Graduated in Medicine (1978) at the University La Sapienza of Rome and specialized in Neurophysiopathology at the University of Genoa (1982), professor Oriano Mecarelli has worked until July 2020 at the Department of Neurological Sciences (now Department of Human Neuroscience) of Sapienza University of Rome as Aggregate Professor (Confirmed Researcher), with both teaching, research and assistance tasks. He has always dealt with Diagnosis and Treatment of Epilepsy and Clinical Electroencephalography. He is the author of numerous prestigious publications, including the edition of a Italian Manuale di Elettroencefalografia Clinica (Adis International, 2010) and a text in English, Clinical Electroencephalography, published by Springer in 2019. From a scientific point of view, he has held various institutional positions in LICE (Lega Italiana Contro l’Epilessia) since 2003; elected President of LICE for the period 2017-21, he currently holds the position of Past President at the same Scientific Society. He is an active member of SINC (Italian Society of Clinical Neurophysiology) and SIN (Italian Society of Neurology).
The Lega Italiana Contro l’Epilessia – LICE, in the person of Professor Mecarelli, in collaboration with ISTUD’s Health and Care Area, has promoted a narrative research project to find out about the experiences of people with epilepsy with regard to work placement and employment.
WHAT WAS YOUR FIRST APPROACH TO NARRATIVE MEDICINE?
Throughout my professional life as a neurologist I have always dealt with the diagnosis and treatment of epilepsy and I approached Narrative Medicine exactly ten years ago when I read an editorial published in the Lancet by Maria Vaccarella (The Art of Medicine: Narrative Epileptology, Lancet 377; 9764, 2011) which stated that Narrative Medicine in its various forms could offer epileptology a framework for understanding the phenomenon more globally, from a medical, social and symbolic point of view. I discussed this with colleagues in my Scientific Society (LICE – Lega Italiana contro l’Epilessia) and we immediately promoted the first initiatives:
- collections of narratives on a free track by people with epilepsy and their families/caregivers;
- Epilepsy storytelling experiences in schools and theatres;
- pilot projects for the application of narrative medicine in clinical practice using a digital platform; etc.
These first pilot initiatives formed the basis for the formation of a permanent Study Group within LICE, which still promotes research projects in the field of Narrative Medicine stimulating Italian epileptologists to take into account the methodologies of the discipline in their daily clinical practice.
DO YOU THINK NARRATIVE MEDICINE IS AN APPROACH THAT MAKES A DIFFERENCE? IN WHICH WAY?
Certainly using a “narrative” approach in the global management of epileptic pathology provides an additional weapon to healthcare professionals, allowing them to help patients in the management of their pathology and minimising “depersonalisation” in the chronic course of this much stigmatised disease. Since antiquity, epilepsy has represented an individual and social stigma and the disease is not so much serious in itself as it is in its many psychological and social implications. Managing epilepsy (which, moreover, manifests itself in very different syndromes) in the best possible way does not only mean perfecting diagnostic methods and seeking the best available therapies, but also being able to get to know the person suffering from it in depth, and narrative medicine makes it possible to get closer to the individual in order to identify his or her real, often unmet needs.
HOW DID THE PROJECT ‘STORIES OF EPILEPSY AND WORK’, LED BY LICE AND ISTUD, COME ABOUT?
The collaboration between LICE and ISTUD dates back to 2017 when together we carried out the project ERE: Epileptologists telling their experiences caring for patients with epilepsy. On that occasion, we collected a hundred narratives from 25 epileptologists, who were stimulated to respond freely to pre-arranged narrative stimuli. From the analysis of this enormous amount of narratives it emerged that one of the most recurrent themes was that of “denied work”: 60% of the people with epilepsy narrated were not employed! (1)
In 2020, in close collaboration with ISTUD, a working group was set up on this specific topic with the participation of epileptologists and other stakeholders such as patients’ associations, labour law experts, representatives of the Ministry of Health and representatives of employment agencies. The activity took place at a distance, due to the health emergency, but was nevertheless very fruitful and resulted in another position paper for the sharing of guidelines and good practices of integration, retention and employment support for people with epilepsy and their families. The paper pursued two major objectives
- to start talking about the issue of employment of people with epilepsy, which is still very much silenced and subject to a strong stigma by employers, human resources people, sometimes even colleagues;
- start a process to standardise guidelines and systemise good practices to help people with epilepsy to enter and integrate into the world of work, keep it in the best possible conditions, and also support caregivers.
The position paper Epilepsy and Employment was certainly an important first step and the dissemination of the document through multiple channels showed that this initiative has met a need felt not only by the scientific community, but especially by people with epilepsy, who in fact reacted to the news through an exchange, born spontaneously on social networks, of work experiences lived in first person. In order to better respond to this need, in 2021 we designed and implemented the third phase of our project in collaboration with ISTUD, collecting 147 narratives of people with epilepsy on the platform, aimed at learning in detail about their experiences in the field of employment.
WHY IS SUCH RESEARCH IMPORTANT? DID THE RESULTS SURPRISE YOU?
I think the research is important first and foremost because it was the first in our country to address this issue that has such an impact on the lives of a very large population (I would remind you that epilepsy is recognised as a social disease by the WHO and that in 2021 the WHA reminded member states of the importance of dealing with the overall burden of this disease). My astonishment stemmed above all from the fact that in less than two months 147 narratives were received, which, moreover, required access to a digital platform and a certain amount of time to complete. It is not to be taken for granted that people with epilepsy are willing to bare their souls and talk about themselves on such a delicate and involving topic!
Much food for thought can be drawn from the analysis of the narratives. People with epilepsy from school age onwards have less chance of entering the labour market than the rest of the population, both because of the many difficulties they face at school and because of the great hurdle of job interviews. In fact, despite the fact that epilepsy is now better known thanks to training programmes in schools, the stigma is still strong and a crisis in the public sector is enough to seriously compromise study and work opportunities. When a job opportunity is obtained and a crisis occurs in the workplace, the narratives tell us of forced removals, demotions, dismissals, etc., so when epilepsy is passable it is hidden from both employers and colleagues. However, there was no lack of ‘positive’ accounts of situations in which self-esteem gradually grows, and the person decides to communicate their condition (if they had not done so before), especially if they have managed to create good interpersonal relationships.
On the other hand, there are various insights to be gained from the stories of those who have seen epilepsy appear during their working career, perhaps in the workplace. In these cases, doors are often closed in a more traumatic and uncertain way. The search for stabilisation of treatment does not help, but, once again, the stories tell us that a single crisis is enough to cancel or compromise a working career of even years.
In conclusion, there is still much to be done in terms of information and raising awareness about epilepsy and the wealth of these stories and the enormous amount of material to be analysed may represent a good starting point for tackling the problems relating to the employment of people who suffer from it.
ALSO IN THE LIGHT OF THIS LATEST STUDY, CAN NARRATIVE MEDICINE BE A USEFUL TOOL FOR NEUROLOGISTS AND EPILEPTOLOGISTS? DO YOU SEE OTHER PROJECTS ALONG THESE LINES IN THE FUTURE?
On the basis of almost ten years of experience, I can say that the methods of narrative medicine are extremely useful in neurology and especially in epileptology.
Among neurological pathologies, epilepsy is the disorder that is best suited to a narrative approach including medical, psycho-social and cultural aspects.
Neurologists and family doctors are well aware that the successful treatment of epilepsy goes far beyond the control of seizures with medication, as the patient’s good integration and acceptance by society (in the broadest sense) is fundamental.
Many people with epilepsy still experience a reduced quality of life due to the persistence of cultural taboos and fears about the disorder, which in the past was even attributed to demonic possession or divine punishment. Negative reactions to the sudden loss of consciousness and motor control, with various other dramatic signs as a corollary (and also sometimes the association of epilepsy with different degrees of intellectual deficit) has led to epilepsy being considered the stigmatising disorder par excellence. And discrimination and prejudice against people with epilepsy are still present throughout the world.
On the other hand it is undeniable that in many branches today we are witnessing a proliferation of interest in narrative medicine both in the medical-scientific field and in the media, favoured by a series of phenomena: the emergence of precision medicine and personalised care; the development of new technologies and social media that favour the sharing of illness stories and the creation of digital care networks; the progressive shift in the doctor-patient relationship from a hierarchical model to a more equal and participatory model; the emergence of telemedicine and remote monitoring systems; the centrality of narrative and the therapeutic alliance for prevention and therapeutic adherence; the enhancement of the patient’s skills in the care process.
In the wake of our previous experiences, LICE – in collaboration with ISTUD and DNM – is organizing a Training Course in Narrative Medicine (accredited ECM), divided into two modules: a basic training module dedicated to epileptologists who have no experience in the discipline and an advanced module on “Metaphors as a resource in treatment”. The training course will start in April and will end in November this year, and will be just one of the many initiatives that LICE as a Scientific Society will propose in the field of Narrative Medicine.
AT THE FOLLOWING ADDRESS THE PROJECT PAGE WITH THE POSSIBILITY TO DOWNLOAD THE REPORT AND THE PRESENTATION:
A RADIO INTERVIEW ON THE PROJECT STORIE DI EPILESSIA E OCCUPAZIONE WITH PAOLA CHESI FOR INBLU2000 IS ALSO AVAILABLE AT THE FOLLOWING ADDRESS: