Mapping Information Needs of Patients With Sexually Transmitted Infections Using Web-Based Data Sources: Grounded Theory Investigation

Abstract

Background: According to the World health organization (WHO), more than 1 million sexually transmitted infections (STIs) are acquired each day across the world. The incidence rates of STIs in the United States are at a record high for the fourth consecutive year. Owing to the stigma associated with the incidence of STI, there is a general reluctance to seek information in person. Instead, web-based 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 STIs.

Objective: This study aimed to investigate the information needs of individuals who have or suspect they have contracted an STI. A better understanding of their information needs can drive the design of more effective digital interventions.

Methods: This is a qualitative and analytical study of 549 transcripts (consisting of queries posted over the last 10 years) from web-based forums of the American Sexual Health Association (ASHA), which allows patients, volunteers, and health care providers connect anonymously. The analysis follows a grounded theory (GT) approach with multiple coding stages to uncover categories and themes.

Results: Three categories of information needs emerged. 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's journey from symptom manifestation to treatment maintenance.

Conclusions: Responding to the needs of individuals who have or suspect they have contracted an STI requires compassionate and personalized responses (beyond factual clinical and logistical information). Web-based 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 digital interventions more effective for this group of individuals.

Keywords: American Sexual Health Association; grounded theory; health information seeking; information needs; online forum; patient journey maps; sexually transmitted diseases; sexually transmitted infection; stigma; stigmatizing disorders.