PeDEL

Personal Data and Empowerment Lab

Using Online Social Spaces for Information Seeking and Identity Construction for People with Spinal Cord Injuries


Workshop Paper


Tamanna Motahar, Marina Kogan, Jason Wiese
CSCW '22 Workshop: Information-Seeking, Finding Identity: Exploring the Role of Online Health Information in Illness Experience , 2022

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APA   Click to copy
Motahar, T., Kogan, M., & Wiese, J. (2022). Using Online Social Spaces for Information Seeking and Identity Construction for People with Spinal Cord Injuries. CSCW '22 Workshop: Information-Seeking, Finding Identity: Exploring the Role of Online Health Information in Illness Experience .


Chicago/Turabian   Click to copy
Motahar, Tamanna, Marina Kogan, and Jason Wiese. Using Online Social Spaces for Information Seeking and Identity Construction for People with Spinal Cord Injuries. CSCW '22 Workshop: Information-Seeking, Finding Identity: Exploring the Role of Online Health Information in Illness Experience , 2022.


MLA   Click to copy
Motahar, Tamanna, et al. Using Online Social Spaces for Information Seeking and Identity Construction for People with Spinal Cord Injuries. CSCW '22 Workshop: Information-Seeking, Finding Identity: Exploring the Role of Online Health Information in Illness Experience , 2022.


BibTeX   Click to copy

@proceedings{tamanna2022a,
  title = {Using Online Social Spaces for Information Seeking and Identity Construction for People with Spinal Cord Injuries},
  year = {2022},
  organization = {CSCW  '22 Workshop: Information-Seeking, Finding Identity: Exploring the Role of Online Health Information in Illness Experience },
  author = {Motahar, Tamanna and Kogan, Marina and Wiese, Jason}
}

Individuals who sustain a Spinal Cord Injury (SCI) undergo abrupt changes in their functional abilities.
This traumatic incident has a heavy impact on their physical and mental health; it also affects
people’s lives and identity due to sudden physical disability and mobility restrictions (due to manual
or power wheelchair usage), and challenges people to cope with a wide variety of challenges relating to
the differences in their lives from pre- to post-injury. After sustaining an injury, people initially receive
treatment, including information on their body, self-care practices, and lifestyle considerations from clinicians,
therapists, and patient educators at rehabilitation hospital; however, SCI-specific healthcare and
professional support after the rehabilitation period can be difficult and sometimes impossible to access.

Online Social Spaces can Facilitate Information Exchange for People with an SCI: 
Online social spaces often facilitates people’s engagement in seeking information and creating identity after
significant life events including job loss, pregnancy loss, gender transition, relation breakups,
and death of loved ones. Prior research also shows that people with chronic conditions (e.g., cancer,
diabetes) have often used online social spaces for health-related discussions. Users benefit from
these platforms being free of physical or social status cues, and can connect with others easily, obtain
necessary health information, and make health-related decisions. Notably, after sustaining an SCI,
people’s amount of internet usage increases significantly. For instance, individuals more rely on
internet-based educational videos to build their health-management knowledge after an SCI. Therefore,
online social spaces might have significant potential to support these people with information seeking
which has not been explored yet.