"To tell or not to tell?": Social dynamics in disclosure communities
The objective of this qualitative study was to explore the disclosure behaviors displayed by patients within their disclosure communities (DC) through interviews and grounded theory analysis. Twenty-three respondents comprised of patients, survivors, family members, spiritual leaders, physicians, a nurse and a social worker shared their experiences with disclosing health information with others.
In general, DCs were composed of both family and non-family members. Non-family members included friends, local community, spiritual community and workplace. The study found two important factors that influence patients' disclosure behavior: stage of illness and role of disclosure community members. The first factor, the stage of illness, is an important triggering point that influences the choice to disclose to others. Analysis showed that the dialectics of privacy and disclosure appeared throughout the three stages of diagnosis, treatment and post-treatment. Roles of DC included relationship among individuals (closeness and comfort level) and the special roles DC members performed for patients and survivors. This study identified three special roles: social supporter, the patient advocate, and the medically literate. Social supporters listen and sympathize with patients' problems. Patient advocates provide direct help to patients, for example by accompanying them during medical interviews, while medically literate people are those who, although not part of the official medical team, provide important medical advice and/or information to patients.
The findings of this research illuminate the social dynamics in disclosure communities, showing that individuals constantly balance the need to disclose or be private based on their social interaction with others, and that this process helps them determine who will be part of their disclosure community and who will not. This balancing act enables the owner of health information to protect his communication boundaries, thereby helping him manage his health information during the crisis time. Insights from this study could help guide information systems designers in the future to develop interfaces patients could use to make, record, and disseminate decisions about their disclosure communities, and about their health information with respect to members of those communities.