Navigating the Emotional Tightrope: How IVF Patients Use Information to Thrive
Health care providers often express frustration and bafflement when their patients tirelessly engage in information searches throughout their treatment journey, even when–from the clinic’s point of view–they have been provided with all the necessary knowledge and there would appear to be nothing more for patients to do. In Vitro Fertilization (IVF) patients, in particular, are known to seek information assiduously, even during the final stages of their treatment, even when they no longer have protocols to follow or decisions to make. The conventional explanation is that patients primarily seek information for objective facts, medical knowledge, or tips to facilitate their rational decision-making. Closer scrutiny, however, reveals that other less visible motivations are in fact more important, especially to patients’ emotional well-being in critical and stressful high-stakes treatments. While at first glance this relentless information-seeking behavior, typical of IVF patients, may seem irrational or unproductive — curiously, these patients themselves in fact frequently acknowledge it as such — it serves their emotional needs in profoundly significant ways. Thus, seemingly paradoxically, most of them incorporate information-seeking as a fundamental aspect of their daily coping. This intriguing phenomenon, noted especially in IVF patients, who undergo a particularly stressful and complex treatment regimen with extremely high personal stakes, raises a perplexing question: What motivates patients to persist in this seemingly unproductive information behavior, even when they themselves know intellectually that it is inexplicable? Our paper describes some of the motivations and concerns for patients’ incessant and emotion-laden information-seeking.
In our paper, titled ‘Calibrated Uncertainty: How IVF Patients Use Information to Regulate Their Emotions,’ we delve into the daily experiences of 29 patients undergoing IVF treatment. Their thoughts and reflections, captured in in-depth interviews and field observations, showed us that the emotional aspect of IVF is often the most challenging part of their journey. In their pursuit of control and emotional equilibrium, patients turn to online information searching as a coping mechanism. We unveil the profound motivation driving IVF patients to use information for emotional management. Importantly, we not only answer the ‘why’ but also the ‘how’: that is to say, we describe their active emotional use of information. This psychological process, the deliberate seeking of a manageable and adaptive emotional state, is in stark contrast to the assumed passive reception of knowledge and reactive emotionality. We have termed this phenomenon, critically important to the patients’ maintenance of emotional equilibrium, “calibrated uncertainty.” This study provides a clear and comprehensive understanding of the mechanisms at play during this exceptionally stressful and life-altering journey.
An Emotional Balancing Act
The emotional journey of IVF patients resembles a high-stakes tightrope act. Picture this: they embark on this path as a last resort, facing the profound challenge of resolving infertility so as to fulfill their dream of parenthood. However, the odds of success are often dishearteningly low, lingering at less than 40%. Imagine balancing on this tightrope while simultaneously riding a roller coaster of emotions: IVF patients must avoid plummeting into despair, which could render them less resilient to complete their treatment or maintain their well-being, and at the same time they must avoid soaring to unrealistic heights of hope, recognizing that such optimism could result in a crushing fall if the treatment ends in disappointment. It’s akin to walking a fine line between hope and despair, with emotions fluctuating throughout each treatment phase. Furthermore, patients often say that they feel alone in their journey and that the help they are offered–including factual information and medical data–doesn’t enable them to manage the emotionality produced by the balancing act they’re performing.
While previous research primarily viewed information as a tool for knowledge acquisition and informed decision-making, we delve deeper. Information, we’ve discovered, can evoke, regulate, and transform emotions within the context of critical medical treatments. In addition, we’ve found that different emotions that patients experience change the balancing act, producing a variety of emotional trajectories and patterns that have not, to our knowledge, been identified before (and that will be the focus of future papers) This paradigm shift reshapes our understanding of information’s role and functions in the management of emotions.
Our paper gives providers insights into patient experience that can guide them in thinking about–and responding to–patients’ needs. We show that the management of emotionality is the most important challenge for patients, especially those undergoing high-stakes, critical medical treatment. Emotionality has direct effects on treatment outcomes and patient satisfaction, so understanding these patients’ emotional experiences has to be paramount for designers of information delivery. Knowing the typical emotional trajectory patients experience during treatment can guide the design of systems that prioritize a focus on treatment progress.
