Health Literacy and Online Support Group

Heather Haberman
Family Social Science Department

Accessing health-related information has never been easier than in the current “information age.” Indeed, t he Internet is a popular tool for gathering health information. According to a 2003 study, the Pew Internet & American Life Project, about 93 million Americans have searched online for health information, making it one of the most popular online activities for 80% of adult Internet users (Fox & Fallows, 2003). However, access to information does not immediately transfer to understanding, particularly as health-care and the science behind it become more and more complex—a finding made evident in a recent Institute of Medicine report, which states that almost “half of all American adults—90 million people—have difficulty understanding and acting upon health information” (IOM, 2004, p.1).

Prior research has established that online chat communities provide much needed support for their users (Perron, 2002; White & Dorman, 2000). Several studies regarding online support or self-help groups have found that participants engage in socio-emotional exchanges, emotional support, information sharing, and self-disclosure (Salem, Bogar, & Reid, 1997; Finn, 1999; White & Dorman, 2000). Our study will focus on the nature of the support (obtaining, interpreting, or understanding information) and its relationship to the health literacy levels (functional, interactive, and critical) of our group participants.

The individual and social factors of health literacy for 10 participants of an Alzheimer caregiver online support group were examined using discourse analysis (Patton, 2002). Health literacy “emerges when the expectations, preferences, and skills of individuals seeking health information and services meet the expectations, preferences, and skills of those providing information and services” (IOM, 2004, p.2). The online support group provided a setting with an ideal mix of these social and individual dynamics.

We expect to find individuals belonging to online chat groups demonstrating higher rates of health literacy in accordance with the level of support they are receiving from their chat group. Information derived from discourse between chat room participants should provide professionals a better understanding of what literacy behaviors are necessary for people to obtain, interpret, and understand Alzheimer’s-related information. We expect communication between health professionals and caregivers to increase as level of health literacy increases.

References

Finn, J. (1999). An exploration of helping processes in an online self-help group focusing on issues of disability. Health & Social Work, 24(3), 220-231.

Fox, S. & Fallows, D. (2003). Internet health resources. Washington, DC: Pew Internet & American Life Project. Washington, DC: Pew.

Institute of Medicine. (2004). Health literacy: a prescription to end confusion. Washington, D.C.: National Academies Press.

Patton, M.Q. (2002). Qualitative research & evaluation methods. Thousand Oaks, California: Sage.

Perron, B. (2002). Online support for caregivers of people with mental illness. Psychiatric Rehabilitation Journal, 26, 70-77.

Salem, D.A., Bogar, G.A., & Reid, C. (1997). Mutual help goes on-line. The Journal of Community Psychology, 25(2), 189-207.

White, M.H. & Dorman, S.M. (2000). Online support for caregivers: Analysis of an internet Alzheimer mailgroup. Computers in Nursing, 18(4), 168-179

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