Epilepsy is a chronic neurological disorder that involves recurrent seizures with various precipitating factors and affects approximately 1 in 26 people during their lifetime (England et al., 2014; WHO, 2019). Uncontrolled seizures are dangerous because they can cause serious mental and physical harms such as depression, bone fractures, suffocation, and head injuries (Josephson et al., 2017). People with epilepsy are three times more at risk of premature death than the general population (WHO, 2019). Persistent or repeated seizures, known as status epilepticus, may be life threatening when left untreated (Josephson et al., 2017). Re-occurring seizures can damage neurons and result in cognitive decline, progressive memory loss, and other neurological problems (Laxer et al., 2014). Successful epilepsy management to reduce seizures includes medication adherence, avoiding seizure triggers, self-monitoring (e.g., seizure diary or wearable device to track seizures), and social supports (Luedke et al., 2019; Tian et al., 2018). The rationale for epilepsy-self management training for people with epilepsy and their caregivers is to improve quality of life through seizure reduction and empowerment. This paper describes an epilepsy self-management model (ESMM) influenced and guided by the health belief model (HBM) and socioecological model (SEM) to address the treatment gap, consequences of seizure control on quality of life, and the social determinants of health in epilepsy. Discrimination and stigma related to misconceptions about epilepsy can result in social exclusion, employment issues, and avoidance of healthcare (WHO, 2019). The ESMM uses an equity, diversity, inclusion, and accessibility lens to highlight unfair disadvantages related to social identity and can be used to ameliorate health promotion in epilepsy (see Figure 1).
Models Influencing the Design of the Epilepsy Self-Management Model
The ESMM is influenced by the HBM and SEM to ensure health promotion efforts improve access to care, data collection, seizure control, health literacy, social cohesion, and quality of life for people with epilepsy (PWE) and their caregivers.
Health Belief Model
The HBM predicts human behaviour based on perceptions of susceptibility, severity, benefits and barriers (Champion & Skinner, 2008). Culture and other aspects of social identity influence the desirability of certain treatment options and alter opinions about risks and benefits. For example, traditional views about the usefulness of anti-epileptic drugs (AEDs) impacts medication compliance (Mutanana, 2020). Non-Western cultures have a higher prevalence of epilepsy-related stigma and social isolation (Szaflarski et al., 2006). In some non-Western cultures, the belief that epilepsy is caused by evil spirits dictates disease management strategies (Mutanana, 2020). Non-Western populations are more likely to opt for alternative or indigenous treatments than AEDs or advance treatments including vagal nerve stimulation, deep brain stimulation, or brain surgery (Feagin, 2017; Szaflarski et al., 2006). Feagin (2017) suggests that this difference exists due to historical context of racism and mistreatment of minorities leading to distrust and higher perceptions of risks associated with advanced treatments. Applying the HBM to the design of an epilepsy self-management program involves education around realistic goals and the threat of uncontrolled seizures; changing health behaviour requires modifying beliefs and attitudes about the disease and strategies to decrease its occurrence (Mutanana, 2020). The HBM’s concepts of self-efficacy and cue to action explain how a series of decisions are triggered (Champion & Skinner, 2008). An empowered person who is motivated to change through a cue to action (e.g., internal cues such as pain or external cues such as support from social networks) is more likely to have a sense of self-mastery and succeed in implementing the change (Szflarski, 2014). Witnessing convulsions and suffering associated with seizures can act as a cue to action for caregivers (Mutanana, 2020). The HBM considers individual needs and perceptions to promote informed choice and achieve full health potential.
Socioecological Model
Understanding and targeting the social determinants of health will improve population health. Health is modified by a complex interplay between social, economic, political, environmental, and biological factors (Szaflarski, 2014). The SEM explains how health status is impacted across various levels of influence (Szaflarski, 2014).
Individual Level
At the individual level, socioeconomic status (SES) is inversely correlated with epilepsy prevalence (Schiariti et al., 2009). Explanations for higher rates of epilepsy in lower SES British Columbian children include higher rates of asphyxia at birth, premature birth, infections, and head trauma (Schiariti et al., 2009). Compared to the general population, PWE are less likely to complete secondary or postsecondary education which limits employment opportunities and lowers household incomes (Burneo et al., 2009; Schiltz et al., 2013). This results in a phenomenon known as the SES-health gradient involving worse health outcomes (e.g., psychological distress) related to socioeconomic deprivation (Szaflarski, 2014; Lewinski et al., 2020).
Comparing health outcomes between races (i.e., socially constructed groupings based on observed phenotypic differences such as being black or white) does not reveal differences in status epilepticus or mortality (Szaflarski, 2014). However, racial differences exist in terms of epilepsy risk factors (e.g., history of stroke or diabetes), emergency room visits, AEDs non-adherence, and epilepsy surgery rates, with non-white individuals having more burdensome effects (Dunlop et al., 2003; Szaflarski, 2014).
Epilepsy health promotion initiatives that target the adult population must consider the increasing amount of co-morbidities with age and complex chronic disease management. Young adults with epilepsy frequently have asthma, migraines, or cerebral tumours and as they become elderly, they are more likely to experience stroke, dementia, cardiovascular disorders, and meningiomas (Gaitatzis et al., 2004). Major depressive disorder and cognitive limitations are common co-morbidities seen in up to 50% and 20% of PWE, respectively (Duke et al., 2021). Cognitive limitations may be associated with decreased health literacy, resulting in lower medication adherence (Tian et al., 2018). Pharmacological interventions involve sex-specific interactions with AEDs that complicate epilepsy care in women. Some AEDs are teratogens and can damage an unborn child, create childbearing issues, or cause nutritional deficiencies (Elliott et al., 2008; Liporace & D’Abreu, 2003; Thompson et al., 2005). These concerning consequences contribute to women being half as likely to use AEDs than men (Szaflarski, 2014). Therefore, it is crucial that women be informed of the different types of AEDs and their risk profile related to pregnancy. The ESMM ensures health promotion efforts are tailored to the individual so AEDs and education are relevant (see Figure 1).
Relationship Level
Effective epilepsy care requires transparency between PWE and their care team; lack of disclosure may be related to poor memory (i.e., difficulty recalling information) or fear of reporting as it may impact their ability to drive (Becker et al., 2021). Open communication with family, friends, and healthcare providers reduces social isolation and stigma, thereby reducing epilepsy symptoms and improving continuity of care (England et al., 2012; Mlinar et al., 2016).
Community Level
Knowledge about treatment options is enhanced when PWE and their caregivers are linked to advocacy organizations and support groups with similar interests (England et al., 2012). Connection at the community level reduces feelings of being isolated from the social environment (Szaflarski, 2014). The physical environment also plays a role in epilepsy management as PWE are more likely to complain of lower quality living conditions and less likely to describe their neighbourhood as safe (Szaflarksi, 2014). The physical environment can expose people to hazards ranging from domestic violence to pollution (Szaflarski, 2020). PWE living in rural settings are less likely to visit a physician, be referred to a specialist, or be admitted to an epilepsy centre for surgical workups, which contributes to health inequity (Bethea et al., 2012; Meit et al., 2014).
Societal Level
Since the declaration of the Ottawa Charter of Health Promotion in 1986, leaders in healthcare have highlighted the importance of health equity in policy development and shaping environments to reduce health disparities (Golden et al., 2015). As a society, collective action is needed on policy achievement that emphasizes preventing negative health outcomes. For example, laws about bicycle helmet requirements and seatbelt use support brain health (England et al., 2012). Moreover, effective helmet design minimizes the risk of traumatic brain injury, which is particularly useful in sports and military combat (England et al., 2012). Public policy for brain injury prevention efforts is a layer of protection against the development of epilepsy (England et al., 2012). Population health can be promoted at the societal level through various means including tax policies, minimum wage laws, zoning ordinances, resource distribution, hazardous exposure reduction, communication systems, and transit services (Golden et al., 2015). A reliable public transit system is particularly relevant in epilepsy since many PWE have driving restrictions which impact their ability to attend appointments, social gatherings, or employment opportunities (Josephson et al., 2017; Lewinski et al., 2020).
Mobilization and political activity that lead to policy changes help reduce health disparities and allow PWE to freely participate in the public sphere (Golden et al., 2015; Szaflarski, 2020). Applying pressure to prioritize epilepsy research and epilepsy care on political agendas will improve resource allocation and de-stigmatization (WHO, 2019).
Equity, Diversity, Inclusion and Accessibility
A person’s position in society and social identity (e.g., race, ethnicity, religion, gender, age, sexual orientation, and socioeconomic status) may result in unfair disadvantages (i.e., oppression) that hinder health outcomes (Nixon, 2019). To prevent the health gap from expanding it is important that people, including those with unfair advantages (i.e., privilege), engage in critical allyship and focus on the impact of actions over the intent behind them to address systems of inequality (Nixon, 2019). Socially determined circumstances may worsen seizure control; therefore, the ESMM emphasizes personalized supports that consider an individual’s social identity (see Figure 1).
Prejudice, stereotypes, and stigma are significant barriers for PWE, which can weaken social networks, create social distrust, trigger self-isolation, increase psychopathology, and decrease quality of life (Mlinar et al., 2016). Social inclusion is a protective factor that enables full participation and contribution by creating an environment that everyone is welcomed, safe, respected, supported, and valued (Barker & Vasseur, 2021). This health promotion project and ESMM aims to connect people with epilepsy and their caregivers to people with similar life experiences to increase their social network size (See Figure 1). Advocacy organizations, epilepsy societies, and epilepsy support groups are important stakeholders as their feedback can guide the direction of the program to ensure its relevance. Stakeholder engagement may result in discovering trends, wants, needs, and assets within the community (Ontario Agency for Health Protection and Promotion, 2015).
Epilepsy self-management and learning new skills may be complicated by unique needs related to traumatic brain injuries, mood disorders, impulse control issues, cognitive impairments, and low health literacy levels (Lewinski et al., 2020; Luedke et al., 2019). Health literacy is the ability to gain health knowledge needed for informed decision-making related to disease management; poor health literacy is associated with underutilization of health services and poorer clinical outcomes including increased mortality (Szaflarski, 2014). Therefore, it is important to make accommodations to meet the needs and preferences of people with disabilities to support participation and empowerment (Barker & Vasseur, 2021). By tailoring the training to the individual and using simple language instead of medical jargon, it is less likely that the messages will be misunderstood. According to Becker at al. (2021), a third of caregivers and PWE did not understand terminology used by medical professionals during their meetings. Accessibility is improved by offering translation services and using the 31 items quality of life in epilepsy inventory, which is available in many languages (Cramer et al., 1998). Regular assessments and listening to understand may reveal barriers to seizure control that must be remedied, such as depression (Sajatovic et al., 2019). Asking the target audience about their needs and seeking feedback is part of an effective community engagement strategy.
Figure Description
The figure depicting the ESMM integrates the strengths of the HBM and the SEM to provide a framework for interventions to have a high degree of personalization for effective epilepsy management to improve quality of life and positively impact health equity (see Figure 1).
The spheres of stakeholders are similar to the levels of influence from the SEM. At the centre of the ESMM is the PWE. Their individual needs and social determinants of health must be considered to facilitate health equity. Personalization of health promotion efforts requires exploration of intersectionality to adequately reduce barriers to access healthcare and social services. Telemedicine is linked to impacts on health equity as it connects PWE far from urban centres to epilepsy specialists, as long as efforts are made to improve digital literacy and access to electronic devices and internet (Blumberg et al., 2021). The proximity of the sphere around the PWE containing caregivers indicates the closeness of this relationship. Data collection involving self-monitoring and transparency connects the PWE and caregivers to healthcare providers. Harnessing the power of technology, such as wearable devices to track seizures and heart rate, will improve data collection; combining quantitative and qualitative data gathered from self-reports in seizure diaries and activity logged by technological devices ensures comprehensive, timely, and accurate epilepsy surveillance (England et al., 2012). This information allows healthcare providers to tailor education and consider accessibility related to cognitive ability.
To ensure culturally sensitive care, healthcare providers must reflect on implicit biases; the social determinants of health cannot be addressed without understanding the impacts of implicit biases (Maina et al., 2018). Similarly, self-reflection by caregivers and PWE to reveal unconscious bias will support open communication with healthcare providers. Discussions about lived experience can improve the personalization of education. Furthermore, community member’s diverse perspectives influence education programs. The community sphere is encompassed by safety, since this is a vital component of healthy physical and social environments. The ESMM views engagement with the community to improve social cohesion. Strong social networks with the community increase the likelihood of raising awareness about epilepsy. Widespread awareness will minimize discrimination including in the workplace, which translates to PWE finding employment more easily (Cianchetti et al., 2015; Jennum et al., 2011). This reduces the social disadvantages associated with epilepsy, especially the influential social determinant of health of socioeconomic status. The community influences the sphere of society, which includes public policy and agendas related to research and politics. The society sphere is connected to PWE and caregivers through inclusion; improving subjective perceptions of inclusion can strengthen contributions to society in an economic, social, psychological, and political sense (Merton & Bateman, 2015).
The ESMM depicts knowledge acquisition influencing perceptions resulting in cues to action that foster empowerment and self-efficacy to improve seizure control. Building self-efficacy and creating cues to action motivate PWE and their caregivers to implement and sustain behavioural changes (Rideout, 2015). The important types of perceptions in the ESMM are guided by the HBM to include susceptibility, severity, benefits, and barriers. Modifying these perceptions can support adoption of health promoting behaviour. According to the ESMM, perceptions are impacted by healthcare providers through health literacy, the community through social support, caregivers and PWE through tailored education, and society through de-stigmatization. Concealing epilepsy can lead to a cycle of secrecy and antisocial behaviour (Mlinar et al., 2016). The harms of social deprivation and shame are minimized by the ESMM’s approach to strengthen social contacts and increase epilepsy awareness.
Figure 1
The Epilepsy Self-Management Model
Conclusion
The proposed ESMM guided by the strengths of the HBM and SEM ensures health promotion efforts will effectively control seizures, reduce stigma, and improve quality of life. The ESMM explores how individual and collective actions influence seizure frequency and severity. This model incorporates multiple stakeholder perspectives to integrate feedback from local governance, requests from community advocates, health expertise from healthcare providers, and personal experience from people with epilepsy and their caregivers. The epilepsy self-management model supports the target audience to adopt healthy behaviours known to promote seizure reduction and thrive in an inclusive society that dismantles systems of inequality.
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