Open access peer-reviewed chapter

Perspective Chapter: Stigma and Its Impact on People Living with Epilepsy in Rural Communities

Written By

Thendo Gertie Makhado and Lufuno Makhado

Submitted: 31 July 2023 Reviewed: 10 August 2023 Published: 12 October 2023

DOI: 10.5772/intechopen.112867

From the Edited Volume

Epilepsy During the Lifespan - Beyond the Diagnosis and New Perspectives

Edited by Marco Carotenuto

Chapter metrics overview

79 Chapter Downloads

View Full Metrics

Abstract

Epilepsy is a neurological condition affecting millions worldwide, especially in low- and middle-income countries. This condition is poorly understood, and various misconceptions surround it, leading to stigma toward people living with epilepsy (PLWE). In rural areas, cultural beliefs and practices significantly shape attitudes toward health and illness, exacerbating the stigma associated with epilepsy. This proposed book addresses the pervasive stigma experienced by individuals living with epilepsy in rural communities. Through a review of relevant literature and case studies, this chapter examines how stigma affects the lives of people with epilepsy in rural areas. The chapter also explores strategies for reducing stigma, including community-based education and awareness programmes and the role of healthcare providers in promoting understanding and acceptance of epilepsy. In general, this chapter aims to highlight the need for increased awareness and understanding of epilepsy and its impact on those living with the condition in rural communities. It is believed that by tackling the stigma associated with epilepsy and promoting inclusivity, the quality of life of people living with epilepsy may be improved.

Keywords

  • epilepsy
  • stigma
  • rural communities
  • neurological disorder
  • misconceptions

1. Introduction

Stigma is the rejection of or prejudice against a person or group based on attributes that are thought to set them apart from other members of society [1, 2]. Therefore, it means that an individual may be rejected or discriminated against because of their skin colour, conditions, culture, and language. Arias-Colmenero et al. [3]; Aubé et al. [4]; Kwon et al. [5] stated that there are different kinds of stigma which include self-stigma, perceived stigma, social stigma, healthcare practitioner stigma, enacted stigma, and felt stigma and these different kinds of stigma lead to social isolation. Epilepsy, a neurological disorder characterised by recurrent seizures, affects millions of individuals worldwide, making it one of the most common neurological conditions globally [6]. Unfortunately, people living with epilepsy (PLWE) often experience stigma and discrimination due to misconceptions and misunderstandings about the condition [7, 8]. Moreover, this neurological condition is estimated to affect about 50 million people worldwide, and despite its prevalence, it remains a highly stigmatised condition in many societies, including rural communities [9, 10]. In rural communities, cultural beliefs, traditions, and superstitions often significantly shape attitudes toward health and illness [11]. Several misconceptions and myths are attached to epilepsy in different settings, especially rural communities [8, 12]. Some of the misconceptions about epilepsy include that epilepsy is a condition from supernatural powers linked with witchcraft [12, 13]. These misconceptions and myths surrounding epilepsy can be deeply ingrained within the fabric of these communities, leading to fear, discrimination, social isolation and stigmatisation of individuals with epilepsy [11, 13, 14]. Moreover, limited awareness of epilepsy in rural communities, poor healthcare, and lack of resources in rural areas intensifies the challenges faced by people living with epilepsy (PLWE) and it hinders their ability to address and combat stigma [15, 16].

Understanding the impact of stigma on PLWE in rural communities is crucial for developing targeted interventions and support systems. Addressing the underlying factors contributing to stigma, such as cultural beliefs and misconceptions, can promote greater awareness, acceptance, and inclusivity within these communities [17]. Enhancing knowledge about epilepsy, its causes, and its management can help dispel myths and reduce the fear associated with the condition [15, 18].

1.1 Background

This chapter focuses on the influence of stigma on people living with epilepsy in rural areas. Epilepsy is a neurological condition that causes repeated seizures and affects millions worldwide [19, 20, 21]. Despite its frequency and impact on people’s lives, PLWE is commonly stigmatised and discriminated against due to widespread misconceptions and misunderstandings about the disorder. These social barriers can exacerbate the challenges that people with epilepsy face and hinder their ability to participate fully in society.

Stigma is a social phenomenon characterised by negative attitudes, beliefs, and stereotypes, marginalising and excluding individuals with certain health conditions [22, 23, 24, 25]. In the case of epilepsy, stigma arises from a combination of cultural beliefs, superstitions, and a lack of understanding about the nature of the disorder. This stigma is especially prevalent in rural communities, where cultural beliefs and practices considerably influence attitudes about health and illness [5, 26, 27, 28, 29]. In many rural areas, cultural beliefs attribute epilepsy to supernatural causes, such as possession or divine punishment [30, 31, 32, 33]. These beliefs stigmatise people with epilepsy, causing fear, prejudice, and social exclusion [5, 34, 35, 36]. Furthermore, poor access to healthcare, education, and resources in rural regions exacerbates the difficulties faced by people with epilepsy, making it difficult for them to address and battle stigma [5, 34, 37, 38].

This chapter aims to provide an educational analysis of the influence of stigma on people living with epilepsy in rural settings. The chapter highlights the problems individuals with epilepsy confront in obtaining healthcare, jobs, and education in rural locations by evaluating relevant literature and case studies. It also investigates the psychological and social effects of stigma on the well-being of people with epilepsy. The chapter also looks into initiatives for stigma reduction, including community-based education and awareness campaigns, as well as the role of healthcare personnel in increasing epilepsy understanding and acceptance. These efforts aim to reduce stigma, enhance healthcare and support systems access, and encourage inclusion in rural communities. Overall, the academic foundation of this chapter is based on scholarly research on epilepsy, stigma, and the unique obstacles that people with epilepsy encounter in rural settings. The chapter intends to provide a comprehensive overview of the subject by evaluating existing literature and drawing on empirical evidence, emphasising the need for better awareness, assistance, and inclusion for those with epilepsy in rural settings.

1.2 Purpose of the chapter

This chapter aims to shed light on the adverse effects of stigma on people living with epilepsy who live in rural regions and provide a complete understanding of their difficulties. It aims to increase awareness of the unique dynamics of epilepsy-related stigma in rural communities, where cultural attitudes and insufficient access to resources are significant considerations. The chapter emphasises the urgent need to address these concerns by evaluating the influence of stigma on numerous elements of persons’ lives, such as healthcare access, employment, education, and social well-being. The chapter also looks at techniques and interventions that might help eliminate stigma and increase inclusivity, such as community-based education initiatives and the involvement of healthcare providers. The overarching goal is to promote improved awareness, acceptance, and support for those living with epilepsy in rural settings. This ensures that people have equal access to resources and opportunities for leading whole lives free of stigma and discrimination.

Advertisement

2. Stigma and its impact

2.1 Stigma and misconceptions about epilepsy

The stigma surrounding epilepsy arises from misconceptions, stereotypes, and cultural beliefs that contribute to the social marginalisation and discrimination experienced by individuals with the condition [9, 34, 36]. Epilepsy is typically buried in misconceptions and misunderstandings in many communities, particularly rural ones, exacerbating its associated stigma. The belief that epilepsy is communicable is a prevalent misconception. This idea derives from a misunderstanding of the disorder’s neurological origins. People may mistakenly fear that they can contract epilepsy through close contact with individuals with seizures, leading to social distancing and isolation of those with the condition [34, 36, 39]. Such views not only contribute to the stigmatisation of people with epilepsy but also impede their social interactions and integration into their communities.

Another common misconception is that epilepsy is a mental illness or a form of insanity [9, 40, 41, 42]. This perception arises due to seizures’ visible and sometimes unpredictable nature, which can be misinterpreted as signs of insanity. PLWE often face negative labels and are unjustly associated with cognitive impairments or psychological instability. These false assumptions reinforce stigma and affect individuals’ self-esteem and self-perception [34].

Cultural beliefs and superstitions significantly influence the perception of epilepsy in many rural communities [8, 34, 37, 43, 44]. Some cultures attribute seizures to spiritual or supernatural causes, associating them with curses, evil spirits, or divine punishment. This attribution of mystical causes to epilepsy further stigmatises affected individuals, leading to social exclusion, fear, and discrimination [45, 46]. Such cultural beliefs can contribute to people’s unwillingness to seek medical care, instead turning to traditional healers or participating in dangerous acts to eliminate imagined supernatural forces [47, 48, 49].

Challenging these assumptions and cultural ideas is critical to eliminate epilepsy-related stigma. Public education efforts, community discussions, and sharing of culturally relevant information can help debunk myths and improve knowledge of epilepsy as a neurological disorder. It is possible to demystify epilepsy and build a more inclusive and supportive environment for PLWE in rural communities by encouraging an accurate understanding of its causes, triggers, and management.

2.2 Challenges in healthcare access

Access to healthcare services is fundamental to managing epilepsy and mitigating its impact on individuals’ lives. However, in rural communities, people with epilepsy face numerous challenges that hinder their ability to access appropriate healthcare, exacerbating the burden of the condition.

One primary challenge is the limited availability and accessibility of healthcare facilities in rural areas [15, 50, 51]. These communities often suffer from inadequate healthcare infrastructure, including a scarcity of hospitals, clinics, and specialised epilepsy centres [16, 37, 52]. Consequently, individuals affected by epilepsy might be compelled to undertake extensive journeys to access necessary medical care, leading to physical and financial hardships, especially for those with limited means. The stigma surrounding epilepsy adds another layer of complexity to healthcare access. Many individuals with epilepsy in rural communities fear the negative judgements and discrimination they might face when seeking medical care [9, 34]. As a result, individuals may postpone or avoid obtaining treatment entirely, resulting in suboptimal management of their condition and an increased risk of consequences. Similarly, it was revealed that one of the contributing factors to poor health-seeking behaviour for PLWE is due to stigma and fear of being recognised as a person living with epilepsy, which can lead to discrimination and social isolation [50].

Healthcare providers in rural areas may also lack the necessary knowledge and training to diagnose and treat epilepsy effectively. This gap in lacking knowledge related to epilepsy results in misdiagnosis or underdiagnosis of patients, which further delays appropriate care [53]. Moreover, the scarcity of epilepsy specialists and neurologists in rural areas means that individuals may not have access to specialised care or comprehensive treatment plans [54].

Financial constraints pose yet another barrier to healthcare access for individuals with epilepsy in rural communities. Many rural populations face poverty and limited financial resources, making it challenging to afford transportation costs, diagnostic tests, medications, and ongoing medical expenses associated with managing epilepsy [15]. This financial burden can significantly impact their ability to seek and receive adequate healthcare services.

Addressing these challenges requires multifaceted approaches. Improving healthcare infrastructure in rural areas, including the establishment of epilepsy clinics and the deployment of trained healthcare professionals, can enhance access to quality care [55]. Additionally, community-based awareness programmes can educate individuals about epilepsy, dispel myths and misconceptions, and reduce stigma, encouraging affected individuals to seek medical attention without fear of discrimination [56]. The awareness may also be extended by teaching epilepsy from a tender age in schools [18]. Collaborations between healthcare providers, community organisations, and policymakers are vital in implementing these strategies and ensuring that individuals with epilepsy in rural communities receive the care they need.

2.3 Employment and education

The stigma associated with epilepsy in rural communities has significant implications for the employment and educational opportunities available to individuals with the condition [57]. Discrimination and prejudice often create barriers that hinder their ability to secure and maintain employment and access quality education.

In employment, individuals with epilepsy often face discrimination due to misconceptions and unfounded fears about their condition. Employers may harbour concerns about potential safety risks if individuals with epilepsy cannot perform their work-related duties effectively or pose a liability in the workplace [58, 59]. This stigma can result in limited job prospects, lower wages, and a lack of career advancement opportunities for individuals with epilepsy in rural communities [60]. Consequently, affected individuals may experience financial difficulties and dependency on social support systems, further perpetuating the cycle of stigma and exclusion.

Moreover, the fear of revealing their epilepsy diagnosis to employers can lead to secrecy and non-disclosure, as individuals attempt to avoid potential discrimination [34]. This fear stems from the stigma associated with epilepsy and the anticipation of adverse reactions from employers and colleagues. Such concealment may exacerbate workplace stress and anxiety, potentially compromising job performance, and overall well-being.

In the realm of education, individuals with epilepsy in rural communities may encounter obstacles that impede their access to quality education. Stigma and misconceptions about epilepsy can lead to exclusion from educational opportunities or limited support within educational institutions [61]. Teachers, administrators, and peers may lack awareness and understanding of epilepsy, resulting in a lack of appropriate accommodations and support for affected students [8]. Consequently, individuals with epilepsy may experience academic difficulties, reduced educational attainment, and diminished prospects for future employment.

Addressing these challenges requires concerted efforts to promote inclusivity and combat stigma in employment and educational settings. Awareness campaigns and education programmes targeted at employers can help dispel misconceptions about epilepsy, emphasise the abilities and rights of individuals with epilepsy, and foster inclusive workplace environments [62, 63]. Implementing reasonable accommodations, such as flexible work schedules or modifications in job tasks, can support the needs of individuals with epilepsy without compromising workplace safety [63].

In the education sector, promoting epilepsy awareness among educators, students, and parents is crucial. Training programmes can equip educators with the knowledge and skills to provide appropriate support, accommodations, and an inclusive learning environment for students with epilepsy [62]. Additionally, fostering peer education and understanding can help reduce bullying, promote empathy, and create a supportive atmosphere for students with epilepsy.

By addressing employment and educational barriers through proactive measures and promoting inclusive practices, rural communities can ensure that individuals with epilepsy have equal opportunities for employment, career advancement, and educational success.

2.4 Social and psychological well-being

The stigma surrounding epilepsy in rural communities profoundly impacts the social and psychological well-being of individuals living with the condition [34, 64]. Stigmatisation often leads to social exclusion, isolation, and strained relationships, causing significant emotional and psychological distress.

One of the main consequences of epilepsy-related stigma is the sense of isolation experienced by individuals with the condition. Stigma can create barriers to social interactions, as people may fear associating with someone with epilepsy due to misunderstandings and fears about seizures [34, 64]. This social isolation can lead to feelings of loneliness, low self-esteem, and a diminished sense of belonging within their communities.

Stigma also affects personal relationships and may strain familial and friendship ties. Families and friends may experience internalised stigma, where the affected individual and their family members internalise negative beliefs and feelings about epilepsy [34, 65]. This can lead to strained relationships, secrecy, and a lack of open communication about the condition within the family unit. Friends and acquaintances may distance themselves from individuals with epilepsy due to fear, lack of understanding, or discomfort, further contributing to feelings of social exclusion and alienation.

The psychological impact of epilepsy-related stigma can be significant. Individuals with epilepsy often experience heightened anxiety, depression, and diminished self-worth because of the negative societal attitudes they encounter [61]. Fear of public judgement and discrimination can lead to increased stress levels, social anxiety, and avoidance of social situations. This psychological burden can have detrimental effects on overall well-being, quality of life, and the ability to engage in meaningful activities.

In rural communities where access to mental health support may be limited, individuals with epilepsy may face additional challenges in accessing appropriate psychological care [16]. The lack of mental health resources compounds the already existing barriers to social and psychological well-being, further underscoring the need for comprehensive support systems [16].

Community-based support programmes and advocacy initiatives are crucial to address the social and psychological challenges associated with epilepsy-related stigma [62]. Support groups, both in-person and online, can provide individuals with epilepsy with a sense of belonging, opportunities for peer support, and a safe space to share their experiences [66]. These groups can help individuals develop coping strategies, build resilience, and normalise their experiences.

Education and awareness campaigns to challenge stigmatise beliefs and promote understanding within communities are also essential [7, 61]. By increasing knowledge about epilepsy, its causes, and its management, communities can foster empathy, reduce fear, and promote inclusivity [62]. Cultivating an environment that encourages open dialogue, acceptance, and support can help alleviate the social and psychological burdens of individuals with epilepsy in rural communities.

Advertisement

3. Strategies for reducing stigma

Reducing the stigma associated with epilepsy in rural communities requires a multifaceted approach that involves education, awareness, and community engagement. Implementing strategies to combat stigma can foster understanding, empathy, and acceptance, creating more inclusive environments for individuals with epilepsy.

Community-Based Education and Awareness Programmes: Community-based education programmes play a vital role in dispelling myths, challenging misconceptions, and promoting accurate knowledge about epilepsy. These programmes can be conducted through workshops, public forums, and interactive sessions, engaging community members, healthcare providers, educators, and religious leaders [7]. This can also be done by educating learners from the primary level so that when they grow up, they are knowledgeable about the condition, which may decrease stigma related to epilepsy [62]. By addressing cultural beliefs, superstitions, and misunderstandings, these initiatives can help reshape attitudes and reduce the stigma surrounding epilepsy.

Advocacy and Support Groups: Establishing advocacy and support groups specifically focused on epilepsy can provide a platform for individuals with epilepsy, their families, and allies to come together, share experiences, and raise awareness [66]. These groups can engage in advocacy efforts to promote policies that protect the rights of individuals with epilepsy and combat discrimination. They can also serve as sources of emotional support, empowerment, and education, helping individuals navigate the challenges associated with living with epilepsy in rural communities.

Promoting Role Models and Personal Narratives: Highlighting positive stories and personal narratives of individuals with epilepsy can challenge stereotypes and humanise the condition [66]. Sharing stories of resilience, achievements, and successful management of epilepsy can inspire others and contribute to de-stigmatisation efforts. Role models who have excelled in various fields despite living with epilepsy can serve as powerful examples, showcasing the abilities and potential of individuals with epilepsy.

Collaboration with Healthcare Providers: Healthcare providers are crucial in reducing stigma and promoting understanding of epilepsy [67]. Through training programmes and continuous medical education, healthcare professionals can develop the knowledge and skills necessary to provide appropriate care, support, and guidance to individuals with epilepsy [68]. They can also play a vital role in educating the broader community about epilepsy, dispelling myths, and promoting inclusive attitudes.

Promoting Inclusive Policies and Legislation: Governments and policymakers are responsible for enacting and enforcing inclusive policies that protect the rights of individuals with epilepsy and prevent discrimination. These policies can encompass employment protections, anti-stigma campaigns, educational accommodations, and access to healthcare services [62, 69, 70]. By promoting legislation that addresses stigma and discrimination, rural communities can create an environment that fosters inclusivity, equal opportunities, and social integration for individuals with epilepsy.

Evaluation and Continuous Improvement: It is essential to evaluate the effectiveness of stigma reduction strategies and make necessary adjustments based on feedback and outcomes. Regular assessments can help identify gaps, measure the impact of interventions, and refine strategies for maximum effectiveness [71]. By implementing these strategies, rural communities can actively work toward reducing stigma, promoting acceptance, and creating a supportive environment that enables individuals with epilepsy to live fulfilling lives without fear of judgement or exclusion.

Promoting Inclusivity in Rural Communities: Promoting inclusivity in rural communities is essential to create an environment that embraces individuals with epilepsy and ensures their equal participation, rights, and opportunities [72]. By addressing stigma and fostering understanding and acceptance, rural communities can work toward building a supportive and inclusive society for individuals with epilepsy.

Community Education and Sensitisation: Community-wide education and sensitisation initiatives are crucial in promoting inclusivity. These programmes can be designed to raise awareness about epilepsy, challenge misconceptions, and foster empathy and understanding. Workshops, public forums, and information campaigns can engage community members, schools, religious institutions, and local organisations, helping to dispel stigma and build a foundation of knowledge and acceptance [8, 62].

Accessible Healthcare Services: Enhancing access to healthcare services is vital for individuals with epilepsy in rural areas. Establishing epilepsy clinics, mobile health units, and telemedicine services can help bridge the gap in healthcare access. Collaborations between healthcare providers, community organisations, and government agencies can ensure that quality epilepsy care is available and affordable. Providing specialised training for healthcare professionals in rural areas can also improve diagnosis, treatment, and support for individuals with epilepsy [73].

Inclusive Policies and Legislation: Rural communities should adopt inclusive policies and legislation that protect the rights and promote the well-being of individuals with epilepsy [74]. These policies include employment protections, educational accommodations, accessibility requirements, and anti-discrimination measures. By aligning with national and international standards, rural communities can ensure that individuals with epilepsy have equal opportunities, fair treatment, and legal safeguards against discrimination.

Support Networks and Peer Mentoring: Establishing support networks and peer mentoring programmes can provide crucial emotional support, guidance, and a sense of belonging to individuals with epilepsy [66]. These networks can be created through local organisations, support groups, or online platforms. Peer mentors who have personal experiences with epilepsy can offer practical advice, encouragement, and understanding, helping individuals navigate the challenges associated with living with epilepsy in rural communities.

Education and Empowerment: Educational institutions play a pivotal role in promoting inclusivity. Schools should provide a safe and supportive environment for students with epilepsy, ensuring that they receive appropriate accommodations and support services. Teachers and school staff can undergo training to enhance their understanding of epilepsy and develop strategies to create an inclusive learning environment. Empowering individuals with epilepsy through education and skills training can enhance their self-esteem, independence, and economic opportunities [8, 18, 62].

Collaborative Partnerships: Promoting inclusivity requires collaboration among various stakeholders, including healthcare providers, educators, community leaders, and individuals with epilepsy and their families. By working together, these stakeholders can share resources, expertise, and ideas to develop comprehensive strategies for inclusivity [62, 69]. Collaborative partnerships can also facilitate the coordination of services, advocacy efforts, and the implementation of initiatives that address the unique needs and challenges faced by individuals with epilepsy in rural communities.

By implementing these strategies, rural communities can promote inclusivity and create an environment where individuals with epilepsy feel valued, supported, and included. By reducing stigma, increasing awareness, and providing necessary resources and support systems, rural communities can empower individuals with epilepsy to lead fulfilling lives and contribute to their communities.

Advertisement

4. Conclusion and future directions

The impact of stigma on individuals living with epilepsy in rural communities is significant and multifaceted. Stigmatisation arises from misconceptions, cultural beliefs, and a lack of understanding about epilepsy. This stigma creates barriers to healthcare access, employment, education, and social inclusion, adversely affecting the social and psychological well-being of individuals with epilepsy. To address these challenges, various strategies can be implemented. Community-based education and awareness programmes can dispel myths, challenge misconceptions, and foster empathy and acceptance. Advocacy and support groups can provide a platform for individuals with epilepsy to share experiences and promote their rights. Collaboration with healthcare providers, inclusive policies and legislation, and promoting support networks and peer mentoring further reduce stigma and promote inclusivity.

Looking to the future, it is essential to continue advancing efforts to combat epilepsy-related stigma in rural communities. This includes ongoing research to understand the cultural and social dynamics contributing to stigma in different contexts. Additionally, evaluating the effectiveness of stigma reduction strategies and refining approaches based on feedback and outcomes is crucial for continuous improvement.

Education and awareness should remain central in future initiatives, targeting the general public and healthcare professionals, educators, and policymakers. By integrating epilepsy education into school curricula, healthcare training programmes, and community outreach initiatives, accurate knowledge about epilepsy can be disseminated more widely, contributing to a more informed and accepting society. Moreover, the development of accessible and affordable healthcare services specifically tailored to the needs of rural communities is essential. This includes increasing the availability of epilepsy clinics, improving access to specialised care, and expanding telemedicine services to reach individuals in remote areas. Additionally, fostering collaboration between healthcare providers, community organisations, and government agencies can strengthen the support network available to individuals with epilepsy.

It is also essential to prioritise empowering individuals with epilepsy through education, skills training, and economic opportunities. By equipping them with the tools and resources necessary for self-advocacy and independence, individuals with epilepsy can actively contribute to their communities and challenge the barriers imposed by stigma. Through efforts to address stigma, promote inclusivity, and provide comprehensive support systems, rural communities can ensure that individuals with epilepsy have equal opportunities, access to healthcare, and a supportive environment that enables them to lead fulfilling lives. Through continued efforts, research, and collaboration, we can strive for a future where epilepsy-related stigma is minimised, and individuals with epilepsy are embraced as valued members of their communities.

Advertisement

5. Summary of the chapter

This chapter focused on the complex stigma surrounding epilepsy in rural communities and its far-reaching effects on various aspects of life. The main goal is to shed light on the harmful consequences of this stigma on people living with epilepsy (PLWE) and to raise awareness about the intricate dynamics of epilepsy-related stigma in rural areas. Stigma arises from misunderstandings, stereotypes, and cultural beliefs, leading to the social marginalisation of PLWE. Misconceptions include the false notion that epilepsy is contagious or a sign of insanity. Cultural superstitions link it to curses or divine punishment, further fuelling the stigma. Such misconceptions hinder social integration and can even affect a person’s willingness to seek medical care for their condition. In rural communities, accessing proper healthcare infrastructure is already challenging, and stigma adds another layer of complexity. The absence of epilepsy specialists, financial constraints, and fears of discrimination can delay or prevent treatment, resulting in poor management of the condition. To address this, the solutions proposed involve improving healthcare infrastructure, conducting awareness programmes, and promoting collaboration between healthcare providers and community organisations.

The impact of stigma is also evident in employment and education. Discrimination in the workplace due to misconceptions about epilepsy can limit job prospects and career advancement. In the educational sphere, stigma leads to exclusion or inadequate support, which affects academic success. The suggested remedies include education programmes for employers and teachers and implementing reasonable accommodations to support PLWE. Epilepsy-related stigma profoundly affects individuals’ social and psychological well-being, leading to isolation, strained familial ties, anxiety, depression, and diminished self-worth. The chapter advocates for community-based support programmes and education campaigns to foster empathy and inclusivity, thus easing the burdens PLWE face in rural areas.

The chapter further provided strategies for reducing the stigma associated with epilepsy in rural communities, including community-based education and awareness programmes to dispel myths, advocacy and support groups, promoting positive role models and personal narratives, collaboration with healthcare providers, promoting inclusive policies and legislation, and continuous evaluation and improvement of interventions. To promote inclusivity in rural communities, initiatives involve community education and sensitisation, accessible healthcare services, inclusive policies and legislation, support networks and peer mentoring, education and empowerment, and collaborative partnerships. By implementing these strategies, rural communities can create a supportive and inclusive environment that empowers individuals with epilepsy to lead fulfilling lives without fear of judgement or exclusion.

Advertisement

Conflict of interest

The authors declare no conflict of interest.

References

  1. 1. van Veelen R, Veldman J, Van Laar C, Derks B. Distancing from a stigmatized social identity: State of the art and future research agenda on self-group distancing. European Journal of Social Psychology. 2020;50(6):1089-1107
  2. 2. Imran N, Afzal H, Aamer I, Hashmi A, Shabbir B, Asif A, et al. Scarlett letter: A study based on experience of stigma by COVID-19 patients in quarantine. Pakistan Journal of Medical Sciences. 2020;36(7):1471
  3. 3. Arias-Colmenero T, Pérez-Morente MÁ, Ramos-Morcillo AJ, Capilla-Díaz C, Ruzafa-Martínez M, Hueso-Montoro C. Experiences and attitudes of people with HIV/AIDS: A systematic review of qualitative studies. International Journal of Environmental Research and Public Health. 2020;17(2):639
  4. 4. Aubé B, Follenfant A, Goudeau S, Derguy C. Public stigma of autism spectrum disorder at school: Implicit attitudes matter. Journal of Autism and Developmental Disorders. 2021;51:1584-1597
  5. 5. Kwon CS, Jacoby A, Ali A, Austin J, Birbeck GL, Braga P, et al. Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy—Report from the international league against epilepsy task force on stigma in epilepsy. Epilepsia. 2022;63(3):573-597
  6. 6. Thijs RD, Surges R, O’Brien TJ, Sander JW. Epilepsy in adults. Lancet. 2019;393:689-701
  7. 7. Musekwa OP, Makhado L, Maphula A, Mabunda JT. How much do we know? Assessing public knowledge, awareness, impact, and awareness guidelines for epilepsy: A systematic review. The Open Public Health Journal. 2020;13(1)
  8. 8. Makhado TG, Lebese RT, Maputle MS, Makhado L. Epilepsy life skill education guidelines for primary school teachers and learners in Limpopo and Mpumalanga provinces, South Africa: Multiphase mixed methods protocol. PLoS One. 2022;17(7):e0271805
  9. 9. Braga P, Hosny H, Kakooza-Mwesige A, Rider F, Tripathi M, Guekht A. How to understand and address the cultural aspects and consequences of diagnosis of epilepsy, including stigma. Epileptic Disorders. 2020;22(5):531-547
  10. 10. Anene-Okeke CG, Anosike C, Aluh DO, Odo LE. Secondary school students' knowledge, attitude, and practices towards epilepsy in Nsukka City, Enugu State. Epilepsy & Behavior. 2020;112:107441
  11. 11. Mbuba CK, Ngugi AK, Newton CR, Carter JA. The epilepsy treatment gap in developing countries: A systematic review of the magnitude, causes, and intervention strategies. Epilepsia. 2008;49(9):1491-1503
  12. 12. Herrmann LK, Welter E, Berg AT, Perzynski AT, Van Doren JR, Sajatovic M. Epilepsy misconceptions and stigma reduction: Current status in Western countries. Epilepsy & Behavior. 2016;60:165-173
  13. 13. Kaddumukasa M, Kaddumukasa MN, Buwembo W, Munabi IG, Blixen C, Lhatoo S, et al. Epilepsy misconceptions and stigma reduction interventions in sub-Saharan Africa, a systematic review. Epilepsy & Behavior. 2018;85:21-27
  14. 14. Makasi CE, Kilale AM, Ngowi BJ, Lema Y, Katiti V, Mahande MJ, et al. Knowledge and misconceptions about epilepsy among people with epilepsy and their caregivers attending mental health clinics: A qualitative study in Taenia solium endemic pig-keeping communities in Tanzania. Epilepsia Open. 2023;8(2):487-496
  15. 15. Kaddumukasa M, Nalubwama H, Kaddumukasa MN, Lhatoo S, Sewankambo N, Katabira E, et al. Barriers to epilepsy care in Central Uganda, a qualitative interview and focus group study involving PLWE and their caregivers. BMC Neurology. 2019;19(1):1-10
  16. 16. Lavin B, Dormond C, Scantlebury MH, Frouin PY, Brodie MJ. Bridging the healthcare gap: Building the case for epilepsy virtual clinics in the current healthcare environment. Epilepsy & Behavior. 2020;111:107262
  17. 17. Price P, Kobau R, Buelow J, Austin J, Lowenberg K. Improving understanding, promoting social inclusion, and fostering empowerment related to epilepsy: Epilepsy Foundation public awareness campaigns—2001 through 2013. Epilepsy & Behavior. 2015;44:239-244
  18. 18. Makhado TG, Lebese RT, Maputle MS. Incorporation of epilepsy into life skills education: Perceptions of primary school learners in Mpumalanga and Limpopo Province—A qualitative exploratory study. Children. 2023;10(3):569
  19. 19. Vetri L, Roccella M, Parisi L, Smirni D, Costanza C, Carotenuto M, et al. Epilepsy: A multifaced Spectrum disorder. Behavioral Sciences. 2023;13(2):97
  20. 20. Rohira V, Chaudhary S, Das S, Prasad MK. Automatic epilepsy detection from EEG signals. In: Proceedings of the 6th Joint International Conference on Data Science & Management of Data (10th ACM IKDD CODS and 28th COMAD). 2023. pp. 272-273
  21. 21. Liu J, Zhang P, Zou Q , Liang J, Chen Y, Cai Y, et al. Status of epilepsy in the tropics: An overlooked perspective. Epilepsia Open. 2023;8(1):32-45
  22. 22. Baierl-Kwok C, Rostosky SS. When worlds collide: The romantic relationship experiences of bisexual-identifying Asian American men. Personal Relationships. 2023. DOI: 10.1111/pere.12496
  23. 23. Granjon M, Odile R, Popa-Roch M, Aubé B, Sanrey C. Breaking the Mold: Disability Stereotyping Is Shaped by Stigma Characteristics. PsyArXiv. 2023. Available from: https://osf.io/43yjc/?view_only=66665a8c73c446e099756ee5cf4fda24
  24. 24. Murvartian L, Saavedra-Macías FJ, de la Mata ML. Public stigmatization of women victims of intimate partner violence by professionals working in the judicial system and law enforcement agencies in Spain. Journal of Interpersonal Violence. 2023;38(18-19):08862605231176798
  25. 25. Westbury S, Oyebode O, Van Rens T, Barber TM. Obesity stigma: Causes, consequences, and potential solutions. Current Obesity Reports. 2023;12(1):10-23
  26. 26. Kakooza-Mwesige A, Kaddumukasa M, Koltai DC, Kaddumukasa MN, Nakasujja N, Kajumba M, et al. Leveraging the lessons learned from studies on the cultural context of epilepsy care in Uganda: Opportunities and future directions. Epilepsy & Behavior. 2021;114:107302
  27. 27. Koltai DC, Smith CE, Cai GY, Ratliff O, Kakooza-Mwesige A, Najjuma JN, et al. Healthcare provider perspectives regarding epilepsy care in Uganda. Epilepsy & Behavior. 2021;114:107294
  28. 28. Thapa S, Aro AR. ‘Menstruation means impurity’: Multilevel interventions are needed to break the menstrual taboo in Nepal. BMC Women's Health. 2021;21(1):1-5
  29. 29. Subu MA, Wati DF, Netrida N, Priscilla V, Dias JM, Abraham MS, et al. Types of stigma experienced by patients with mental illness and mental health nurses in Indonesia: A qualitative content analysis. International Journal of Mental Health Systems. 2021;15:1-2
  30. 30. Antimov P, Tournev I, Zhelyazkova S, Sander JW. Traditional practices and perceptions of epilepsy among people in Roma communities in Bulgaria. Epilepsy & Behavior. 2020;108:107086
  31. 31. Smith CE, Kajumba M, Bobholz S, Smith PJ, Kaddumukasa M, Kakooza-Mwesige A, et al. Pluralistic and singular causal attributions for epilepsy in Uganda. Epilepsy & Behavior. 2021;114:107334
  32. 32. Bone I, Dein S. Religion, spirituality, and epilepsy. Epilepsy & Behavior. 2021;122:108219
  33. 33. Tayeb HO. Epilepsy stigma in Saudi Arabia: The roles of mind–body dualism, supernatural beliefs, and religiosity. Epilepsy & Behavior. 2019;95:175-180
  34. 34. Mayor R, Gunn S, Reuber M, Simpson J. Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence. Seizure. 2022;94:142-160
  35. 35. Dayapoglu N, Ayyıldız Nİ, Şeker D. Fear of negative evaluation and the concealment of their disease by epilepsy patients. Epilepsy & Behavior. 2020;113:107539
  36. 36. Ali Arazeem A, Tahirah Adedolapo I, Joseph AO. Shame, stigma, and social exclusion: The lived experiences of epileptic patients in a health facility in Ilorin, Nigeria. Global Public Health. 2022;17(12):3839-3852
  37. 37. Kissani N, Lengané YT, Patterson V, Mesraoua B, Dawn E, Ozkara C, et al. Telemedicine in epilepsy: How can we improve care, teaching, and awareness? Epilepsy & Behavior. 2020;103:106854
  38. 38. Gosain K, Samanta T. Understanding the role of stigma and misconceptions in the experience of epilepsy in India: Findings from a mixed-methods study. Frontiers in Sociology. 13 May 2022;7:790145
  39. 39. Mula M, Kaufman KR. Double stigma in mental health: Epilepsy and mental illness. BJPsych Open. 2020;6(4):e72
  40. 40. Abukanna AM, Alenazi MS, Alenazi NS, Alenezi MM, Alanazi IA. Knowledge, attitude and practices of Saudi population in Arar regarding epilepsy and seizures. Medical Science. 2021;25(116):2718-2727
  41. 41. Hakami T, Mahfouz M, Najmi H, Adawi A, Hakami R, Areeshi N, et al. Knowledge of and attitude towards epilepsy among university students in Arabia: Misconceptions of the next generation. Epilepsy & Behavior Reports. 2021;16:100450
  42. 42. Alsohibani A, Alkheder R, Alharbi M, Alrasheedi M, Alsoghair M, Alsuhaibani M. Public awareness, knowledge, and attitudes regarding epilepsy in the Qassim region, Saudi Arabia. Epilepsy & Behavior. 2019;92:260-264
  43. 43. Chabangu Q , Maputle MS, Lebese RT, Makhado L. Indigenous practices for management of epilepsy by traditional healers in South Africa. Epilepsy and Paroxysmal Conditions. 2022;14(3):267-275
  44. 44. Mbelesso P, Luna J, Yangatimbi E, Mboukou C, Preux PM. Sociocultural representations of epilepsy in the Central African Republic: A door-to-door survey. Seizure. 2019;67:23-26
  45. 45. Ruesch N. The Stigma of Mental Illness-E-Book: Strategies against Discrimination and Social Exclusion. Chicago, USA: Elsevier Health Sciences; 2022
  46. 46. Koschorke M, Al-Haboubi YH, Tseng PC, Semrau M, Eaton J. Mental health, stigma, and neglected tropical diseases: A review and systematic mapping of the evidence. Frontiers in Tropical Diseases. 2022;3:93
  47. 47. Shange S, Ross E. “The question is not how but why things happen”: South African traditional healers’ explanatory model of mental illness, its diagnosis and treatment. Journal of Cross-Cultural Psychology. 2022;53(5):503-521
  48. 48. Kasa GA, Kaba M. Preferences for health care and its determinants among mentally ill patients of the west Shoa zone community, Oromia, Ethiopia. Patient Preference and Adherence. 2023;17:557-570
  49. 49. Bademosi F. Cultural and Religious/Spiritual Beliefs and People of African Descent’s Attitudes towards Seeking Mental Health Treatment (Doctoral Dissertation, the Chicago School of Professional Psychology). ProQuest LLC. 2020 this is the dessertation from The Chicago School of Professional Psychologys
  50. 50. Molla A, Mekuriaw B, Habtamu E, Mareg M. Treatment-seeking behavior towards epilepsy among rural residents in Ethiopia: A cross-sectional study. Neuropsychiatric Disease and Treatment. 2020;16:433-439
  51. 51. Owens S, Sirven JI, Shafer PO, Fishman J, Wild I, Findley M, et al. Innovative approaches reaching underserved and rural communities to improve epilepsy care: A review of the methodology of the connectors project. Epilepsy & Behavior. 2019;90:273-283
  52. 52. Kissani N, Cherkaoui Rhazouani O, Souirti Z, Khramaz M, Meryem C, Mebrouk Y, et al. Epilepsy in Morocco: Realities, pitfalls and prospects. Epilepsia Open. 2021;6(1):13-21
  53. 53. Mustafa MN, Wedaa Alla LG, Ahmad TK. Knowledge and attitude toward epilepsy among the final and semi-final years medical students at University of Bahri. Sudan. Epilepsia Open. 2022;7(1):144-150
  54. 54. Chin JH. Epilepsy treatment in sub-Saharan Africa: Closing the gap. African Health Sciences. 2012;12(2):186-192
  55. 55. Caraballo R, Fejerman N. Management of epilepsy in resource-limited settings. Epileptic Disorders. 2015;17(1):13-18
  56. 56. Giuliano L, Cicero CE, Padilla S, Mayaregua DR, Villarreal WM, Sofia V, et al. Knowledge, stigma, and quality of life in epilepsy: Results before and after a community-based epilepsy awareness program in rural Bolivia. Epilepsy & Behavior. 2019;92:90-97
  57. 57. Boling W, Means M, Fletcher A. Quality of life and stigma in epilepsy, perspectives from selected regions of Asia and sub-Saharan Africa. Brain Sciences. 2018;8(4):59
  58. 58. Day E. Time to end the stigma of epilepsy. Lancet Neurology. 2022;21:671
  59. 59. Morrison J. ‘Left behind’North of the border? Economic disadvantage and intersectional inequalities in post-pandemic Scotland. Scottish Affairs. Scotland. 2022;31(4):393-418
  60. 60. Kuramochi I, Iwayama T, Brandt C, Yoshimasu H, Bien CG, Hagemann A. Assessment of self-stigma in epilepsy: Validation of the German version epilepsy self-stigma scale (ESSS-G). Epilepsia Open. 2023;8(2):946-958
  61. 61. Makhado L, Maphula A, Makhado TG, Musekwa OP. Perspective chapter: Practical approaches to enhance successful lives among people living with epilepsy. Health and Educational Success-Recent Perspectives. 2022. DOI: 10.5772/intechopen.106649
  62. 62. Makhado TG, Lebese RT, Maputle MS. Development and validation of epilepsy life skills guidelines for primary school learners and teachers in Limpopo and Mpumalanga provinces. Children. 2023;10(7):1194
  63. 63. Fisher K, Desroches ML, Marsden D, Rees S, Northway R, Horan P, et al. International nursing actions to reduce health inequities faced by people with intellectual and developmental disability. Online Journal of Issues in Nursing. 2022;27(3). DOI: 10.3912/OJIN.Vol27No03Man07
  64. 64. Alabi OT, Musbau LA, Wojujutari AK, Abiola SS, Chioma OC. Relationship between psychological distress and perceived stigma on mental well-being in people with epilepsy: Self-compassion as a moderator. Arab Journal of Psychiatry. 2023;34(1):56-63
  65. 65. Coleman H, Peterson CL, Walker C. Understanding the experiences of stigma in relation to social support among an Australian community cohort of people living with epilepsy. Australian Journal of Social Issues. 2022;57(4):920-937
  66. 66. Evett D, Hutchinson K, Bierbaum M, Perikic N, Proctor C, Rapport F, et al. Peer support and social network groups among people living with epilepsy: A scoping review. Epilepsy & Behavior. 2021;124:108381
  67. 67. Shawahna R. Agreement of Palestinian nursing students with recommendations to eliminate epilepsy stigma and change perception of the general public about epilepsy: A cross-sectional study. Epilepsy & Behavior. 2020;109:107126
  68. 68. Giuliano L, Cicero CE, Padilla S, Camargo M, Sofia V, Zappia M, et al. Knowledge and attitudes towards epilepsy among nonmedical health workers in rural Bolivia: Results after a long-term activity in the Chaco region. Epilepsy & Behavior. 2018;85:58-63
  69. 69. Mariga L, McConkey R. Inclusive Education in Low-Income Countries: A Resource Book for Teacher Educators, Parent Trainers and Community Development. African Books Collective; 2014
  70. 70. Kirsh B, Krupa T, Luong D. How do supervisors perceive and manage employee mental health issues in their workplaces? Work. 2018;59(4):547-555
  71. 71. Heijnders M, Van Der Meij S. The fight against stigma: An overview of stigma-reduction strategies and interventions. Psychology, Health & Medicine. 2006;11(3):353-363
  72. 72. Lorenzo T, van Pletzen E, Booyens M. Determining the competences of community based workers for disability-inclusive development in rural areas of South Africa, Botswana and Malawi. Rural and Remote Health. 2015;15(2):62-75
  73. 73. World Health Organization. CureAll Framework: WHO Global Initiative for Childhood Cancer: Increasing Access, Advancing Quality, Saving Lives. World Health Organization. 2021. Licence: CC BY-NC-SA 3.0 IGO. Available from: https://creativecommons.org/licenses/by-nc-sa/3.0/igo/
  74. 74. Mpofu J, Sefotho MM, Maree JG. Psychological well-being of adolescents with physical disabilities in Zimbabwean inclusive community settings: An exploratory study. African Journal of Disability. 2017;6:1-7

Written By

Thendo Gertie Makhado and Lufuno Makhado

Submitted: 31 July 2023 Reviewed: 10 August 2023 Published: 12 October 2023