Calibrated Uncertainty: How In-Vitro Fertilization Patients Use Information to Regulate Emotion

The acquisition of information and its use in decision making and coping by people with health concerns have garnered much attention in CSCW. This study investigated patients' information behavior during a critical treatment, in vitro fertilization (IVF). Based on in-depth interviews with 29 IVF patients, this study uncovered several underlying drivers and mechanisms accounting for patients' information behavior. Their behavior is shown to be driven by coping concerns - specifically, dealing with the unpredictability of the treatment outcome, overcoming feelings of powerlessness and the sense of being out of control, and managing difficult emotionality. These factors shape patients' information needs and drive their behaviors in seemingly irrational but ultimately logical and adaptive ways. In contrast to the conventional wisdom that patients typically seek information that can help them fill knowledge gaps to resolve treatment uncertainty and foster their positive emotions, we discovered that in response to the desire to control their perceptions of irresolvable uncertainty and the difficult emotional needs of the moment, IVF patients frequently used ?calibrated uncertainty" - a psychological mechanism or state driven by the simultaneous seeking of varying levels and contradictory valences of certainty - to actively conduct targeted searches and actively use the information sought. This behavior has not always been understood by the IVF clinicians, who have assumed that information was primarily for knowledge transfer. This study shows that coping, emotion regulation, and information-seeking are inextricably bound together in the patient experience, and that this intertwining must be considered in the clinical setting for physician-patient communication and for patient-facing information. The findings have several valuable design implications for improved health informatics technology and service delivery systems.