Epilepsy is a chronic neurological condition characterized by recurrent seizures (World Health Organization, 2019). Although approximately 1 in 26 people will develop epilepsy within their lifetime, the public’s basic knowledge of this health issue is lacking and social stigma remains prevalent (England et al., 2012). Stigma towards epilepsy is harmful because it perpetuates negative beliefs and attitudes, which may decrease a person’s likelihood to seek treatment (Morrell, 2002). Misunderstandings about epilepsy contribute to decreased quality of life (QOL), including increased psychological and social dysfunction (World Health Organization, 2019). Epilepsy may be associated with physical risks (e.g. head injury from a fall while seizing), less independence (e.g. limitations on driving), employment issues, limited educational attainment, and financial stress (England et al., 2012).
A socio-ecological framework is useful to identify the risk and protective factors across various levels of influence, which impact the progression and management of epilepsy. Epilepsy is influenced by the social determinants of health, particularly low socioeconomic status (SES); researchers in the United States found that approximately half of the adults with active epilepsy had an annual family income of under $25,000 (US Centers for Disease Control and Prevention, 2016). In terms of sex and age, women of childbearing years face unique challenges related to antiepileptic drug (AED) interactions with pregnancy and potential teratogenic effects (Liporace & D’Abreu, 2003). Epilepsy is also linked with higher rates of physical and psychiatric comorbidities, substantial morbidity and mortality, and increased healthcare utilization (Centers for Disease Control and Prevention, 2013). In fact, having one or more seizures within the past 5 years as opposed to seizure freedom showed a remarkable increase in risk for mood disorders, decreased QOL, greater stigma, and limitations on education and work opportunities (Josephson et al., 2017). Although there are various seizure types and degrees to which seizures impact daily life, Becker et al. (2021) discovered that patients typically considered 3.6 seizures per year to be “in control.”
Uncontrolled seizures are dangerous and are associated with higher rates of injury and premature death compared to the general population (Josephson et al., 2017; Luedke et al., 2019). Understanding the precipitating factors or triggers for seizures can improve safety (Bishop & Allen, 2007). People with epilepsy may have poor medication adherence due to AED side effects (e.g. dizziness, fatigue, and cognitive impairment), poor health literacy, low SES, comorbid cognitive and psychiatric disorders, and insufficient social supports (Tian et al., 2018). Therefore, proper epilepsy management is crucial to decrease the frequency and severity of seizures, and ideally reach seizure freedom. People with epilepsy need to prioritize seizure control and management of their chronic condition, otherwise they will more likely experience breakthrough seizures, increased hospital admissions, and mortality (Samsonsen et al., 2014; Devinsky et al., 2018). Discovering what prompts an individual to take action is necessary when developing a health promotion project that targets epilepsy management. The health belief model (HBM) is useful at the individual level because it explains how an individual’s opinions about risks and seriousness of a threat influence their actions (Champion & Skinner, 2008). The HBM predicts adoption of a new health promoting behaviour when the person perceives the benefits of the advised actions to be plentiful, and the barriers to be minimal (Champion & Skinner, 2008). Overall, a holistic approach to better epilepsy management seeks to strengthen a person’s belief in their ability to achieve goals, avoid seizure triggers, adhere to medication, and understand their condition whilst eliminating stigma (Luedke et al., 2019).
Health Promotion Intervention
The proposed health promotion intervention is epilepsy self-management training that provides how-to-information, promotes awareness, activates readiness to change, and builds confidence to take action. According to the Institute of Medicine (2012) self-management is defined as “the systematic provision of education and supportive interventions by healthcare staff to increase patients’ skills and confidence in managing their health problems, including regular assessment of progress and problems, goal setting, and problem-solving support.” Participants will have consultations with an epileptologist every 6 months for 2 years, either in-person or virtually, and complete the 31 items quality of life in epilepsy inventory (QOLIE-31). QOLIE-31 examines emotional wellbeing, social functioning, energy/fatigue, cognitive functioning, seizure worry, medication effects, and overall quality of life (Cramer et al., 1998). Fortunately, cross-cultural translations of QOLIE-31 exist in many other languages, including French, to help with accessibility (Cramer et al., 1998). It is important to consider barriers as this has been shown to be the single most powerful predictor to adopt a healthy behaviour across studies of the health belief model (Champion & Skinner, 2008). For some people with epilepsy, self-management is complicated by traumatic brain injuries, cognitive impairments such as impulse control issues, depression, and low levels of education or health literacy (Luedke et al., 2019). The rationale for self-management training in epilepsy is to empower people with epilepsy and their caregivers to address the challenges associated with the condition and improve QOL. A robust self-management intervention will focus on education, psychological and social supports, lifestyle changes, and medical management.
Participants will learn up-to-date information about epilepsy, symptom monitoring, and decision-making skills related to safety promotion (e.g. driving regulations) (Luedke et al., 2019). The epileptologist will provide an infographic highlighting key messages about seizure prevention and epilepsy management to ensure participants develop an accurate perception of risk. Participants will be directed to community resources (e.g. advocacy organizations). Relevant resources including peer support groups and forums will improve social networks and help change the social environment through stigma reduction to promote greater acceptance (US Department of Health and Human Services, 2005). To further nurture psychological wellbeing, the self-management program will provide key findings about stress reduction techniques (e.g. mindfulness) and good sleep hygiene (e.g. consistent sleep schedule) (Luedke et al., 2019). Sleep deprivation is a significant trigger for seizures (Luedke et al., 2019); therefore, skills on how to improve the quality of sleep will help participants manage epilepsy. The effects of alcohol misuse, flashing lights, and prolonged screen time (e.g. playing video games) will also be described so participants understand their relevance and how to avoid these common triggers. Lastly, the self-management training must emphasize the importance of following a medication regime and how pharmacological interventions modulate brain activity in simple terms. Participants will be encouraged to use self-monitoring tools (e.g. seizure diary and wearable devices) to track and manage seizures, as this data will guide treatment plans.
Target Population
The target audience for this health promotion project will be British Columbians with a diagnosis of new or chronic epilepsy that are at least 18 years old, regardless of racial or ethnic background, SES, or gender. Waitlisted patients for the province’s Seizure Investigation Unit will be invited to participate. Moreover, epileptologists can invite their patients to this self-management training with regular QOLIE-31 assessments. The exclusion criteria will be those with psychogenic non-epileptic seizures, severe learning disabilities, significant mental illness (e.g. schizophrenia), and children. In addition to people with epilepsy in need of ongoing seizure management, the target population will also include caregivers (i.e. close friends or family member) because they play a supportive role and can help promote healthy behaviours. Participants with epilepsy may identify a trusted caregiver to participate in the training alongside them. Caregivers benefit from improved knowledge on how to enhance seizure control, access services, and reduce stigma (England et al., 2012). This project will incorporate multiple stakeholder perspectives (e.g. epileptologists, neurophysiology technologists, and nurses) since healthcare professionals impact the implementation and adoption of epilepsy self-management interventions (Lewinski et al., 2020).
Conclusion
Poor epilepsy management interferes with daily life. People with epilepsy may have a higher reliance on others for assistance and experience psychological changes such as anxiety and depression, which further impact quality of life. Ultimately, the vision of this health promotion project on epilepsy self-management is optimal seizure control and improved quality of life that is free of stigma.
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