Pediatric epilepsy: psychological assistance
Psychological assistance in cases of epilepsy complements drug treatment and serves to reduce fears and protects the child from social isolation and emotional and behavioral disorders
Epilepsy is a neurological disease that manifests itself in very different forms, so much so that it is more correct to speak of epilepsies
They are characterized by sudden, sometimes very brief crises and by the intense and sudden activation of groups of neurons, the cells of our brain.
They are accompanied by typical alterations of the electroencephalogram (EEG), and are expressed in involuntary, partial or generalized motor manifestations.
This diversity translates into very different prognoses and a quality of life that ranges from a significant impairment for the affected child and for the family itself to the almost total absence of limitations.
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Epilepsy is one of the most common neurological diseases
In industrialized countries it affects about 1 person in 100: it is therefore estimated that in Europe about 6 million people have epilepsy in an active phase (i.e. with persistent seizures and still undergoing treatment) and that the disease affects about 500,000 people in Italy.
The highest incidence peaks are in children and the elderly.
However, its frequency is likely to be underestimated, as it is often kept hidden for psychological and social reasons.
A great American epileptologist, Lennox, said that the subject with epilepsy suffers more than for the disease than him, for all that it entails above all on a psychological and social level.
Constant psychological control is therefore an indispensable intervention in all phases of pediatric epilepsy.
The first treatment tool is pharmacological, therefore based on the use of antiepileptic drugs.
These are very long therapies, they can last several years, sometimes characterized by the combination of several drugs that must be taken in 2-3 daily doses, at rather regular intervals.
Periodic blood tests are also needed to measure the level of the drug in the blood and to monitor its effects on the body.
Considering the commitment that drug therapy involves, as well as the possible side effects of drugs, in cases with sporadic seizures, with seizures that do not negatively affect the patient’s quality of life or with seizures that will resolve spontaneously, it is possible that the neurologist chooses not to initiate any drug treatment.
In 15-20% of subjects with epilepsy it is not possible to obtain satisfactory seizure control: in these cases we speak of drug resistance and alternative therapies such as the ketogenic diet or neurosurgical treatment are considered.
The diagnosis of epilepsy is among the most difficult to accept
Once the therapy has started, psychosocial problems become relevant and are often the cause of psychic disorders mainly of an anxious type.
Crises have an extremely traumatic effect, both for the child and for the parents, given their sudden and shocking nature.
Anxiety symptoms can sometimes become so prevalent as to require psychotherapeutic intervention and further pharmacological treatments.
Psychological assistance in pediatric epilepsy includes an initial evaluation phase to be carried out at the onset of the seizures.
Describing the child’s difficulties and resources has an important prognostic significance and helps to set up a possible rehabilitation treatment and psychological support and the most appropriate educational and teaching strategies.
The psychological instrument must necessarily consider the child and the parental couple and be carried out from a global perspective of cognitive, affective, neuropsychological, family, social and environmental assessment.
Over time, the perception that children and young people have of their own clinical condition, of the experience of the whole family, of the possible perceived stigma and of personal adaptation resources must be considered.
Epilepsy can pose a risk to the child’s development not only in cognitive terms but also in emotional and behavioral terms.
One of the most frequent psychological implications is family overprotection and the tendency to hide the diagnosis.
The crisis event tends to hinder the adolescent’s natural drive for autonomy, thus putting his social integration at risk.
Possible discrimination in school and community settings often arises from the shock and fear of not knowing what to do during an epileptic seizure.
Evaluation and psychological support are recommended right from the diagnosis and during the most delicate phases of the treatment process: this is the so-called “baseline”, the initial evaluation from which to start to monitor the course of epilepsy over time and the cognitive and neuropsychological development and functions such as attention, memory and language.
Difficulties in adaptation or emotional disturbances may occur at diagnosis or during the course of treatment, therefore psychological support is necessary.
It is necessary to repeat the psychological assessment over time, especially during the child’s growth stages and during important changes in therapy, in order to predict the most appropriate type of psychological support.
Psychological support is indicated to promote
- Reinforcement and adaptation mechanisms;
- Adherence to the therapies and indications of the neurologist;
- The reduction of fears and anxieties related to crises;
- The protection of the child from social isolation and from emotional and behavioral disturbances.
From an initial psychological evaluation, possible psychological therapies will emerge, such as
- Support interviews with parents;
- Psycho-educational or parent-training therapies, to be combined with the most widespread rehabilitation treatments (physiotherapy, psychomotricity, speech therapy);
- psychotherapy;
Focus groups or mutual aid and support groups and empowerment projects for conscious participation in care management.
Comparing oneself in a group promotes personal psychological adaptation strategies, comfort and resilience, i.e. the ability to react in the face of difficulties.
The crucial issues for adolescents who find themselves living with epilepsy are autonomy, the future and acceptance by peers.
Talking about it transforms the group and social relationships into a tool of protection, awareness and information and makes the places frequented by the kids themselves (school, sport, travel) more reassuring.
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