Pediatrics: How to Handle the Difficult Moment of Telling a Child About a Chronic Illness?
Anna, 34, works in the medical field. She works with patients every day, and as a healthcare professional, she is familiar with many medical conditions and their consequences.
Séverine Colinet, CY Cergy Paris Université and Céline Avenel, University of Montpellier
One might think that this experience would have been helpful to her when, during her pregnancy, she was told that her baby had a birth defect. However, as she explained to us, it wasn’t until she had to fill out administrative paperwork in which her son’s condition was explicitly named that she truly realized the implications of that diagnosis.
This example clearly illustrates the complexity of receiving the news of a chronic illness. This moment, which is always difficult, proves particularly challenging when a child—their own child—is affected. Parents then find themselves swept up in a series of often traumatic events. Feelings of guilt, helplessness, a sense of irreversibility, and a state of shock intertwine and combine with the impression of a lack of explanation due to the difficulty in understanding often technical medical language.
The support provided by the doctor and the care team is what makes all the difference: it gives parents the opportunity to make informed decisions and to feel understood, rather than judged.
To better understand the full complexity of these moments—for both parents and healthcare professionals— we spoke with numerous doctors practicing at various hospitals in metropolitan France, as well as with their patients. While they were looking forward to a “happy event,” the parents we met saw this pivotal moment in their lives upended by illness.
Some couples had children, while others did not—prevented from doing so by a serious illness. These couples agreed to share with us moments that were, at times, extremely painful. We are deeply grateful to them as we share the insights gained from these conversations here.
Announcements Marked by Uncertainty
Heart disease, diabetes, chronic respiratory conditions, cancer… In France, many families are dealing with chronic illnesses. It is currently estimated that more than 15 million people are living with these conditions, including 1.5 to 4 million patients under the age of twenty.
Scientific research has already devoted considerable attention to the psychological, identity-related , and social impacts on children and those around them of receiving a diagnosis of a medical condition in the fields of health and disability. The diagnosis of a chronic illness has three main characteristics.
Announcements Marked by Uncertainty
The first of these characteristics is that, in reality, this is not a single medical consultation but a series of consultations. When a sign of the disease is detected, the couple sees various specialists in succession. Appointments with an obstetrician-gynecologist, radiologist, pediatrician, nephrologist, urologist, and other specialists will follow one after another until a diagnosis can be established. Unfortunately, this is not always the case, particularly with rare diseases, which give rise to very specific situations.
In 2015, a Eurordis survey of eight rare diseases that are nonetheless relatively common in Europe showed that 25% of patients waited between 3 and 5 years before receiving a diagnosis. Furthermore, during that time, 40% received an incorrect diagnosis. Finally, significant disparities in the time it took to obtain a diagnosis were identified. While some cases took less than one year, others took more than 20 years! The longest delays were found to be associated with a negative perception of substandard care.
This is the second characteristic of these situations: there can be a high degree of uncertainty. Sometimes, doctors are unable to determine the severity of the disease, the prognosis for survival, or—when the disease is detected while the child is still a fetus—the conditions under which the child will be born…
In such situations, it is important for the doctor to be mindful of the impact of the words he or she chooses to use.
This is the third characteristic of this type of announcement. It is important to ensure that the child’s future is not defined solely by the illness and that decisions are not rushed. Upon learning of their child’s illness, the affected families will begin a journey of care. The child will receive care—sometimes starting at birth from the neonatal unit—and will then be closely monitored by the pediatric department.
For doctors, delivering the news therefore truly means laying the groundwork for a relationship that will continue well beyond the process of delivering the news. To achieve this, they will need to draw on a range of interpersonal skills, including availability, honesty, transparency, and the ability to reassure patients in the face of the diagnosis…
However, the complexity of the situation makes communication difficult, and several obstacles stand between doctors and parents. To overcome them, it is important to understand the impact that the news of their child’s illness has on parents.
Stunned silence and bewilderment
At first, the news comes as a complete shock. Parents are in shock, especially since the news may have come very late in the pregnancy. This intense shock can be further compounded by the difficulty in understanding the medical terms used by doctors. This affects all segments of the population, including those who are—in theory—more familiar with the medical world than others, such as Anna. Like her, some parents only become aware of the diagnosis when they read the medical report or when they see the name of their child’s condition on an administrative document.
Some couples experience the diagnosis as a “sentence” for their child, even after the child has been born. The lack of information destroys their hope. They find themselves torn between two feelings: deep gratitude toward the medical staff who made it possible for their child to live, and a profound sense of confusion in the face of a message that seems to them to be dooming their child’s future. At the moment the news is delivered, they feel stripped of their right to make decisions as parents.
The situation can be exacerbated when certain information is disclosed too early. For example, informing parents that their child is not viable as soon as the ultrasound is performed can be traumatic for them. Disclosing this information too early has been identified as a factor contributing to dissatisfaction among cancer patients in palliative care who feel they learned about it too soon. Conversely, adopting an excessively positive tone in professional communication would also be counterproductive to the couple’s understanding of the news. When delivering the news, “consistency is essential.” Indeed, when the statements made by the healthcare providers involved in the care process are contradictory, the inconsistencies experienced during the process of receiving the news become problematic, as they interfere with the parents’ current understanding of the diagnosis. Complementarily, a recent study notes that the disclosure is particularly stressful for parents due to the large number of healthcare professionals involved; it therefore underscores the importance of their collaboration.
Camille, a 38-year-old mother whose second child was diagnosed with posterior urethral valve disease—a rare malformation that affects only boys—sums it up as follows:
“During the pregnancy, we found it difficult that every doctor had a different opinion. According to the urologist, it’s very simple—it can be removed; according to the gynecologist, there’s a strange kidney, and we think it isn’t working; according to the other one, it’s fine—it’s functioning. We’d come back from an appointment thinking everything was fine, and then it would be terrible. What did we do? It would have been nice if they’d coordinated with each other before scheduling our appointments.”
These inconsistencies can be explained, in particular, by the fact that in some cases a large number of medical professionals are consulted, or—when the child’s clinical condition requires additional tests—by a lack of data. Since doctors cannot take a firm and definitive stance, they provide parents with nuanced explanations, some of which may at times appear contradictory to the statements made by other medical professionals at certain points in the course of care.
This uncertainty in diagnosis is particularly difficult for parents and patients to cope with. What they expect from a diagnosis is not simply a diagnosis itself, but rather support, which will serve as the starting point for building a doctor-patient relationship.
Finally, other factors influence how parents react to the news of a chronic illness. This is particularly true of their perception of the affected organ. The heart or lungs, for example, receive more media attention than the kidneys. However, a sense of familiarity influences one’s understanding of medical terminology. Some people may underestimate the severity of the disease when it affects a less “high-profile” organ.
As a result, in the public consciousness, kidney disease is now perceived as “less serious” than other diseases, largely because there are solutions—such as transplants—to address the resulting impairments. Not all parents are necessarily aware that a transplant may not last a lifetime, or know that there is a risk of rejection, that a transplant requires lifelong medication, and so on.
Some Suggestions to Help Doctors
These communication gaps between doctors and parents make the delivery of this news a difficult moment for both parties. It is all the more important to prepare healthcare staff for this, given that the current staffing shortages are increasing the pressure they face.
There are several approaches that can help parents cope with receiving this difficult news. Among them, the use of active learning methods—already employed in health care simulations—is one option worth considering. In line with the goal of “never a first time with a patient,” French universities should continue to expand the use of simulated scenarios and resource patients—that is, programs that involve patients and allow future doctors to practice interpersonal skills early in their training with actual patients, actors, or students playing these roles.
In addition, it is possible to draw on narrative pedagogy, which has been developed particularly in the field of nursing. This approach relies on storytelling as a positive mechanism for learning, analyzing situations, and transforming actions. In practice, training scenarios are based on the analysis of real-life experiences recounted by patients during care and/or by students reflecting on a care situation. This humanistic approach “enables participants (instructors and students) to understand and learn, to develop interpretive thinking, to generate multifaceted and diverse knowledge, and to integrate theory into practice.” The analysis of these experiences strengthens professional-patient cooperation. In doing so, narrative pedagogy creates a strong interpersonal dimension. It can help “overcome personal murmuring or collective consolation and transform into social action and the practice of citizenship.”
Involving patients from the very beginning of healthcare professionals’ training—to ensure that their experiences are taken into account—has proven to be beneficial. Programs of this type are already in place in medical training programs at several institutions: at the University of Patients in Paris, in the Department of General Medicine in Bobigny, and in Montreal, Canada… Patients share their stories, take part in simulation exercises, and participate in role-playing exercises with medical students…
Finally, and in connection with the previous point, we must further expand the sharing of experiences through initiatives that complement existing therapeutic education programs. This involves, for example, fostering exchanges between families who have had to cope with a diagnosis of a chronic illness and parents who are now facing the same situation, or setting up support groups where people can share experiences regarding the day-to-day management of the illness. These programs should not be designed solely for families: physicians, too, must have access to protocols for sharing and analyzing practices, starting with their initial training.
By taking into account the accounts of both parents and healthcare providers, the root causes of communication gaps between doctors and patients can be better understood, which will help prevent further distress for couples who are already suffering.
**For more information:**
_ – Colinet, S., and Avenel, C., 2018 “Education, Training, and Health—How to Develop Pathways for Notifying Parents of a Rare Disease in Their Unborn Child”, Presses universitaires de la Méditerrannée, “Changes in Education and Training” series.
Séverine Colinet, Associate Professor of Education, CY Cergy Paris University and Céline Avenel, Educational Engineer, PhD, Center for Support of Educational Innovations, I-Site MUSE, University of Montpellier, Associate Researcher at LIRDEF, University of Montpellier
This article is republished from The Conversation under a Creative Commons license. Readthe original article.