Mapping online information needs of Sexually Transmitted Diseases’(STD) patients: A grounded theory investigation (Preprint)
BACKGROUND According to the World health organization (WHO), more than one million sexually transmitted infections are acquired each day across the world. The incidence rates of STDs in the US are at a record high for the fourth consecutive year. Due to the stigma associated with the incidence of STD, there is a general reluctance to seek information in person, and online information sources remain the primary avenues of information seeking. However, these sources are designed without a comprehensive understanding of the information needs of individuals who have contracted STDs. OBJECTIVE To discover the information needs of individuals who (suspect they) have contracted a sexually transmitted disease (STD). A better understanding of their information needs can drive the design of more effective online forums. METHODS This is a qualitative and analytical study of 549 transcripts (consisting of queries posted over the last ten years) from online forums of the American Sexual Health Association, which allows patients, volunteers, and healthcare providers to connect anonymously. The analysis follows a grounded theory (GT) approach with multiple coding stages to discover categories and themes. RESULTS Three categories of information needs emerge. The first two, Clinical and Logistical, are similar to other contexts. However, our analysis shows that there is a significant need for the last category - Psychosocial information. Approximately 59% of instances are linked to concerns such as confusion, discretion, remorse, and others. These needs vary across the stages of a patient journey (from symptom manifestation to treatment maintenance). CONCLUSIONS Responding to the needs of individuals who (suspect they) have contracted an STD requires compassionate and personalized responses (beyond factual clinical and logistical information). Online forums provide anonymity but do not adequately incorporate mechanisms, practices, or incentives to respond to diverse psychosocial concerns. Innovative approaches to add such support can make the online forums more effective for this group of individuals.