|Year : 2015 | Volume
| Issue : 2 | Page : 61-65
Burden of stigma among relatives of Nigerian patients living with epilepsy
Lateef Olutoyin Oluwole, Adetunji Obadeji, Usman Mobolaji Dada
Department of Psychiatry, College of Medicine, Ekiti State University, Ado-Ekiti, Nigeria
|Date of Web Publication||16-Jul-2015|
Dr. Lateef Olutoyin Oluwole
Department of Psychiatry, College of Medicine, Ekiti State University, Ado-Ekiti
Source of Support: None, Conflict of Interest: None
Background: Epilepsy, a chronic noncommunicable disease is recognized as a major public health concern. Stigma is an important factor that has a negative influence on people with epilepsy (PWE) and their families. The burden for people with epilepsy and their families is greatest in poor countries. Aims: The aim of this study is to elicit the lived experiences of individuals who had experienced burden of stigma while they live and care for patients with epilepsy. Settings and Design: The participants in this study are relatives who are the caregivers of patients with epilepsy who visited the mental health unit of a tertiary health center in Southwest Nigeria. Materials and Methods: Sociodemographic data of participants were collected in addition to recorded significant statements following extensive interactions held with the participants. Thematic analyses of varying experiences of participants, as recorded, were done using the phenomenological method of Colazzi. Results: Nineteen participants were engaged in the study with 12 (63.2%) of them being females and half of the females being mothers. Child and spouse of patients of epilepsy were least likely as care givers. The mean age of participants was 38.3 years and mean duration of patients' illness was 5.6 years. Four major themes including prejudice, fear, shame, and social isolation were the most recurring of the -33 significant statements recorded from the participants. Conclusions: It is pertinent to have enhanced and sustained self-efficacy with great empathy toward the patients and their family members.
Keywords: Burden, epilepsy, family, stigma
|How to cite this article:|
Oluwole LO, Obadeji A, Dada UM. Burden of stigma among relatives of Nigerian patients living with epilepsy. J Health Res Rev 2015;2:61-5
|How to cite this URL:|
Oluwole LO, Obadeji A, Dada UM. Burden of stigma among relatives of Nigerian patients living with epilepsy. J Health Res Rev [serial online] 2015 [cited 2019 Dec 9];2:61-5. Available from: http://www.jhrr.org/text.asp?2015/2/2/61/160913
| Introduction|| |
Epilepsy is a general term for conditions with recurring seizures involving abnormal electrical discharge in the brain. Such activity in the brain results in involuntary change that may involve body movement, sensation, and consciousness or behavior. The World Health Organization (WHO) recognized epilepsy, a chronic noncommunicable disease, as a major public health concern with about 50 million people worldwide suffering from epilepsy.  Epilepsy accounts for 0.5% of the global burden of disease, thus it has significant implications in terms of health care needs. It is estimated that 80% of people suffering from epilepsy around the world reside in developing world such as Africa.  According to Jallon and Rwiza et al., nowhere is epilepsy-associated stigma more disabling than in sub-Saharan Africa, where epilepsy rate far exceeds those in developed countries. , The prevalence of epilepsy in the developing nations, which may include Nigeria, ranges from 5 to 10 per 1000 people.  Seizures are associated with higher rates of other diseases or psychosocial issues.  Despite being a common neurological disorder, epilepsy seems to be the least understood and most feared disorder in most parts of the world, , which is further complicated in developing countries by its traditional attribution to demonic possession, and the perception that it is transmissible by physical contact.
A study previously conducted in the Butajira, Ethiopia, reported that epilepsy was perceived to be the commonest mental problem in its occurrence but less severe condition than schizophrenia and other major depressive disorders. 
Knowledge about burden perception and enhancement of social support services goes a long way in improving the quality of life of patients and their families and also toward management of chronic illnesses such as epilepsy. 
Stigma is considered, in all cultures, to be the most important factors that has a negative influence on people with epilepsy (PWE) and their families.  The social burden for people with epilepsy and their families is greatest in poor countries; because there is more stigma, people with epilepsy are prevented from attending school, and have reduced chances of being married or employed, even when seizures would not render the work unsuitable or unsafe.  The impact of epilepsy rests not only on the individual patient, but also on the family and indirectly on the community. 
Stigma has been referred to by an American sociologist, Goffman, as an attribute that is "deeply discrediting" and allows the stigmatized individual to be seen by others as "not quite human." Goffman further introduced what is known as courtesy stigma that is acquired as a result of being related to a person with a stigma.  The moral weight attached to epilepsy not only applied to the affected person, but also threatened familial aspirations and life chances through a process of "courtesy stigma": Because of fear of family disgrace, people with epilepsy were typically kept at home and their diagnosis was kept a secret. 
The caregivers of persons with epilepsy undergo severe emotional, physical, and economic burden due to the nature, chronic disability, and stigma attached to the illness.  Epilepsy-associated stigma contributes substantially to the social, medical, and economic burden of disease for people with epilepsy (PWE), but little is known about its impact on caregivers of PWE. One in five of 100 mothers (20%) reported feeling stigmatized because of their child's epilepsy. 
This study aims to elicit, using a phenomenological approach, the lived experiences of individuals who are close relatives while they live and care for patients with epilepsy, and with the objective of identifying and describing the attendant burden of stigma.
| Materials and Methods|| |
To achieve the aim of this study in eliciting the lived experiences of individuals who had experienced burden of stigma while they live and care for patients with epilepsy, a phenomenological approach was adopted. This methodological frame work provides tools for profound exploration of human experience so as to enable appraisal of actual and totality of experiences of the participants. The 19 participants who consented to and completed this study are close relatives, and who are also the caregivers, of patients diagnosed with epilepsy who visited the mental health unit of our tertiary health center in Southwest Nigeria.
Efforts were made at achieving a significant degree of credibility, dependability conformability, and transferability as expected of a qualitative research. The participants were considered dependable as their intimacy with the patients revealed in the reliability of detailed information given in the course of history and course of patient's illness. Relatives who, themselves, suffer or had suffered seizure disorders were excluded from the study.
The interactions with participants by the authors aimed at eliciting the holistic experience of the relatives of patients managed for epilepsy in our facility. While in a relaxed environment, the essential structure of lived experience of participants was encouraged to be described in a "hold no bare" account." Open questions were adopted to establish rapport during the face-to-face conversation, which lasted between 60 and 90 min.
Each participant had visited the mental health facility at least twice, on appointments, within the period of three months for the study. The interviews were conducted in Yoruba language (the native and predominant language in the area of study) except for three of the participants. The three participants, however, had interviews conducted in English language because they were less fluent in the local language of Yoruba. The eventual translation and back translation of the responses in Yoruba language into English language was done by the first author who is proficient in both languages.
The instrument used included a proforma, filled by interviewers, to record the demographic data of both the participants (relatives) and the patients. The participants were encouraged to be relaxed while they freely bared their minds on issues of every day experience and what the experiences connote while answering open-ended and broad questions on their care of the patients. The interviews further narrowed to the specifics for the participants in respect of their individual experience of stigma while caring for the patients with epilepsy.
Ethical approval for the study was sought and received from the hospital ethics committee. Informed consents were given by the participants and the patients after the authors had explained the entire process of the interview, with the understanding that their confidentiality and rights to decline participation at any stage of the interaction guaranteed.
The seven-step Colaizzi's phenomenological method  was adopted as highlighted below:
- Transcribing all the subjects' descriptions
- Extracting significant statements (statements that directly relate to the phenomenon under investigation, i.e., stigma in this study)
- Creating formulated meanings
- Aggregating formulated meanings into theme clusters
- Developing an exhaustive description (i.e., a comprehensive description of the experience as articulated by the participants)
- Identifying the fundamental structure of the phenomenon
- Returning to participants for validation.
Thirty-three significant statements were extracted and clustered into four themes after exhaustive discussions by the authors. The various recordings and documentations by the authors were taken through the process of peer debriefing for qualitative research. The analysis was discussed by the authors and agreement was reached through the stages of the research.
| Results|| |
The study started with -23 participants but four defaulted in the course of the interviews. The study concluded with only 19 participants from whom significant statements were taken and recorded. [Table 1] shows some demographic variables.
Nineteen participants were engaged in the study with 12 (63.2%) of them being females and half of the females being mothers. Child and spouse of patients of epilepsy were least likely as care givers. The mean age of participants was 38.3 years and the mean duration of patients' illness was 5.6 years.
Thirteen (68%) of the caregivers as participants in this study were females; including mothers, two siblings, one guardian, and a daughter of PWE. The least relationship found among the participants included one spouse (5.3%) and a child (5.3%) of sufferers of epilepsy. Younger sufferers of epilepsy, as shown by the mean age of the patients, are more likely to be cared for by their parents (63.2%) among the participants. Fathers' mean age of 50.3 years revealed that fathers who were involved in the care of patients with epilepsy are much older than mothers who were equally involved.
Thirty-three significant statements were extracted and clustered into four themes: Prejudice, fear, shame, and social isolation. [Table 2] shows examples of themes as clustered from some of the significant statements recorded. [Table 3] shows examples of of themes and formulated meanings.
Fear: As a theme was expressed by most of the participants described scaring thoughts about the suddenness of each episode. The repeated feelings of uncertainty during episodes often demoralizing as thoughts of patient dying were pervasive. Most participants expressed fear of avoidance by other family members and friends because of their prejudice concerning communicability of the illness. One mother commented: "The people who could have helped deserted me and my son to our fate. All my tenants had vacated my house; afraid of contracting my son's fits." Many remarked about their worry about the probability or inability of young sufferers to attain their potential. One parent expressed her dilemma when probed for her fear, "Doctor, will this child ever be able to learn anything, at all? He is -21-year-old and he failed at attempts learning on three different vocations after he had been advised to withdraw from school due to poor academic performance."
Shame: "I was told the disgrace brought upon me by my daughter['s] illness may not end soon," a participant lamented. People tend to fear what they do not understand. Stigma is a social phenomenon. Feelings of shame were strongly associated with poor control of seizure as expressly recalled by many of the participants. "My niece has not brought moment for [of] respite since her fits started five years ago. Our neighbors' comments are disdainful," another participant remarked.
Social isolation: Majority of the participants expressed their experience of social isolation due to epilepsy. Only three of the participants did not make any statement suggesting social isolation. Ironically, a participant expressed, "thanks" to the other family members and the authority of the school her ward, who suffers from epilepsy, attends. Many of the participants bared their minds on the frustration encountered as a result of lack of support, prejudice, and ribald comments related to epilepsy. The only spouse, of a patient, among the participants revealed his frustration while he claimed his family members, including his in-laws had abandoned him "to bear the cross alone."
| Discussion|| |
This study was able to bring to the fore some of the lived experiences of stigma among family caregivers of patients suffering from a noncommunicable disease, epilepsy. Although stigmatizing attitudes are not limited to mental illness, the public seems to disapprove of persons with psychiatric disabilities significantly more than they do persons with related conditions such as physical illnesses. ,, Stigma, prejudice, and discrimination are closely related social constructs that affect many individuals based on age, religion, ethnic origin, or socioeconomic status. Stigma develops within a social matrix of relationship and interactions within a three-dimensional axis consisting of perspective, identity, and reactions.  Although stigma is a somewhat abstract issue, for many of those who live with PWE stigma is a source of profound loneliness, discrimination, and distress as related by the participants in this study. Shamsaei et al. observed that family members of bipolar disorder sufferers may avoid social situations and spend energy and resources on hiding the secret.  These may provide very "real" barriers to recovery. The effects of stigma also went beyond the impact of emotions to have longer-term impact; the most common was a lowered self-esteem and self-confidence,  with guilt in the lived experience of many of the participants. Similar to what Suto  reported, participants in our study PWE and their family members were frequently exposed to social isolation, stigma, and shame in social relationship and employment. As expressed by most of the participants, the unpredictability of moments of seizures occurring in the patients was found to be very distressing and disgraceful. Similarly, ethnographic studies in China and Vietnam have identified embarrassment and potential loss of face arising from having seizures publicly and the resultant negative psychological impacts. 
The recurring themes observed in this study have shown experiences of anxiety; feelings of helplessness or guilt are common among the family members of PWE; such that there may be a profound impact on day-to-day family life. Similar to what may be observed in some other developing countries, particularly Africans, family honor may be eroded. Family honor is an important core family value in a typical Nigerian family while people believe in hereditability of epilepsy as in an instance one of the participants who shared her experience, similar to some others, remarked: "Family members who were aspirants for traditional chieftaincy titles in our family lineage have been denied for reason our community believe epilepsy runs in our family."
An African study highlighted the problems of family members having to care for the person with epilepsy when all hands were needed to manage the demands of making a living. Social isolation as exemplified in this study by lack of support and avoidance by people who could have helped, remains a great concern. Evidence to date is that in both the developed and developing countries, epilepsy is perceived as stigmatizing. Reports from studies conducted in Nigeria, Africa, and Kenya show that people with epilepsy are discriminated against on the grounds that epilepsy is considered to be infectious.  This might be implied in prejudiced statement, shared by some participants, such as, "Our neighbors always refused to lend helping hands claiming the saliva of PWE might be contagious."
The occurrence of psychosocial problems related to epilepsy is well recognized and documented, and in certain situations these problems are believed to be more troublesome than the seizure disorders themselves. ,, The results of our study show that social stigma is a common experience of people with epilepsy and their relatives, as reported by majority of the participants in our study. The existence of themes such as feelings of shame, embarrassment, and guilt elicited among the participants in this study, resulting from the burden of epilepsy-related stigma is consistent with reports from other studies, which show a clear evidence of stigma among persons suffering from epilepsy. ,
It is worthy of note that mothers are more enduring in the care of their offspring suffering from chronic illness such as epilepsy. The four initial participants that defaulted were all men (fathers). Cook's noted in his study that mothers' and fathers' experiences are quite different because the responsibility of fulfilling the child's primary needs is solely reserved for the mother while father is kept away from the afflicted child. 
| Conclusion|| |
The social attitudes toward PWE have great impact on both the relatives and sufferers. It is pertinent to have enhanced and sustained self-efficacy with great empathy toward the patients and their family members. Furthermore, activities against stigma initiatives should be directed not only to PWE but also extended to their families.
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[Table 1], [Table 2], [Table 3]