Exploring how People with Spinal Cord Injuries Seek Support on Social Media
Tamanna Motahar, Sara Nurollahian, YeonJae Kim, Marina Kogan, Jason Wiese · 2024 · Proceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS) · doi:10.1145/3663548.3675628
Summary
This paper presents a content analysis of 960 post-threads from two SCI-specific subreddit communities (r/spinalcordinjuries and r/SpinalCordInjuries) to understand what topics people with spinal cord injuries discuss online and what types of support they seek and receive. Using the Social Support Behavioral Code (SSBC) framework, the researchers categorized support-seeking into five types: informational, emotional, tangible, esteem, and network support. The study employed both deductive coding based on the SSBC framework and inductive open coding to develop sub-themes within each support category. The analysis identified 39 life factors under 13 broad categories that people discuss online. Informational support seeking dominated, covering assistive logistics (wheelchair selection, vehicle modifications), motor functionality (spasticity, recovery expectations, pain management), newly acquired self-care activities (bowel and bladder management, skin care), and daily living activities (cooking, employment, sports, travel, intimacy). Emotional support seeking focused on gaining motivation, coping with depression and identity loss, and reconstructing self-identity after injury. The researchers found that support-seeking patterns persist regardless of injury level (tetraplegia versus paraplegia) or time since injury, challenging assumptions that support needs diminish over time. The study also examined how supporting individuals — partners, family members, and friends — use these platforms to seek information about helping their loved ones.
Key findings
The study found that informational support was the most commonly sought type, with 144 posts seeking information across four major categories. Comments on informational posts were largely helpful, with 25-35% providing relevant informational support and smaller percentages offering emotional support. Emotional support seeking was also significant, with 220 posts focused on motivation (206 posts) and identity reconstruction (54 posts). However, emotional support needs were often poorly met — among 54 posts seeking identity-related support, only 10 of 26 posters who received replies seemed satisfied. Many posters had to rephrase questions or stopped replying entirely. The research revealed that self-care activities generated the highest rate of informational support in comments (35%), while assistive logistics posts received the lowest (33% informational). Identity recreation was found to be significantly impacted by periodic changes in motor functionality, making it an ongoing process rather than a one-time adjustment. Supporting individuals showed distinct information-seeking patterns, primarily seeking information about assistive technologies to enhance the independence of persons with SCI. The text-based nature of Reddit communication may hinder emotional support provision.
Relevance
This research has significant implications for designing inclusive online support platforms for people with disabilities. The finding that emotional support needs are often unmet on social media platforms suggests opportunities for AI-supported comment prompts or better platform design to facilitate meaningful peer support. For accessibility practitioners, the study highlights that assistive technology adoption is a community-driven process where self-efficacy plays a crucial role — negative experiences with new technology can reduce confidence and adoption. The paper also demonstrates the value of social media data as a research method for understanding the lived experiences of hard-to-recruit populations. The emphasis on identity reconstruction as an ongoing, non-linear process challenges rehabilitation models that assume a fixed recovery timeline and has implications for how assistive technology services are designed and delivered over time.
Tags: spinal cord injury · social media · online support · peer support · Reddit · social support · content analysis · disability identity · assistive technology adoption