Do expressed emotions result in stigma? A potentially modifiable factor in persons with epilepsy in India
Introduction
Seizures, despite being relatively brief in time, leave a dramatic impact not only on the quality of life of those who are living with them but also on those who witness them [1], [2], [3]. Except during the seizure episode, most persons with epilepsy (PWEs) are successfully able to perform their activities of daily living, achieve professional or personal goals, and manage relationship responsibilities well. Yet, such competence is overshadowed by idiosyncratic perceptions and misconceptions of those around a PWE, resulting in a narrowed mind-set, which usually rejects the PWE.
This mind-set is further reflected in the interactions between society, caregivers, and PWEs in the form of expressed emotion (EE). According to Brown [4], [5], EE is the critical, hostile, and emotionally overinvolved remark or attitude that relatives have towards a family member with a disorder or impairment [6], [7]. Studies in various parts of the world have demonstrated a consistent role of critical, hostile, and emotionally overinvolved attitude in relapse of psychiatric or medical conditions [7], [8], [9], [10], [11], [12]. Bessi et al. [13] highlighted the impact of components of the families' emotional climate on the clinical course and psychological adjustment of PWEs. Not only the patients but also the caregivers themselves face significant difficulties in accepting the disorder [14], [15]. They undergo distress due to the illness, intrusive thoughts such as “how will the society react to the person with epilepsy” and “will they accept him/her in a similar manner as a healthy person”, and so on [16], [78]. This proves to be a potential breeding ground for stigma. The unpredictable nature of seizures induces fear of occurrence of such attacks in public [17]. They may ask a PWE to limit their social activities [16], or they themselves will conceal the illness [18], which in turn leaves the PWE feeling socially inferior or guilty [18]. Resultant psychological comorbidities such as depression and anxiety, [19] or escape via social withdrawal occur. A vicious cycle is, therefore, created around the PWE's life. It is so engulfing that it becomes hard for the PWE to live normally and enjoy a good quality of life and, most importantly, may increase the disease burden by acting as a hindrance in epilepsy care, thereby preventing optimal benefits from treatment and counseling [20], [21], [22], [23].
One of the greatest challenges faced by PWEs is reported to be stigma [24]. On the basis of the hidden distress model of stigma in epilepsy [24], Scambler and Hopkins [25], [26] proposed two forms of stigma for PWEs: enacted stigma (external stigma or discrimination), which refers to the experience of unfair treatment by others [27], and felt stigma (perceived stigma or self-stigmatization), which refers to the shame associated with having epilepsy and fear of anticipated discrimination [27], [28]. Several investigators, across the globe, have tried to understand the true picture of distress, which may be more difficult to overcome than the seizures themselves [20], [29]. “Out of the Shadows” is a campaign by the International League against Epilepsy, the International Bureau for Epilepsy, and the World Health Organization (WHO), which has beautifully highlighted the problems caused by stigma associated with epilepsy [30]. Not only does it manifest in psychosocial form, affecting social integration, personal and professional developments, relationships, etc., it also affects treatment-seeking behavior to a large extent [20], [79]. Furthermore, the physical manifestation associated with seizures may scare people having poor knowledge about seizures, who in turn prefer to avoid a PWE, thereby contributing to social stigma [31], [76]. Reno et al. [32] conducted an experiment in a Spanish secondary school, in which they hired an actor to act out a character who has tonic–clonic seizures. Group I of children received information on how to deal with the seizure after they viewed it, and the other did not receive any such instructions. Six months later, Group I portrayed few stigmatizing attitudes when completing the ‘Stigma in Epilepsy’ scale compared with Group II who viewed the seizure alongside derogatory comments about the person and had a much more negative and stigmatizing view of epilepsy at the follow-up. This demonstrates how negatively expressed emotions towards epilepsy can influence others' perceptions of the condition [33]. Negative misconceptions of epilepsy and seizures prior to diagnosis have also been identified as contributory to perceived stigma [22].
Variations in treatment strategies and perception of stigma have been found among developed and developing countries [34]. A multivariate analysis in Europe identified significant contributors to stigma, including age at onset, country and region of origin, feelings about life, and injuries associated with epilepsy [35]; it was also found that, overall, more than half of the European population with epilepsy did not feel stigmatized as opposed to only 17% reporting stigma. A country-wise analysis reflected that PWEs living in the Netherlands (27%) and Spain (31%) felt less stigmatized compared with those living in Poland (56%) and France (62%) [35]. Many East and South Asian countries and regions, such as South Korea [36], Iran, Hong Kong [37], and India, as well as Arabian countries, compared with Pakistan [38], [39], China, and Vietnam, were also found to have high stigma levels. The most affected PWEs, however, were found in sub-Saharan Africa (SSA), [40]. People without epilepsy in SSA were shown to believe that epilepsy is contagious, and this fear, hence, extended beyond the individual to family members and other close associates [41], [42], [43], [44], [45]. Lack of employment and educational opportunities, risk of abandonment by spouse/family, and increased vulnerability to rape and physical abuse left them feeling socioeconomically disadvantaged [46]. Some aspects of stigma are culturally specific, and some are observed to be pervasive [47]. Studies in resource-poor countries [48], [49], [50], [51], [52], including Zambia [46], suggest a greater burden of epilepsy-associated stigma in developing countries versus developed countries [46], [53] Epilepsy was, however, believed to be contagious in both developing [54], [55] as well as developed [56] countries. People in rural Sri Lanka, India, Pakistan, Indonesia, and Africa were demonstrated to believe that seizures are a result of sin or possession by spirits which, thus, influenced their conceptions of the disease and its causes and treatments [57], [58], [59], [60], [77]. The majority of them, as a result, have relied on traditional medicines including Ayurveda in India, Kampo medicines in Japan, herbal medications in China, and traditional herbs in Africa, along with the allopathic medicines for the treatment of epilepsy and other medical disorders in many societies around the world [34], [61]. Based on articles from Asia, Europe, and the United States, seizure frequency has been reported to be the most consistent predictor of stigma [62], [63], [64], [65].
A frequently reported comorbidity, compared with other chronic nonneurological illnesses, of epilepsy is depression [3], [26], [66], [67], [68]. The prevalence of depressive disorders is reported to be more than 30% in community-based samples with epilepsy [24] and 20–55% in patients in epilepsy specialty clinics [25], [26], [30]. Depression can be self-reinforcing, and its associated sequelae, such as poor sense of mastery, loss of confidence, reduced self-esteem due to parental overprotection, rejection, educational and occupational underachievement, or perceived stigma/discrimination, can be even more disabling and long-lasting than the depression itself [4].
Various studies have highlighted that emotions play a pivotal role in health and well-being as emotional status and self-concept are key resources in patients' adaptation to their present situation [5]. These variables, however, have not been studied previously in an Indian population; therefore, the lack of awareness about the possible influence of expressed emotions on perception of stigma and depression impeded progress in reducing stigma in the Indian society.
In this study, we hypothesized that the families' or friends' EEs have a significant influence on perception of depression and stigma by PWEs and attempted to understand the correlation between them.
Section snippets
Methodology
At All India Institute of Medical Sciences (AIIMS), New Delhi, a tertiary care center with cost-free services, 110 consecutive PWEs, visiting the department of neurology, unit III were shortlisted using a non-probability sampling technique and screened. Of the 110 consecutive PWEs, 80 patients met the inclusion criteria and provided written informed consent and were recruited. In line with previous studies, all the recruited patients, both males and females, belonging to the age range of 18–65,
Results
Of the 80 PWEs, the majority were either 30–39 years old (37%) or 18–29 years old (27.5%). Slightly more males (51.25%), compared with females (48.75%), were present in this study. A majority of participating patients (66.3%) were educated above the 12th standard and had an urban background (83.75%). Also, the majority had a good support system (46.25%). The demographic profile is summarized in Table 1. Other than depression, obesity was another prevalent comorbidity that was observed in the
Discussion
Analysis of the profiles of both groups in the present study suggests that families' perception of the illness did seem to influence patients' perception of their illness to a considerable extent. In line with previous research [13], [14], the current results highlight that patients belonging to families exhibiting positive, empathetic, and understanding emotions towards their illness were found to be better adjusted to the disorder compared with those having families with negative, critical,
Conclusion and future directions
In the present study, patients with relatives exhibiting low EEs mostly reported having a good support system, low or no depression, as well as low levels of stigma. On the contrary, patients with relatives exhibiting high EEs had high levels of depression and stigma along with a poor support system. With awareness of these relationships, we should focus our attention towards these underappreciated aspects, which might go unnoticed but do, in this cross-sectional study, appear to potentially
Acknowledgment
This study was supported by the Centre of Excellence for Epilepsy (Department of Biotechnology and Ministry of Science and Technology) (BT/01/COE/09/08).
Disclosure
None of the authors has any conflict of interest to disclose.
References (79)
- et al.
Determinants of quality of life in epilepsy
Epilepsy Behav
(2004) - et al.
Preventing depression in adolescents with epilepsy
Epilepsy Behav
(2006) - et al.
Review of expressed emotions research in health care
Clin Psychol Rev
(2000) - et al.
Epilepsy and family expressed emotions: result of a prospective study
Epilepsy Behav
(2007) - et al.
Inverse relationship between stigma and quality of life in India: is epilepsy a disabling neurological condition?
Epilepsy Behav
(2014) - et al.
Stigma and safe havens: a medical sociological perspective on African-American female epilepsy patients
Epilepsy Behav
(2005) - et al.
Generating a model of epileptic stigma: the role of qualitative analysis
Soc Sci Med
(1990) Stigma and disease: changing paradigms
Lancet
(1998)- et al.
Generating a model of epileptic stigma: the role of qualitative analysis
Soc Sci Med
(1990) - et al.
Treatments and perceptions of epilepsy in Kashmir and the United States: a cross-cultural analysis
Epilepsy Behav
(2004)
Factors contributing to the stigma of epilepsy
Seizure
Epilepsy: public knowledge and attitude in a slum area of Karachi, Pakistan
Seizure
Epilepsy-associated stigma in sub-Saharan Africa: the social landscape of a disease
Epilepsy Behav
The social and economic impact of epilepsy in Zambia: a cross-sectional study
Lancet Neurol
Epilepsy in Laos: knowledge, attitudes, and practices in the community
Epilepsy Behav
The social course of epilepsy: chronic illness as social experience in interior China
Soc Sci Med
Stigma and epilepsy
Epilepsy Behav
Knowledge, attitude, and practice of epilepsy in rural Sri Lanka
Seizure
Attitudes of rural people in central Ethiopia towards epilepsy
Soc Sci Med
Stigma and health-related quality of life in Asian adults with epilepsy
Epilepsy Res
Meanings of epilepsy in its sociocultural context and implications for stigma: findings from ethnographic studies in local communities in China and Vietnam
Epilepsy Behav
People with epilepsy: what do they know and understand, and how does this contribute to their perceived level of stigma?
Epilepsy Behav
Psychosocial factors associated with stigma in adults with epilepsy
Epilepsy Behav
Depression in epilepsy: a frequently neglected multifaceted disorder
Epilepsy Behav
Emotional and affective disturbances in patients with epilepsy
Epilepsy Behav
Validation of the Patient Health Questionnaire-9 (PHQ-9) for depression screening in adults with epilepsy
Epilepsy Behav
The impact of chronic epilepsy on the family
Seizure
Epilepsy stigma perception in an urban area of a limited-resource country
Epilepsy Behav
A review of expressed emotion research in health care
Clin Psychol Rev
The relative impact of anxiety, depression & clinical seizure features on health-related quality of life in epilepsy
Epilepsia
Risk factors for depression in patients with epilepsy
Epilepsy Behav
Daily life in epilepsy: patients' experiences described by emotions
Epilepsy Behav
Influence of family life on the course of schizophrenia
Soc Med
Expressed emotions and psychiatric relapse: a meta-analysis
Arch Gen Psychiatry
Expressed emotions and the course of late-life depression
J Abnorm Psychol
The adverse effect of negative comments about weight and shape from family and siblings on women at high risk for eating disorders
Pediatrics
Influence of expressed emotions and perceived criticism on cognitive behavioural therapy for social phobia
Behav Res Ther
Expressed emotions and glucose control in insulin-dependent diabetes mellitus
Am J Psychiatry
Expressed emotions in the relatives of people with epileptic or non-epileptic seizures
Epilepsia
Cited by (9)
Depression in persons with epilepsy: A comparative study of different tools in Indian population
2021, Epilepsy and BehaviorCitation Excerpt :Thus, in a recent study, using MINI, forty-eight PWE (22.5%) had depression, and 20 PWE (9%) had a moderate or high risk of suicide [13]. In Indian population, using different tools the prevalence of depression in PWE has been reported to range from 33% to 88% [14–17]. In PWE in rural West China, a study using NDDI-E reported depression at 52.6% [18].
An evaluation of the psychosocial impact of epilepsy on marriage in the United Kingdom
2019, Epilepsy and BehaviorCitation Excerpt :The institution of marriage, in the sense that it is the formal recognition of a close (physical and psychological) long-term bond, might be expected to act as a protective factor against perceived stigma. However, prior studies have shown that family relations can also have a destabilizing effect, for instance when there is a high level of expressed emotion from the person in a caring role [11,12]. Moreover, gender-specific differences in experiencing life as a PWE are poorly studied.
Relationships between knowledge, attitudes, stigma, anxiety and depression, and quality of life in epilepsy: A structural equation modeling
2018, Epilepsy and BehaviorCitation Excerpt :Anxiety and depression are common among patients with epilepsy; the rate varies between 20 and 55%. While the sensation of losing control, reduced self-confidence, excessive protection by the family, and failure in work and education life contribute to depression, negative attitudes that develop because of insufficient knowledge is another major factor [13]. There are many studies reporting that the rate of stigma is higher in patients who have negative attitudes towards the disease and thereby, anxiety and depression rates are also higher in these patients [3,17–20].
Does surgery help in reducing stigma associated with drug refractory epilepsy in children?
2018, Epilepsy and BehaviorCitation Excerpt :Though, there are studies which have shown lesser stigma scores in adult patients undergoing surgical treatment compared with medical treatment [5–7], there are no studies for pediatric age group. Stigma associated with epilepsy depends upon many factors including reduction in seizures, sociodemographic and psychosocial outcomes, and is inversely proportional to the quality of life [8–10]. Surgery for drug-resistant epilepsy (DRE) definitively improves the seizure outcomes, decreases mortality and unemployment rates [11].