BACKGROUND
Rare diseases with symptoms that include chronic pain present a challenge for patients and providers to manage. Lack of experience with rare diseases may result in clinicians relying on general pain management strategies such as narcotics in circumstances where alternative forms of pain support may be available.
OBJECTIVE
In this research, we examine how patients extract information, and receive emotional support, through the use of an online support group. We develop a model to describe factors that both enhance and constrain the use of online support groups to engage with patients.
METHODS
This study uses path analysis to examine survey data related to participation in an online support group from patients managing Ehlers-Danlos Syndrome (EDS).
RESULTS
We present a model with excellent goodness of fit indices that exceed a CFI of .995, and an RMSEA value of less than .04. Our model presents nine hypotheses which are all supported. Our analysis of the data shows a significant value of all predicted paths with a p<.001.
CONCLUSIONS
Our findings demonstrate that a feeling of belonging, a willingness to share, and comfort with the technology that supports an online community are associated with patients reporting greater levels of information extraction and social support from online support groups. We further find that greater levels of concern regarding privacy and security of information were associated with lower levels of willingness to share and information extraction of patients from online support groups.