Tessa Eagle

Tessa Eagle

UX Researcher and HCI PhD interested in Digital Health

Digital Ethnography of ADHD Social Media

Background

Project Year: 2021 - 2023
Full Paper

Objective and Motivation

  • Adult ADHD and ADHD presentation in gender and racially-diverse populations is understudied
  • Neurodivergence is understudied within HCI
  • Technology designed for disabled and ND populations has been historically ableist

Research Question

How does the ADHD community leverage existing social media platforms to provide support previously contained within domain-specific online health communities?

Methods

  • Digital Ethnography of ADHD content (photo/video posts, comments/replies) and communities on TikTok, Twitter, and Instagram
  • Collection and observation Summer 2021 - Winter 2022
  • Coded data inductively

Main Themes

  • Discovering ADHD and Navigating Diagnosis
  • Navigating a Neurotypical World
  • Finding Acceptance and Validation

Model of online health communities. Traditional OHCs: A newly diagnosed person seeks information online. They find existing communities via Google, Facebook, and Reddit. They get education, support, validation, and resources. Unbounded online health communities: An undignosed person scrolls daily on TikTok. They start seeing content about ADHD, relating to content and reframing their past experiences. They then can use the info/strategies, self-diagnose, seek formal diagnoses, and get support.

Proposal: conceptualizing these integrated OHC on open social media platforms as the “Unbounded Online Health Communities’’

  • Traditional OHCs provide isolated health-related support and are domain-specific
  • Unbounded OHCs = Communities that live on open, algorithmically-driven social media platforms
  • Broadens potential membership reach!

Considerations

  • Broaden recruitment to include individuals with self-diagnoses and those traditionally excluded from ADHD research
  • Consider how to facilitate and promote knowledge sharing outside of medical contexts
  • Continual calls to design with neurodivergent communities and listen to what they need