 2010; Reeves, 2000) Difficult, fewer › Clinics (e.g., Lester et al., 2010; Shet et al., 2010) people › Online: posts, website links in ads (e.g., Mo and Coulson, 2013; Easier, more people 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) , More error, more focus groups (e.g., Lester et al., 2010) expensive › Online: web-based surveys, online forums and Less error, less expensive interviews in chat rooms (e.g., Mo and Coulson, 2013, Rhodes et al., 2010; Coursarus and Liu, 2009)
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
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) But.. what about ONLINE methodology? › 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
The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
The ARC Method - (MacLeod et al., 2016) - - Activities - Analysis - Surveys - Mixed - Focus groups methods - PD - Co-design ARC - User testing - Personas - Chat interviews - Recruitment - Social Media The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
Doing Research with PLH USING THE ARC METHOD (Maestre et al., 2018) The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
Doing Research with PLH USING THE ARC METHOD - Activities - Analysis - W1. Intros (A1) , Baseline Survey (A2) ARC with - W2. Problem Ranking (A3) PLH - W3. Photo Elicitation (A4) (8 weeks) July - Aug - W4. Focus group (A5) 2017 - W5: Co-design (A6) - W6&7: Mobile app (A7-8) - W8: Personas (A9) , Debrief survey (A10) - Recruitment The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
Doing Research with PLH USING THE ARC METHOD - Activities - Analysis - W1. Intros (A1) , Baseline Survey (A2) ARC with - W2. Problem Ranking (A3) PLH - W3. Photo Elicitation (A4) (8 weeks) July - Aug - W4. Focus group (A5) 2017 - W5: Co-design (A6) - Keywords: “HIV Support”, “HIV” - > 1K members - W6&7: Mobile app (A7-8) - Requests to join accepted by 4 groups - W8: Personas (A9) , Debrief - IRB documentation reviewed with admins survey (A10) - Recruitment post - Participants: - Recruitment - N=19 (11 men, 7 women, 1 queer), - 8 hetersex., 8 homosex., 3 bisexsual - Facebook - 12 caucasians, 4 latinos, 2 Asians, 1 African support groups - 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 - Activities - Analysis - W1. Intros (A1) , Baseline - Participation & Survey (A2) engagement ARC with - W2. Problem Ranking (A3) - Preferred PLH - W3. Photo Elicitation (A4) activities (8 weeks) July - Aug - W4. Focus group (A5) 2017 - W5: Co-design (A6) Codes: - W6&7: Mobile app (A7-8) - Participant feedback (positive or negative) - W8: Personas (A9) , Debrief - Progress of completion (complete, delay, - Keywords: “HIV Support”, “HIV” excuse/reason) survey (A10) - > 1K members - Clarification (seeking or provision) - Requests to join accepted by 4 groups - Recruitment - IRB documentation reviewed with admins - Recruitment post - Facebook - 19 participants (11 men, 7 women, 1 queer), support groups - 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 - 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. The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
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
Doing Research with PLH USING THE ARC METHOD The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
Doing Research with PLH USING THE ARC METHOD Current & Future Work - Prototype Design (medication adherence, stigma) Data Triangulation The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
Doing Research with PLH USING THE ARC METHOD 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 The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
The Suitability of the Asynchronous Remote Communities (ARC) Method for Studying Stigmatized Populations
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