Enhancing Epidemiologic Sampling Methods with Social Media
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Enhancing Epidemiologic Sampling Methods with Social Media

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Sean Arayasirikul of the San Francisco Health Department shares how theory-driven outreach and recruitment can be implemented to target trans female youth in the San Francisco Bay Area to participate ...

Sean Arayasirikul of the San Francisco Health Department shares how theory-driven outreach and recruitment can be implemented to target trans female youth in the San Francisco Bay Area to participate in research. Presented at YTH Live 2014 session "The New Face of Recruitment + Questionnaires."

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Enhancing Epidemiologic Sampling Methods with Social Media Enhancing Epidemiologic Sampling Methods with Social Media Presentation Transcript

  • Sean Arayasirikul, Victory Le, & Erin Wilson The SHINE Study www.theshinestudy.org Center for Public Health Research San Francisco Department of Public Health
  • ž  Sex = chromosmal and/or physically identifiable sex structures/reproductive organs assigned upon babies at birth (M/F/I) ž  Gender = the social attributes and opportunities associated with being women and men and girls and boys, as well as the relations between them. They are socially constructed and learned through socialization processes. ž  Transgender = individuals whose gender identity is discordant with their assigned sex at birth ž  Trans* = an inclusive notation for individuals who identify as transgender, gender non-conforming, non-binary, agender, assigned male/female at birth (AMAB/AFAB) ž  Cis-gender/cis-male/cis-female = to describe individuals whose gender identity is concordant with their assigned sex at birth
  • ž  Complex moral fork in the road à little transvisibility + transphobia = MORE violence
  • ž  Trans*female youth are among the most vulnerable for HIV acquisition ž  Transphobia has led to unequal access to education, employment and other economic resources. ž  Studies suggest that 1 in 5 trans*female youth were infected with HIV before 25 years of age (Wilson et al 2009; Garofalo et al 2006). ž  More than one third of adult trans*female women in San Francisco are HIV+ (SFDPH 2008). ž  No longitudinal data examining HIV risk and potential protective factors from early adolescence to adulthood.
  • ž  The first longitudinal study of HIV risk and resilience among trans*female youth (ages 16-24) in the San Francisco Bay Area ž  Funded by the National Institute of Mental Health ž  Over the course of one year, participants complete three behavioral epidemiologic surveys (@ Baseline, 6 Months, and 12 Months).
  • ž  5 – Year epidemiologic study ž  Year 1: Formative Phase ›  Conducted 6 focus groups with trans*female youth in the San Francisco Bay Area à informed instrument development ž  Years 2-3: Recruitment and Follow-Up (N=300) ›  Began as Respondent-Driven Sampling (RDS) ž  Years 4-5: Follow-Up and Dissemination ž  Online retention: Secret Facebook Group
  • ž  Respondent-Driven Sampling (RDS) ›  An effective epidemiolgic sampling method, particularly among “hidden populations” ž  RDS Assumptions ›  Centrality: birds of a feather flock together ž  Ideal RDS Chains
  • ž  Social Networks among trans*females ž  1/3 of sample = recruits; 2/3 seeds Social isolation Social competition
  • ž  A picture of the network of one SHINE Staff FB profile ›  Gephi and Namegenweb ›  Across selected attributes, including likes and comments among nodes in the network ›  340 friends,17 distinct networks ›  Largest network = 76 nodes, ›  Smallest network= 1; 11 solitary nodes
  • ž  2,839 FB friends ž  21 mutual friends ž  6 SHINE connections ž  2 actual referrals ž  Unmobilized Recruitment potential: 4
  • ž  1,919 FB friends ž  87 mutual friends ž  33 SHINE connections ž  2 actual referrals ž  Unmobilized Recruitment potential: 29
  • ž  DNK FB friends ž  78 mutual friends ž  22 SHINE connections ž  4 actual referrals ž  Unmobilized Recruitment Potential: 18
  • ž  In what ways do trans*female youth utilize social media and to what end? ž  Identify social media outreach methods and protocol that is platform-specific ž  Interactions vary from platform to platform (e.g. IRL network/“friend”- policing on FB; versus transactional tone of some dating sites)
  • Social Media Platform Purpose transgenderdate.com Dating – trans*specific tsdating.com Dating – trans*specific myredbook.com Dating – trans*specific craigslist.com Dating – trans*specific Grindr, Blendr, Scruff Dating – geospatial mobile apps OkCupid Dating Tumblr Community Building Facebook Community Building Youtube Community Building
  • ž  Diverse representation on staff ž  Creating a spark message and profile that is authentic, direct, informative and engaging - not deceptive. ž  Develop search methodology ž  Implement outreach on a routine schedule (e.g. every Monday, every hour, varying geographic boundaries Search Terms Transgender Transexual/Transsexual Transvestite Transfemale Tranny Trans Male-to-Female MTF/M2F Ladyboy Androgynous Genderfluid/Genderqueer Tgirl/TG
  • ž  Develop a rapid share viral campaign to raise awareness - #SHINElikeUS (play on #girlslikeus) ž  Identify platform champions (SHINE seeds, superstars, popular opinion leaders, etc.) ž  Start a study-related online, life, be available.
  • ž  Friend connections (“People I May Know) ž  Pre- and Post-Transition photos ž  Group membership ž  Likes, Interests, iconography ž  Discordant names (embedded URL name, display name, etc.) ž  JUST ASK! … and be prepared to be shut down!
  • 0 10 20 30 40 50 60 70 2012 Q4 2013 Q1 2013 Q2 2013 Q3 2013 Q4 2014 Q1 2014 Q2 Avg. # of participants/ week: 4-5 Avg. # of participants/ week: 2-3 Recruitment goal reached!
  • ž  Language shifts, characterizing gender ž  Ethical concerns due to (over)exposure to participants’ social media lives ž  Platform-specific spamming precautions and IRL network/“friend” policing ž  Clocking
  • ž  By trans*female, we mean any individual assigned male sex at birth (AMAB) who identifies with any other gender other than male. ž  Some of the gender language commonly used in communities are: ›  Transgender woman; female; trans* ›  AMAB and identifies anywhere along the trans* feminine spectrum; ›  AMAB and identifies feminine of center ž  How do gender researchers keep up with the fast-pace of evolution of gender markers and identifications?
  • ž  Cyber Bullying
  • ž  Study profiles were blocked numerous times across all platform types ž  Facebook blocks lasted anywhere from 7-30 days, sometimes requiring the user to match names with faces in order to be unblocked.
  • ž  “Clocking” is a term to refer to identifying an individual’s trans*gender identity ž  No one wants their gender identity and presentation (or “illusion”) to be clocked ž  Accept that clocking is uncomfortable for all parties involved ž  Prepare to apologize, redirect, listen, and be educated. Be an Ally! ž  Don’t assume; just ASK!
  • ž  Social Media is now – it hits fast and hard ›  Regular team debriefs; protocols evolve; social media footprints (dis)appear ž  Understand platform-specific native functions ›  Not all platforms are created equal! ž  Don’t get lost – leave breadcrumbs! ›  Open windows as separate tabs; set daily SMART goals
  • ž  Embodying culture and the social world of young trans*females to foster rapport-building ›  Employ community members ›  Use in-culture language, iconography, social media ›  Multi-directional, constant interaction ž  Online relationships may need more TLC than those IRL ž  Social Media has complicated the public/ private divide à some police their privacy to the nth degree ž  Accept that social media is public
  • ž  Keep in touch with The SHINE Study! ›  www.theshinestudy.org ›  Twitter: @TheSHINEstudy ›  Facebook: /TheShineStudy ›  Instagram: ž  Keep in touch with Sean! ›  Sean.Arayasirikul@gmail.com ›  Twitter: @DirtySociology
  • ž  The National Institute of Mental Health ž  ALL SHINE Participants and Stakeholders ž  YOU! (and everyone in this audience!) ž  YTH 2014 and Company! ž  The SHINE Team: ›  Victory Le, Marla Fisher, Andres Pomart, Lexi Adsit ž  The SHINE PIs: ›  Drs. Wilson, McFarland, Raymond, and Auerswald