Pediatrics: How to Handle the Difficult Moment of Telling a Child About a Chronic Illness?
Anna, 34, works in the medical field. She interacts with patients on a daily basis, and as a professional, she is familiar with many medical conditions and their consequences.
Séverine Colinet, CY Cergy Paris University and Céline Avenel, University of Montpellier
One might think that this experience would have helped her when, during her pregnancy, she was told that her baby had a medical condition. However, as she explained to us, it wasn’t until she had to fill out official 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 a diagnosis of a chronic illness. This moment, which is always difficult, is particularly challenging when a child—their own child—is involved. 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 lacking understanding due to the difficulty in grasping often technical medical language.
This is where the support provided by the doctor and the healthcare team really comes into its own: 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 working in various hospitals across mainland France, as well as with their patients. While they were awaiting 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 affected, including 1.5 to 4 million patients under the age of twenty.
Scientific research has already extensively examined the psychological, identity-related , and social impacts on children and their families 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, it is not a single consultation but a series of consultations. When a sign of the disease is detected, the couple sees various specialists in succession. Consultations with an obstetrician-gynecologist, radiologist, pediatrician, nephrologist, urologist, and other practitioners will follow one after another until a diagnosis can be established. Unfortunately, this is not always the case, particularly with regard to rare diseases, which give rise to very specific situations.
In 2015, a Eurordis survey of eight rare diseases that are nevertheless 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 taken to obtain a diagnosis were identified. While some cases took less than a year, others took over 20 years! The longest delays were found to be associated with a negative perception of poor healthcare conditions.
This is the second characteristic of these situations: there can be a great deal of uncertainty. Sometimes, doctors are unable to determine the severity of the illness, the prognosis for survival, or—when the illness 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 they 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 families involved will begin a journey of care. The child will be cared for, sometimes starting at birth by neonatal services, and then closely monitored by pediatric services.
For doctors, delivering the news therefore truly amounts to laying the groundwork for a relationship that will continue well beyond the moment the news is delivered. To achieve this, they must draw on a range of interpersonal skills, including being approachable, honest, and transparent, as well as the ability to reassure patients in the face of a diagnosis…
However, the complexity of the situation makes communication difficult, and several obstacles stand between doctors and parents. To overcome these obstacles, 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 a state of shock, especially if the diagnosis was made very late in the pregnancy. This intense shock can be further exacerbated by the difficulty in understanding the medical terminology used by doctors. This affects all segments of the population, including those who are—in theory—more familiar with the medical field 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 their child’s condition listed on an administrative document.
Some couples experience the diagnosis as a “sentence” for their child, even after the child is born. The lack of information destroys their hope. They find themselves torn between two emotions: deep gratitude toward the medical staff who kept their child alive, and a profound sense of bewilderment at a prognosis that seems to them to condemn their child’s future. At the moment of the diagnosis, they feel stripped of their decision-making power 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 early as the ultrasound can be traumatic for them. The timing of such disclosures has been identified as a factor contributing to dissatisfaction among cancer patients in palliative care who feel they were told too soon. Conversely, adopting an excessively positive tone in professional communication would also be counterproductive to the couple’s understanding of the news. In the announcement, “consistency is essential.” Indeed, when the statements of the healthcare providers involved in the care process are contradictory, the inconsistencies experienced during the announcement process become problematic, as they interfere with the parents’ current understanding of the diagnosis. Complementarily, a recent study highlights the fact 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 has been diagnosed with posterior urethral valves—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. The urologist said it was very simple—it could be removed; the gynecologist said there was a strange kidney, and they thought it wasn’t working; the other doctor said it was fine, it was working. We’d come back from one appointment thinking everything was fine, and then the next one 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 further testing—by a lack of data. Since doctors cannot take a firm and definitive stance, they provide parents with nuanced explanations, some of which may sometimes appear contradictory compared to the statements of other medical professionals at certain points in the care journey.
This uncertainty surrounding the diagnosis is particularly difficult for parents and patients to cope with. What they expect from a diagnosis is not merely 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, this sense of familiarity influences how well people understand medical language. Some people may underestimate the severity of the illness if it affects a less “charismatic” organ.
As a result, kidney disease is now generally perceived as “less serious” than other illnesses, largely because treatments such as transplants are available to address the condition. Not all parents are necessarily aware that a transplant may not last a lifetime, or know that there is a risk of rejection, that the transplant requires lifelong medication, etc.
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, as 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 teaching methods—already employed in healthcare simulations—is one option worth considering. Pursuing, through this goal of “never the first time with a patient,” the initiative launched by French universities to use role-playing scenarios and patient resources—that is, approaches that involve patients and allow future doctors to practice interpersonal skills during 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 powerful mechanism for learning, analyzing situations, and transforming actions. In practice, training scenarios are based on the analysis of real-life experiences recounted by patients receiving care and/or by students reflecting on a care situation. This humanistic approach “enables participants (teachers and students) to understand and learn, to develop interpretive thinking, to generate diverse and multifaceted 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 a practice of citizenship.”
Involving patients from the very beginning of healthcare professionals’ training, to ensure that their experiences are fully 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, in Montreal, Canada… Patients share their stories, participate in simulation exercises, and take part in role-playing exercises with medical students…
Finally, and in connection with the previous point, we need to 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 for sharing experiences regarding the day-to-day management of the illness. These initiatives should not be designed solely for families: physicians, too, must benefit from protocols for exchanging and analyzing practices, starting with their initial training.
By taking into account the accounts of both parents and healthcare providers, we can better understand the root causes of communication gaps between doctors and patients, thereby preventing 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 Reporting Rare Diseases in Unborn Children”, Presses universitaires de la Méditerranée, “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.