Pediatrics: how to manage the difficult moment of announcing a chronic illness?

Anna, 34, works in the medical field. She works alongside patients on a daily basis and, as a professional, is familiar with many pathologies and their consequences.

Séverine Colinet, CY Cergy Paris Université and Céline Avenel, University of Montpellier

It's never easy for a doctor to announce a diagnosis of chronic illness to parents, but some ways are better than others. - Shutterstock

You'd think this experience would have come in handy when, during her pregnancy, she was informed that her baby was suffering from an anomaly. However, as she explained to us, it wasn't until she had to fill in some administrative paperwork explicitly naming her son's illness that she really became aware of the implications of this diagnosis.

This example illustrates just how complex it is to receive the news of a chronic illness. It's always a difficult time, and particularly so when a child, his or her child, is involved. Parents find themselves caught up in an often traumatic chain of events. Feelings of guilt, powerlessness, irreversibility and shock all combine with the impression of lacking explanations, due to the difficulty of understanding medical language that is often technical.

This is where the support provided by the doctor and the care team really comes into its own: it gives parents the opportunity to make informed decisions, to feel understood and not judged.

To better grasp the complexity of these moments, for parents and healthcare professionals alike, we spoke to a number of doctors working in various hospitals in mainland France, as well as their patients. While they were expecting a "happy event", the parents we met had seen this crucial moment in their lives turned upside down by illness.

Some children were born, others were not, prevented by a serious illness. These couples agreed to share with us what were sometimes extremely painful moments. We'd like to thank them sincerely for sharing with us the lessons learned from these exchanges.

Announcements marked by uncertainty

Heart problems, diabetes, chronic respiratory ailments, cancer... In France, many families are faced with chronic illnesses. Today, it is estimated that over 15 million people suffer from them, including 1.5 to 4 million patients under the age of twenty.

Scientific research has already focused on the psychological, identity and social impact on children and their families of the announcement of a pathological diagnosis, in the field of health and disability. The announcement 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 announcement, but a series of announcements. When a sign of the disease is detected, the couple successively meets with different specialists. Consultations with an obstetrician-gynecologist, radiologist, pediatrician, nephrologist, urologist and other practitioners follow one another until a diagnosis can be made. Unfortunately, this is not always the case, especially in the case of rare diseases, which can lead to very special situations.

In 2015, a Eurordis survey of eight rare yet relatively common diseases in Europe showed that 25% of patients waited between 3 and 5 years for a diagnosis. What's more, 40% were misdiagnosed during this time. Finally, wide disparities in the time taken to obtain a diagnosis were identified. While some were less than 1 year, others took more than 20 years! The longest delays were found to be associated with a negative perception of deteriorating care conditions.

This is the second characteristic of these situations: there can be a great deal of uncertainty. Sometimes, doctors are unable to say how serious the disease is, what the prognosis is for survival, or, when the disease is detected while the child is still a fetus, under what conditions the child will be born...

In such contexts, the doctor needs to be attentive to the impact of the words he or she uses.

This is the third characteristic of this type of announcement. The aim is to ensure that the child's future is not locked up in the illness, and that decisions are not rushed. On learning of their child's illness, the families concerned enter a care process. The child will be cared for, sometimes from birth, by the neonatal unit, then closely monitored by the pediatric unit.

For doctors, announcing really means laying the foundations for a relationship that will continue well beyond the announcement phase. To achieve this, they will need to mobilize a set of interpersonal skills including availability, honesty, transparency, the ability to reassure about the diagnosis...

However, the complexity of the moment makes communication difficult, and several obstacles stand between doctors and parents. To overcome them, it's important to understand the effects on parents of hearing about their child's illness.

Astonishment and incomprehension

Initially, the announcement produces a shocking effect. The parents are shocked, all the more so as the announcement may have come very late in the pregnancy. This violent shock can be further aggravated by the difficulty of understanding the medical terms used by doctors. This affects all categories of the population, including those who are - a priori - more familiar with the medical world than others, like 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 illness on an administrative document.

Some couples experience the announcement as a "condemnation" of their child, even if he or she is born. Lack of information destroys hope. They find themselves caught between two feelings: a deep gratitude to the medical profession that has allowed their child to live, and great incomprehension in the face of a discourse that seems to them to condemn his future. At the moment of the announcement, they feel dispossessed of their decision as parents.

The situation can be exacerbated when certain information is given too early. For example, parents may be traumatized by being told that their child is non-viable as early as the ultrasound scan. The precocity of the announcement has been analyzed as a factor of dissatisfaction among palliative cancer patients who feel they learned too early. Conversely, adopting an excessively positive tone in one's professional discourse would also be counterproductive for the couple's understanding of the announcement. In the announcement, "a concern for consistency is essential". In fact, when the discourses of the practitioners involved in the care process prove to be contradictory, the inconsistencies experienced during the announcement process become problematic, as they interfere with the parents' current understanding of the diagnosis. Complementing this, a recent study suggests that the announcement process is particularly stressful for parents, due to the large number of health professionals involved; it is therefore a reminder of the importance of their collaboration.

What Camille, a 38-year-old mother whose second child has been diagnosed with posterior urethral valves, a rare malformation that only affects boys, sums up:

"During the pregnancy, we found it difficult that each doctor gave his point of view. For the urologist, it's very simple, it comes out; for the gynecologist, there's a weird kidney, we think it's not working; for the other, it's fine, it's working. We'd come back from a consultation, everything was fine, and then it was horrible. What did we do? Wouldn't it have been nice if they'd coordinated before we had any appointments?

These inconsistencies can be explained by the fact that, in some cases, a large number of medical interlocutors are consulted, or, when the child's clinical situation requires additional examinations, by a lack of data. As doctors are unable to take a firm and definitive position, they provide parents with nuanced information, some of which may appear contradictory when compared with statements made by other medical contacts at certain points in the treatment process.

This instability in diagnosis is particularly difficult for parents and patients. What they expect from an announcement is not a simple diagnosis, but rather support, which will be the starting point for building a doctor-patient alliance.

Finally, other factors influence parents' reception of the news of a chronic illness. This is particularly true of their perception of the organ concerned. The heart and lungs, for example, are more "mediatized" than the kidneys. The feeling of familiarity has an influence on the understanding of medical language. Some people will underestimate the seriousness of the disease when it affects a less "charismatic" organ.

Today, kidney disease is perceived as "less serious" than other illnesses, not least because solutions such as transplants are available to compensate for deficiencies. Not all parents are aware that transplants may not last a lifetime, or that there are risks of rejection, or that transplants require ongoing medication, and so on.

A few tips to help doctors

These gaps in communication between doctors and parents make the announcement a complex moment for both parties. It is all the more important to prepare healthcare staff for this, as the current context of staff cuts increases the pressure on them.

There are a number of ways of making it easier for parents to accept these new difficulties. Among them, the use of active teaching methods, such as those already used in healthcare simulation, is an option worth considering. In line with the "never the first time with the patient" objective, French universities should continue to deploy role-playing exercises and the use of resource patients, i.e. systems that include patients and enable future doctors to practise managing interpersonal skills from the very start of their training, with people being cared for, actors or students playing this role.

In addition, it is possible to mobilize narrative pedagogy, developed in particular in the nursing sciences. This approach is based on narrative as a virtuous mechanism for learning, analyzing situations and transforming actions. In concrete terms, training situations are based on the analysis of real-life experiences recounted by patients in the course of care and/or by students looking back on a care situation. This humanistic approach "enables participants (teachers and students) to understand and learn, to develop interpretive thinking, to generate multiple and diversified knowledge and to integrate theory into practice"). Analysis of these experiences strengthens professional-patient cooperation. In so doing, narrative pedagogy creates a strong interpersonal dimension. It can help to "overcome personal murmuring or collective consolation and become a social action and a practice of citizenship").

Involving patients in the initial training of healthcare professionals, to ensure that their experiences are taken into account, is proving beneficial. Arrangements of this type are already in place in the medical training courses of several institutions: at the Université des patients in Paris, in the department of general medicine in Bobigny, in Montreal, Canada... Patients testify, take part in a simulation system, participate with aspiring doctors in role-playing games...

Lastly, and in line with the previous point, we need to further develop the sharing of experiences, through schemes that complement existing therapeutic education programs. For example, we need to encourage exchanges between families who have had to deal with the news of a chronic illness, and parents who are confronted with it in their turn, or to set up experience-sharing groups on the day-to-day management of the illness. These schemes should not be designed solely for families: doctors should also benefit from protocols for exchanging and analyzing their practices, right from their initial training.

By taking into account the testimonies of parents and healthcare professionals, we can better understand the causes of communication gaps between doctors and patients, and avoid adding to the distress of couples who are already suffering.


**Find out more:**

_ - Colinet S. and Avenel C., 2018 "Education, training and health - How to build rare disease announcement pathways for the unborn child".Presses universitaires de la Méditerrannée, Mutations en éducation et en formation series.The Conversation

Séverine Colinet, Senior Lecturer in Education, CY Cergy Paris Université and Céline Avenel, Pedagogical Engineer, PhD, Centre de Soutien aux Innovations Pédagogiques, I-Site MUSE Université de Montpellier, Chercheuse associée LIRDEF, University of Montpellier

This article is republished from The Conversation under a Creative Commons license. Read theoriginal article.