By: Stefania Pierce
WELL-BEING IN PEOPLE WITH EPILEPSY
Individuals living with epilepsy often face challenges such as social stigma and cognitive or mental disorders. These difficulties create barriers to education, employment, and personal relationships, affecting people with this disorder’s overall quality of life. However, despite these challenges, there is hope. Self-management strategies and social support systems have been shown to have significant outcomes in improving the well-being of individuals with epilepsy. Through a combination of proper health care, lifestyle adjustments, and community awareness, people with epilepsy can lead fulfilling lives.
Epilepsy affects 50 million people globally (Alabi et al. 2023) and is not only a disorder that includes a predisposition to seizures but also comes with neurobiological, cognitive, psychological, and social comorbidities (Yogarajah and Mula 2019). There are three areas of the multidimensional perspective for patients with this affliction: The physical component, consisting of the frequency and severity of seizures, the side effects of medications, and other physiological effects of epilepsy. The mental health component includes anxiety, depression, emotional well-being, and cognition. Social well-being involves participation in social activities, level of independence, and the perception of stigma from family and friends (Yogarajah and Mula 2019). Research has shown that people with epilepsy experience higher levels of psychological distress, which affects their overall physical, social, and mental well-being (Alabi et al., 2023). The multifaceted effects associated with epilepsy require the active participation of the individuals in coping with the social, health, employment, and economic challenges of the condition (Pandey et al. 2020).
Mental well-being can be characterized as contentment and a positive sense of self even when a person is apprehensive about establishing interpersonal partnerships, the capability to accomplish their goals, their ability to be independent, or to discover purpose in life (Alabi et al. 2023). Several factors have been identified as influencing mental well-being in individuals with epilepsy. Physically, the frequency of epileptic seizures and the perceived physical impact it has on one’s life are negatively correlated with life satisfaction (Alabi et al. 2023). Psychologically, excessive nervousness, depression, and greater perceived stigma around the condition are associated with lower quality of life in persons with epilepsy (Alabi et al. 2023). In regards to the social sphere, it has been found that unmarried individuals, as well as unemployed people living with epilepsy, report lower life satisfaction and an overall lower quality of life.
POSSIBLE REASONS
Deficiencies in social cognition are linked to a lower quality of life in people with epilepsy. Epileptics have been found to have less social engagement overall and less rewarding relationships when they do engage socially, affecting the quality of life they perceive for themselves (McCaugh et al., 2009; Dodrill, 1986). Social cognition is defined as the type of information processing that contributes to the perception and interpretation of the mental states, dispositions, and intentions of others (Steiger, Jokeit 2016). Neurocognitive issues such as impairments in attention, memory, language, and processing speed contribute to problems with social cognition and social functioning, making it more difficult for individuals with epilepsy to maintain supportive social relationships (McCaugh et al 2009). The higher rates of depression and anxiety amongst these individuals also impact patients’ ability to function socially and can contribute to poor coping abilities in times of stress (Schacter, 2006). Some of the social cognition deficiencies seen in individuals are due to the underlying neurological damage caused by seizure activity, but many social factors are negatively correlated with social cognition functioning in people with epilepsy. Deficiencies in social well-being are linked to parental overprotectiveness as a child, stigmatization, reduced life experience opportunities, and fear of seizures (McCaugh et al. 2009). Examining these factors and developing plans to mitigate the negative social effects they can have on a person provides an excellent place for further research, as bettering the lives of these individuals will take a holistic approach.
Many epileptics find the psychological problems associated with the condition are often more handicapping than the seizures themselves (Livingston 1981). Individuals with epilepsy often experience issues in mental processes that can affect their ability to cope with their condition and engage in social interactions. They have been found to have lower rates of employment (Jalava Sillanpää 1997), often because employers are reluctant to hire someone with epilepsy due to a misunderstanding of the condition. (Leppik 2007) This further exacerbates the negative psychological and social effects of this condition as it may lead to individuals feeling ostracized from their community, leading to a worse quality of life.
WHAT CAN WE DO?
People with epilepsy report stress as their most common trigger, some even believing it caused their disease in the first place. (Galtrey et al. 2016) Studies have shown that CBT and mindfulness-based therapies are effective in reducing stress, decreasing rates of depression, and increasing seizure control for patients (Lai et al. 2021). General mindfulness therapy can be beneficial for individuals with and without epilepsy alike. The specific benefits found to help patients with epilepsy focused on reframing negative thoughts associated with the condition. The mindfulness therapy found to be associated with greater psychological well-being in epileptics focused on reframing the negative feelings associated with seizures into one of recognition and acceptance by embracing a deep understanding of how things are (Lai et al. 2021). Self-administered stress management techniques have also proven to be successful in improving the overall quality of life for people dealing with this condition. This could look like engaging in relaxation techniques throughout the day or practicing meditation to soothe the mind (Rostad and Ghearing 2022).
The same thought process can be used to better stabilize the self-image of these people. Research has shown that a large discrepancy between perceived self-image now and anticipated self-image without epilepsy correlates with low self-worth and vice versa (Collings 1990). Low well-being was found to be moderately associated with high seizure frequency, ratings of uncertainty over diagnosis, recency in the development of seizures, a diagnosis of absence seizures, and being employed full time (Collings 1990). Therapeutic practices that work on reframing the image of the self, therefore, can prove to be especially beneficial for individuals with epilepsy. A common suggestion from therapists in the journey to a better self-image is self-compassion. Self-compassion is described as the ability to be caring to oneself in the face of difficulty and is especially important for people with epilepsy, who may have many physical and psychological issues that are completely out of their control (Alabi et al. 2023). Focusing on self-compassion can help individuals with epilepsy accept their condition as well as feel hope for their future, directly benefiting their overall health. Research also suggests that self-compassion significantly moderates the direct relationship between perceived stigma (of epilepsy) and mental health in individuals with epilepsy (Alabi et al. 2023).
Another great step to reducing stress is prioritizing personal safety. The best way to do this is by educating those around you on what to do in case of a seizure (Leppik 2007). It is also important to have an epilepsy medical bracelet or chain to alert others of your condition if there were to be a medical emergency in public (Leppik 2007). Service dogs have also proven to be a beneficial tool in predicting oncoming seizure activity or providing benefits by responding to someone having a seizure. While seizure detection is not the most reliable, dogs have been shown to help patients cope with their chronic conditions, which could help reduce seizure frequency and better the lives of people with epilepsy (Leppik 2007). There are also many other, more reliable seizure monitoring techniques available to individuals with epilepsy, such as mattress devices that can be used to alert caregivers of abnormal movements.
Exercise has been shown to moderately improve quality of life, reduce seizure frequency, and reduce perceived stigma, with the assumption that the types of sports engaged in are safe for individuals with epilepsy (Rostad and Ghearing 2022). Participation in youth sports especially is incredibly important, as it helps to foster social connections at a young age. Respecting the limitations of the condition, for example, deep sea diving would not be a good sport for a person with this condition to engage in, providing the epileptic person a community outside of their direct family, which helps them to better cope with the challenges they face (Leppik 2007). Getting an adequate amount of sleep is also incredibly important as it is found that getting more sleep reduces the risk of seizures to appropriate levels (Leppik 2007).
The Institute of Medicine defined self-management support as “the systematic provision of education and supportive interventions to increase patients’ skills and confidence in managing their health problems, including regular assessment of progress and problems, goal setting, and problem-solving support” (Rostad and Ghearing 2022). Many self-care interventions have been studied as tools to help improve the quality of life for individuals with epilepsy. In a world that increasingly relies on technology in our everyday lives, an accessible internet-based self-care intervention has proven extremely effective in monitoring symptoms associated with epilepsy. The newest app, supported by the Epilepsy Foundation as an effective tool for managing this disease in a self-care setting, is called Nile AI and allows patients to log seizures, track medications, and get custom content related to their symptoms (Rostad and Ghearing 2022). Understanding which areas of the brain are affected by an individual’s seizure condition is incredibly important in examining which careers would be suited for them (Leppik 2007).
Many programs have been developed to help epileptics access resources to improve the physical, psychological, and social dimensions of their health. Regarding accessing employment opportunities, the Americans With Disabilities Act (1990) includes people with epilepsy and prevents discrimination within the workplace. It also requires appropriate accommodations to be provided within any work environment (Leppik 2007). If an individual’s propensity for seizures makes it impossible to maintain a steady career, social security is also available to provide financial support (Leppik 2007). The Center for Disease Control (2007) established the Managing Epilepsy Well (MEW) Network in an attempt to improve the quality of life for these individuals. The Managing Epilepsy Well Network provides information to patients and community health workers on how individuals or institutions can participate in evidence-based self-management programs to help create an overall better quality of life for people with epilepsy (Rostad and Ghearing 2022).
More specialized programs have been developed to help mitigate specific factors associated with less well-being and a lower quality of life in people with epilepsy. For example, the Home-Based Self-Management and Cognitive Training Changes Lives Program (HOPSCOTCH) provides strategies to address the cognitive difficulties associated with seizures or the accompanying side effects (Rostad and Ghearing 2022; American Epilepsy Society). This 8-week program typically provided one with a licensed mental health counselor, has proven to be effective in improving cognitive performance in epileptics (American Epilepsy Society). It features lessons on how to improve memory function as well as provides information on how to cope with seizure-related memory issues (American Epilepsy Society).
The Program of Active Consumer Engagement in Self-Management in Epilepsy (PACES), on the other hand, focuses on helping individuals understand their condition, manage their stress, and develop strategies to improve their overall mental and physical health, not specific to cognitive or memory function. The PACES program, typically completed in approximately eight weeks, has seen significant improvements in quality of life across many domains, including social abilities (Rostad and Ghearing 2022; Epilepsy Foundation Central & South Texas). The Self-Management for People with Epilepsy and a History of Negative Health Events (SMART) is an evidence-based behavioral intervention designed to enhance self-management skills among adults with epilepsy, particularly those belonging to disadvantaged groups. (American Epilepsy Society) This program emphasizes the development of skills to handle stress, improve mental health, and enhance overall quality of life, as well as a specific focus on serving marginalized groups. This program is typically conducted in group settings and has been found to reduce health complications and improve mood and quality of life (Rostad and Ghearing 2022).
The PAUSE to Learn Your Epilepsy (PAUSE) Program, a Managing Epilepsy Well network collaboration center, was developed to address the needs of those with epilepsy by providing information from the Epilepsy Foundation’s website to provide a patient-centered epilepsy self-management lesson plan. This wireless electronic-based educational initiative provides personalized support and information aimed to empower individuals with epilepsy to take an active role in managing their condition. (University of Illinois College of Medicine) The PAUSE intervention includes education to improve lifestyle, seizure control, safety, and medication and is shown to improve wellness in all aspects of a person’s life. (Pandey et al. 2020)
Epilepsy is a complex condition that affects millions of people worldwide, influencing not only their physical health but also their psychological and social well-being. While individuals with epilepsy may face significant challenges, there is substantial hope for improvement. Research has demonstrated that self-management strategies, therapy, lifestyle modifications, and strong support systems can greatly enhance the quality of life for those living with epilepsy. It has been shown that there are numerous resources available to help individuals manage this condition effectively. With continued research and advocacy, people with epilepsy can continue to thrive. By focusing on education, self-care, and community involvement, people with epilepsy can lead fulfilling lives, proving that a diagnosis does not have to define one’s potential or well-being.
References:
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