How to identify and relieve the pain of people with impaired communication or with language disorders? By observing body and behavioral language and relying on the entourage, recommend specialized doctors. Other leads…
Nearly one in two French people say ” suffer in silence “, forced to deal with pain while appropriate care has been recognized as a fundamental right by the law of March 4, 2022. The problem is even more critical when the person has a disability, and in particular dyscommunicative . How to identify and treat these patients who struggle to make themselves understood when there are no reliable physiological or chemical markers of pain? This question was at the heart of a conference organized by the CoActis health association on November 24, 2022. A few possible answers…
Significant difficulties in evaluating it
« Pain generates a whole series of emotions specific to each person, which it is up to health professionals to identify explains Dr. Bénédicte Gendrault, pediatrician and resource physician at CoActis Santé. ” Unfortunately, there is still a lot of denial and resistance on the part of some to make an objective and quantitative assessment, which can have consequences on physical health but also lead to anxiety, depression, aggression in some patients, with a devastating impact on their quality of life “says Dr Djéa Saravane, specialist in the management of pain and autism spectrum disorders (TSA). He points in particular to a diagnostic eclipse », that is to say the fact that the symptoms of pain are automatically assimilated to the handicap. In the absence of language, behavioral expressions are often not taken into account ».
Prejudices that skew care
Dr. Saravane also remarks that “oinsensitive viewers underestimate pain » as well as « cstereotyped beliefs, for example regarding presumed insensitivity, mainly for patients with ASD and other neurodevelopmental disorders “. He cites the example of Alain, 15, a non-verbal autist who, following sudden scratches, screams and insomnia, was prescribed a neuroleptic by a psychiatrist who assured that ” aggression is very common in people with autism “. After two days of treatment, his behavioral problems having intensified, he received a dose twice as strong and a second neuroleptic, despite the opinion of the family who put forward the thesis of a painful phenomenon. Results : ” worsening of the state of health and loss of all acquisitions ». And ” trained and caring doctor “Finally detected, a few days later, bilateral otitis treated with antibiotic therapy and anti-inflammatory,” and the troubles are gone ». « Often, we don’t let the handicapped person talk regarding his suffering, in his own language, if his speech does not fit into our anatomical and organic references. But it’s up to the doctor to adapt to his patient and take his time, and not the other way around! “says Dr. Saravane, who also encourages support for professionals by offering them training. This is in particular the ambition of the awareness workshops offered by the Adapei (association of parents of children with disabilities) of Corrèze to caregivers and medical-social personnel (article in link below).
The origin of ” mal »
« 80% of behavioral problems in people with autism come from untreated pain “, continues Dr. Saravane. Thereby, ” in the face of any unexplained and sudden behavioral disorder (sleep disorders, anger and opposition, self-mutilation, moans, cries, bursts of laughter…), it is imperative to look for an organic pathology and/or pain “, he insists. Sometimes the explanation is much simpler than you think…” At the dentist, for example, the light in the head, strong odors or even the fabric or the position of the seat can trigger attacks “, testifies Philippe Aubert, 43 years old and “ almost all new teeth now », born with cerebral palsy.
This suffering can be caused, according to Dr. Saravane, by innumerable factors: lasting pain, i.e. nociceptive (articular, muscular, bone) or neuropathic (neurological accident, degenerative disease, post-operative) pain, but also visceral or even related to positioning, a nasogastric tube, vaccines, a dental abscess, otitis, constipation… To identify them, ” it is necessary first of all to be helped by the family circle and the medico-social personnel and to observe the body language and behavior, which takes on its full meaning in the event of a language disorder ». « Caregivers still have a key role, confirm CoActis santé They know the specificities of the person being cared for and must be involved in the consultations as much as possible and considered as facilitators between the carer and the patient. »
Pain rating scales
In addition, Dr Saravane recommends using two tools to refine his ” diagnostic “: the simplified pain assessment scale for dyscommunicating people with ASD (ESDDA), which has six items and can be used by caregivers or not, from the age of 2 years, or the “ non communicating children’s pain check list (NCCPC or GED-DI), which is intended for people with an intellectual disability of more than 3 years. ” Then, the care always combines a drug treatment and another specific non-pharmacological treatment for people with disabilities. “says the doctor. A few months later, a second evaluation is carried out to determine the effectiveness of the treatment.
Resource sheets for patients…
« Access to care also means preparing for the medical appointment and preventing possible anxiety says Dr. Gendrault. Faced with this observation, CoActis santé has notably co-designed two free, educational and customizable tools. First of all, the HealthBD sheets describe, in Easy to read and understand (FALC), the course of each medical examination and what the patient may feel (article in link below). The sheet ” pain, disability », it proposes, more precisely, means allowing to prevent it or to express it on a daily basis or during a treatment. According to an impact study conducted by the Kimso agency in 2017, 98% of users say they are ” better prepared for consultation ».
… and caregivers
Second resource precious “: the Handiconnect.fr website, which aims to help healthcare professionals in their daily practice with patients with disabilities. On the program: other advice sheets for knowing how to identify and relieve pain, a directory of existing training courses in France and the possibility of asking questions of experts when faced with a care situation specific to the disability. The site also offers a toolbox that allows you to adapt your communication, for example via Makaton (a method that uses gestural signs and graphic symbols), Playmobil or other toys, pictograms, comics or even mixed solutions… “ There is no miracle solution that is suitable for all types of disabilities, the main thing is to adapt to each patient and, above all, to respect him “, urges Philippe Aubert who deplores “ countless derogatory thoughts and reactions from caregivers ».
“All reproduction and representation rights reserved. © Handicap.fr. This article was written by Cassandre Rogeret, Handicap.fr journalist”
