Epilepsy is a neurological disorder which is synonymous with unforeseen seizures that affect multiple domains of an individual’s lives. The impact of the disease is seen among all age groups and it is the fourth most widespread neurological disorder. It has been seen that the stigma and the discrimination attached to the disease by the society is more challenging to handle compared to the physical symptoms. The epileptic seizures tend to affect the personal as well as the professional lives of the individuals and also interfere with common activities such as driving along with the safety of the person.
Key words: epilepsy, psycho-social intervention, seizures
What is Epilepsy
Epilepsy is a chronic neurological disorder which is characterized by unprovoked seizures of recurrent nature. Epilepsy can be confirmed when an individual has had two unprovoked seizures or one unprovoked seizure with the possibility of more in the future. The pre-requisite factor to diagnose epilepsy is that the seizures should not be caused by alterable factors such as alcohol withdrawal and reduced blood sugar to name a few.
A notable aspect about epilepsy is that the person diagnosed with the same is likely to have different types of seizures along with the symptoms of other neurological diseases. Every part of the body is susceptible to get affected by the epileptic seizures however; the brain is the organ where the electrical occurrences that lead to the production of the symptoms are originated.
Types of Seizures
Seizures are usually classified into two broad categories: generalized seizures and focal seizures. The International League against Epilepsy has further specified the types of epilepsy in order to ensure that the diagnosis, treatment and intervention are foolproof and effective. The seizures are described according to the following parameters:
(a) The onset of a seizure- It is essential to know about the onset of a seizure in order to provide the appropriate treatment to the patient. The beginning of a seizure in the mind of an individual largely determines the symptoms that will be seen in the individual, the ways in which the seizure impact the life of an individual and sets the ball rolling for the appropriate treatment after considering the aforementioned factors.
(b) Level of awareness of the affected individual during a seizure- The type of seizure that occurs is greatly determined by the awareness or the lack of awareness of the individual. The safety of the individual is also determined by the same factor.
(c) The occurrence of movements in the wake of a seizure- There are certain seizures where movement does not take place and such seizures are known as non-motor seizure. The presence or absence of movement is not the most prominent parameter to classify seizures however; can prove to be instrumental in certain specialized cases.
The three major categories of seizures are:
(i) Generalized onset seizures- These seizures impact the cells present on both the sides of the brain simultaneously.
(ii) Focal onset seizures- The word focal is used in order to denote the area which marks the commencement of a seizure. The focal onset seizures start from one side of the brain. The reason behind the usage of the term focal over partial is to give clarity with respect to the point of origin of the seizure.
(a) Focal onset aware seizure- In the case of focal aware seizure, the individual is awake and aware in the wake of a seizure.
(b) Focal onset impaired seizure- The category is used in instances where the individual is either confused or the awareness of the individual is hindered due to certain reasons.
(c) Unknown onset seizures- These refer to the seizures whose onset cannot be traced. The term also extends to the seizures which are not seen by others. Such cases are common when the individual lives alone or during the nights.
Causes of Epilepsy
It has been found out that the cause of epilepsy cannot be determined in 60% of the cases. The following are some of the causes that lead to epilepsy:
(a) Traumatic brain injury
(b) The brain getting scarred post a brain injury
(c) Extremely high fever or any other fatal illness
(d) Stroke which is the leading cause of epilepsy in people above 35 years of age
(e) Vascular diseases
(f) Lack of oxygen in the brain
(g) Dementia and Alzheimer’s disease
(h) Brain tumor
Triggers refer to the occurrences that take place on a regular basis before the ailment (in this case, the ailment is epilepsy). It is of paramount importance to recognize the triggers as the impact of the seizure can be considerably lessened once the trigger is known. Knowledge of the trigger helps to prepare for the seizure in advance which curtails the damage to an extent. Seizures occur either when people are exposed to certain situations or they can also have a pattern of occurrence. There are certain triggers which are easily identifiable case in point being when the seizures only take place when an individual is fast asleep. There are also some triggers which emerge only at certain points of time especially when an individual exudes loads of stress. Some triggers that are commonly associated with seizures are low blood sugar, alcohol or drug use, any form of illness, stress, lack of adequate hours of sleep, hormonal changes, usage of certain medicines etc. The individuals who are diagnosed with reflexive epilepsy may have seizures in response to certain situations only. To cite an example, people who have reflex epilepsy may get a seizure only when they are exposed to a particular type of noise (e.g. drilling machine) or visual (e.g. flickering of a light bulb).
The individuals who are diagnosed with epilepsy are encouraged to maintain a seizure diary in which they expected to jot down the details related to the seizures that they experience. The seizure diary is a good way to find out if an occurrence can be categorized as a trigger.
In the past, the diagnosis of epilepsy has been challenging as the occurrence of a seizure can be confused with other symptoms. It is extremely important to diagnose epilepsy in an error free manner as the entire treatment plan is dependent on accurate diagnosis. It is very vital for a person to give the correct description to the medical practitioner with respect to what transpired during a seizure. The description of the seizure needs to be backed by other evidences such as medical tests of the brain in order to find out the causes behind the seizures and identify the root of the problem. Blood tests are conducted to check for infectious diseases, the functioning of the liver and the kidneys and the blood glucose levels.
Imaging tests are strongly recommended to find out about the prevalent tumors and other factors that may be responsible for seizures. The following are encapsulated in imaging tests: CT scan, MRI, positron emission tomography (PET) and single photon emission computerized tomography
Treatment of Seizures and Epilepsy
The fulcrum of the treatment given to epilepsy patients rests on the theory of ‘no seizures, no side-effects’. The treatment related to epilepsy is not confined to medicines alone. Specialized care is recommended to individuals who experience recurring seizures i.e. the seizures resurface after a few months or years post stopping the intake of anti-seizure medicines. Seizure treatment can also be dependent on surgery, diet modification and the use of certain specialized equipments in addition to the medicines in cases where the situation is intense, complex and highly aggravated. A few treatment options related to epilepsy are as follows:
(a) Anti-epileptic drugs- The seizures can either completely stop courtesy these drugs or can reduce in frequency depending on the individual. The individual ought to take the medicines exactly as prescribed by his/her healthcare team.
(b) Vagus nerve stimulator- It is a device which is placed beneath the skin covering the chest. It can be placed via a surgery. The function of the device is to electrically stimulate the nerves that run through the neck.
(c) Ketogenic diet- It is a diet which is low on carbohydrates and high on fats.
(d) Brain surgery- It involves the removal of the part of the brain where the seizure activity takes place.
The part of the brain can also be altered.
Quality care encapsulates early detection of seizures in order to ensure that the situation does not snowball or become unreasonable complicated. The detection needs to be accurate in order to reduce the sufferings of the individual. The health care team ought to evaluate the treatment meted and change the same if the desired results are unmet. The medical team ought to call the individual for periodic reviews post the seizures getting cured. The medical team should enquire about the types of seizures that the individual gets along with finding out about the duration of each of them. The medical team should also find out about the side effects of the medications in order to change the same in case the response of the individual is in the affirmative. The co-morbid factors should also be enquired about while finding out about the occurrence of seizures. The co-morbid factors include depression, developmental issues etc. Quality health has certain cardinal factors namely, (1) safety, (2) effectiveness, (3) being patient centric, (4) timely, (5) efficient, and (6) equitable.
Epilepsy can be managed by the individuals in the following ways:
(a) Seizure Response Plan- The seizure response plan has the necessary personal information of the individuals such as name, gender, age etc. along with having information about the seizures like the duration of the seizures, the occurrences during the seizures, and the frequency of the seizures to name a few. The response plan also contains information about the triggers, the medications provided and the contact information of the medical team and the relatives/friends of the individuals.
(b) To do list- The list comprises the things that the individual is expected to do upon sensing a trigger, during the seizure and also post the seizure. It is always advisable that individuals who have seizures do not live alone. The individual ought to remember the details related to the seizures and he/she is also expected to take the medication as prescribed by the healthcare team.
(c) Medicine Schedule- The individual is expected to maintain a schedule with respect to the intake of medicines. The schedule should entail details of the medicines that the individual is having along with throwing light on the time at which the medicines were taken. The schedule is also supposed to have details about the times when the individual did not take the medicines and the reasons for the same. The healthcare team of the individual is expected to do a periodic review with respect to the schedule.
(d) Lifestyle Modification Tips- The individuals who have seizures/epilepsy maybe suggested certain restrictions by their healthcare team. The restrictions can either be dietary or can also be about the lifestyle adopted by the individuals. The dietary alterations may include the prohibition of salt in excessive quantities along with restrictions on intake of red meat, oil etc. The individuals may also be asked to exercise on a daily basis.
Challenges with respect to Epilepsy
There are certain health problems and conditions that are seen in individuals who get seizures as opposed to the ones who do not. The reason for the same is that the health problems are either caused due to the seizures or due to the factors that cause epilepsy. To quote an instance, mood disorders can either be the side effect of the medications or can be as a result of the frequency of the seizures. It can also be possible that mood disorders exist independently. A few common issues that an individual dealing with seizures may encounter are-
(a) Not being able to concentrate at work and school/college and not bonding well with family and friends,
(b) Learning difficulties that would require special attention,
(c) Sleep related disorders,
(d) Risks associated with death,
(e) Reproductive issues,
(f) Psychological issues such as depression, anxiety etc.
Managing Psychosocial Stress
Pharmacotherapy should only be treated as one of the components with respect to the treatment of epilepsy. The quality of life of the patient along with seizure control is greatly determined by cognitive, physical and psychosocial functioning. The individuals who are diagnosed with epilepsy are often worried about the psycho-social aspects of their lives such as their relationships, security, independence and well-being. It is of paramount importance to find out the social and psychological problems that negatively impact the quality of life of individuals having epilepsy in order to ensure holistic treatment. The key is to find out about details related to the psychosocial components of the patients such as any previous psychiatric illnesses, education, employment, driving, insurance, inter-personal relationships and attitude towards epilepsy. There are several questionnaires which have been made in order to find out about the psycho-social factors in individuals affected by epilepsy so that the assessment can be foolproof.
The psycho-social factors affecting the individuals with epilepsy ought to be indentified in order to help the individuals alleviate their stress. There have been instances where the frequency of seizures has lessened once the psycho-social factors have been identified and worked upon. The individuals are taught relaxation oriented techniques and also methods related to stress reduction.
The help of support groups proves to be handy in epilepsy related cases as experiences are shared and knowledge is gained. Counseling is strongly recommended as well. The counseling can either be on an individual level or at the family level. It is usually recommended that the individuals attend both types of counseling in order to promote holistic healing. The fears of the patients are taken into consideration during individual counseling sessions while the near and dear ones of the individuals are told about the dos and don’ts with respect to epilepsy. The family is also told about the medications and the way they are supposed to be had. The near and dear ones are told about the ways in which they are expected to lend support to the individuals having epilepsy. Vocational training is also helpful for epilepsy affected individuals and so is the provision of educational guidance as the theoretical knowledge related to epilepsy is imparted in the latter while the former is all about the implementation of the theoretical knowledge in the practical domain.
Epilepsy is found to be a spectrum disorder that features several co-morbidities along with negative psycho-social consequences. It has also been observed that effective seizure control need not always result in favorable outcomes. The healthcare team of the affected individuals ought to know the list of potential psycho-social issues that are synonymous with the illness. The following are the domains where psycho-social problems can rear their heads:
(a) Education- It has been found out that the children diagnosed with epilepsy mostly study in regular schools. However, their academic performance is not as strong as the children who do not have epilepsy. Lack of seizure control coupled with early onset of epilepsy results in poor academic performance of children affected by epilepsy. Focal epilepsy in children prevents them from attaining proficiency in reading and writing. The presence of excessive medications and the sleep disrupting seizures that occur at night are other determinants that contribute to poor academic performance in children having epilepsy. Factors such as lack of knowledge about epilepsy, expectations of the teachers and the parents, poor self-esteem and high rate of absence also contribute to the children affected by epilepsy not doing well academically.
(b) Employment - Unemployment and under employment get an impetus courtesy the onset of epilepsy. The challenges with respect to employment stem out due to poor seizure control along with factors such as low self-esteem of the individuals affected by epilepsy, cognitive issues and the discrimination and stigma associated with the disease.
(c) Family life- The coping mechanism of epilepsy affected individuals is greatly determined by the attitudes and behavior of their family members. The impact of epilepsy on the individual’s family cannot be homogenized as it varies widely. Several research articles have shown that the relationship between the parents and the child takes a beating and symptoms of depression are found in the mothers of the individuals. The studies have also indicated that the family does not function the way it used to before the individual was diagnosed with epilepsy. The lack of knowledge about epilepsy among the family members results in social isolation as they choose to cut off from the social circuit fearing negative responses from the society. The parents of the affected individuals are likely to experience anxiety with respect to the death of their epilepsy affected child or a serious injury. It is imperative on part of the healthcare team of the epilepsy affected individual to educate the family about epilepsy by engaging them in family counseling. The families ought to be told to provide emotional support to the individuals and also to ensure that the medicines are taken on time. It has also been seen that whenever the parents have epilepsy, the older children tend to panic and take measures such as not attending school in order to be with their epilepsy affected parents.
(d) Social networks- The skill of an individual to maintain social relationships and the positive outcome of the relationships result in enhancing the quality of life of the epilepsy affected individual. The children who have epilepsy often express their concerns with respect to the inability to develop social support. Research studies have found out that social relationships have brought out positive outcomes with respect to the quality of life, life satisfaction and health status of the epilepsy affected individuals. The positive association between social networks and improvement in the condition of epilepsy patients has been confirmed irrespective of the size of the seizure.
(e) Neuropsychological deficits- There are high chances of cognitive impairment among individuals affected by epilepsy. Memory and social cognition are areas which are greatly impacted by the onset of epilepsy. Employment opportunities and academic success get hampered as a result of epilepsy.
(f) Emotional adjustment- The chances of higher morbidity and mortality multiply as a result of epilepsy. Epilepsy is accompanied by several co-morbidities such as memory issues and also linguistic hindrances. The individuals also have to bear the impact of the seizures which might either be present for a short span of time or for a prolonged duration. Self-confidence and self-esteem take a beating among individuals who are affected by epilepsy. The lack of awareness among the society and the associated stigma add to the tally of woes.
The need of the hour is to spread awareness about epilepsy among the general public in order to eradicate the stigma associated and also to ensure that the individuals affected by epilepsy do not face any social inconveniences. The manner in which the healthcare professionals are trained should be upgraded and campaigns which promote awareness about the illness ought to be conducted on a regular basis and at multiple levels.
Epilepsy is a common neurological disorder that can be managed well courtesy the provision of psycho-social support. The need of the hour is design intervention programs that are holistic in nature and require the combined efforts of the medical team of the affected individuals and the families and friends of the same. The disease is known to get bolstered due to the negative attitude adopted by the affected individuals that can get neutralized to a great extent with the help of adequate social support. The ways in which the individuals affected by epilepsy react to the medical treatment is influenced to a fair degree by the psycho-social support available to them.
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