Perception and psychosocial burden of people with epilepsy (PWE): Experience from Indonesia
Elna Nurjannah, Nurhaya Nurdin
, Andriani, Kusrini Kadar
Corresponding author
Faculty of Nursing, Hasanuddin University, Indonesia
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Ironically in the 21st century today, there are still people who think epilepsy is not a disease but as a result of occult powers, curses, trance, often associated with mental illness or a state with low intelligence. Epilepsy is still perceived as a disgrace.<a class="elsevierStyleCrossRef" href="#bib0105"><span class="elsevierStyleSup">1</span></a> Lack of knowledge about epilepsy or epilepsy among families and communities is the main reason why the problem of epilepsy can not be tackled properly.<a class="elsevierStyleCrossRef" href="#bib0110"><span class="elsevierStyleSup">2</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">World Health Organization<a class="elsevierStyleCrossRef" href="#bib0115"><span class="elsevierStyleSup">3</span></a> records that around 50 million people worldwide suffer from epilepsy, and around 80% of them living in low-middle income countries (LMICs). The prevalence of epilepsy in Indonesia in 2012, according to the Indonesian Neurology Doctor Specialist Association (PERDOSSI), ranged from 0.5 to 4% to the average prevalence of epilepsy of 8.2 per 1000 population. When the number of people in Indonesia ranges from 220 million, the number of people with epilepsy per year estimated is 250,000.<a class="elsevierStyleCrossRef" href="#bib0120"><span class="elsevierStyleSup">4</span></a> Based on the statistical data, it can be seen that the number of people with epilepsy (PWE) show a significant number, especially in developing countries, one of them in Indonesia. This is very worrying given that epilepsy can effect the quality of life of PWE because of the social and psychological effects experienced them. Epilepsy is often associated with a physical disability, mental disability, and severe psychosocial consequences for the sufferer.<a class="elsevierStyleCrossRef" href="#bib0125"><span class="elsevierStyleSup">5</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">International League against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) explain that one of the effects caused by epilepsy is social consequences. Important elements that need to be considered in the management of PWE not only seizures or convulsions but also its social consequences must be considered, such as secluded by society.<a class="elsevierStyleCrossRefs" href="#bib0130"><span class="elsevierStyleSup">6–8</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">The problem often faced by people with epilepsy usually are avoided or secluded by the community because there is still the fear that it is contagious and they are afraid that PWE would attack them if the seizures or convulsion is occuring.<a class="elsevierStyleCrossRef" href="#bib0145"><span class="elsevierStyleSup">9</span></a> This causes PWE to withdraw themselves and usually have less interaction with social or community.<a class="elsevierStyleCrossRef" href="#bib0150"><span class="elsevierStyleSup">10</span></a> One study conducted in Manado, Indonesia, showed the effect of PWE condition mentioned previously is difficult to get a job and generally tend to be unmarried because of shame or inferiority with other friends.<a class="elsevierStyleCrossRefs" href="#bib0155"><span class="elsevierStyleSup">11,12</span></a></p><p id="par0025" class="elsevierStylePara elsevierViewall">Dalkey, Gharaibeh and Faleh study in 2019 found that of the 200 total respondents, nearly half of participants (53%) show high psychosocial burden.<a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">12</span></a> The range of psychosocial burden perceived such as they always feel tired, they felt embarrassed because of epilepsy and they were worried because getting worse stigma from others because they think no one will be able to accept their condition.<a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">12</span></a></p><p id="par0030" class="elsevierStylePara elsevierViewall">The psychosocial problems faced by people with epilepsy become more significant than the medical issues they experienced. Treatment received by PWE such as social isolation, stigmatization, or disability, also effecting their family, which makes them prone to disharmony, anxiety excessive, and even one family can experience a decrease in self-esteem.<a class="elsevierStyleCrossRef" href="#bib0145"><span class="elsevierStyleSup">9</span></a> As a result many families of PWE do not want to recognize family members who suffer from epilepsy or secluded them from community.<a class="elsevierStyleCrossRef" href="#bib0145"><span class="elsevierStyleSup">9</span></a> In Indonesia, for the PWE and their family, epilepsy is not only a disease but also becoming a social problem, discrimination, and misconceptions that can close the education and employment opportunities for the PWE.<a class="elsevierStyleCrossRef" href="#bib0125"><span class="elsevierStyleSup">5</span></a></p><p id="par0035" class="elsevierStylePara elsevierViewall">Myths and misconceptions about Epilepsy still occurs and develops among people making a lot of assumptions about condition of epilepsy as infectious diseases.<a class="elsevierStyleCrossRefs" href="#bib0145"><span class="elsevierStyleSup">9,13</span></a> One of the effective coping strategies in dealing with any conflict is to receive help or support from siblings, parents, especially mothers, husband or wife, friends, professionals which will assist the individual in coping proper conduct in an attempt to face and solve problems.<a class="elsevierStyleCrossRef" href="#bib0145"><span class="elsevierStyleSup">9</span></a> The support of others makes PWE will not feel inferior; they would feel meaningful to others, so they can eliminate doubts or fears that might arise when dealing with problems from their condition.<a class="elsevierStyleCrossRefs" href="#bib0155"><span class="elsevierStyleSup">11,13</span></a></p><p id="par0040" class="elsevierStylePara elsevierViewall">In Indonesia, there are very few studies about Epilepsy and PWE, and to date, there is no published study exploring about PWE perception and problems they face. It is essential to understand what PWE think about their condition and what psychosocial burden they have as PWE. This information can be beneficial to provide knowledge about PWE and the people around them, what people think about epilepsy and PWE.</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Method</span><p id="par0045" class="elsevierStylePara elsevierViewall">This study used a qualitative method with a phenomenological approach. Phenomenology design enables researchers to be able to understand the uniqueness of the phenomenon of a person's life, that the reality of the lives of other people is different in each individual so that further research will explore and investigate the significance of the phenomenon.<a class="elsevierStyleCrossRef" href="#bib0170"><span class="elsevierStyleSup">14</span></a> This qualitative study will describe the experiences of PWE about their perceptions regarding their condition and perceived psychosocial burden they have. This research was conducted in Makassar City, Indonesia, from August to November 2018. In-depth interview was conducted to seven participantS (PWE) using snow-ball sampling. During the interview some participants were accompanied by their family to obtain more relevant data for this study. To maintain the confidentiality of participants, names, and initials used in this study from participants, P for participant, and KP family partisipant. Ethic for this study has been sought from the Faculty of Medicine Ethic Committee Universitas Hasanuddin (Ethic no: 1021/H4.8.5.31/PP36-KOMETIK/2018). Before the interview, participants were given to inform concent and explanation about this study, they can withdraw at any time. There was no psychological effect of this study to participants as information gathered was not privacy and only ask their experience as PWE. This interview was conducted in Bahasa (Indonesian Language) and the data analysis result was translated into English.</p><p id="par0050" class="elsevierStylePara elsevierViewall">Data obtained in the study treated with the qualitative narrative using a thematic analysis. Researchers analyzing data from interviews of various questions to obtain an overview of related informants experience something researchers want to be understood better. Process data analysis carried out simultaneously with the process of data collection.<a class="elsevierStyleCrossRef" href="#bib0175"><span class="elsevierStyleSup">15</span></a></p></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Results</span><p id="par0055" class="elsevierStylePara elsevierViewall">Overall, the results of the data analysis in this study showed that two big themes consisted of several sub-themes. The main themes are a perception about epilepsy and psychosocial burden. In perception there are two sub-themes which are community/public perception and self-perception about coping strategies, expectation, and reality. Psychosocial burden consists of three sub-themes, which are emotional aspects, anxiety about future and restriction.</p></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Discussion</span><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0055">Theme 1: Perception of epilepsy</span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0060">Sub-theme 1: Effect of community perception</span><p id="par0060" class="elsevierStylePara elsevierViewall">This perception consists of perception from the public about epilepsy that can affect PWE perception about their condition. Participants were told by their society or people around them that epilepsy is a contagious disease, and PWE is considered crazy. Thus, PWE is treated like people with mental health disorder, and they are not clever. This was mentioned by two participants as below:<span class="elsevierStyleDisplayedQuote" id="dsq0005"><p id="spar0025" class="elsevierStyleSimplePara elsevierViewall">People in my neighborhood think that I am crazy because I got this epilepsy, they told my family and me that this is mental health illness (P7)</p></span><span class="elsevierStyleDisplayedQuote" id="dsq0010"><p id="spar0030" class="elsevierStyleSimplePara elsevierViewall">I got dumped with my boyfriend when he found out that I have epilepsy…when I asked why he dumped me, he told me that he was afraid he would get epilepsy because it's contagious (P1)</p></span></p><p id="par0065" class="elsevierStylePara elsevierViewall">Some people still have negative beliefs about epilepsy.<a class="elsevierStyleCrossRef" href="#bib0110"><span class="elsevierStyleSup">2</span></a> This situation is still occurring in low-middle income countries such as Indonesia and Uganda as one study in North Sulawesi revealed that some people still think PWE is having mental illness<a class="elsevierStyleCrossRef" href="#bib0180"><span class="elsevierStyleSup">16</span></a> while study in Uganda show society perception attributing epilepsy to supernatural spirits, heredity, and preference of traditional medicine and healers to conventional medicine as a treatment for epilepsy.<a class="elsevierStyleCrossRef" href="#bib0110"><span class="elsevierStyleSup">2</span></a> This may due to lack of information regarding epilepsy for people especially in developing countries makes stigma about epilepsy still exist.<a class="elsevierStyleCrossRef" href="#bib0145"><span class="elsevierStyleSup">9</span></a> Some studies discussed the perception of epilepsy<a class="elsevierStyleCrossRefs" href="#bib0140"><span class="elsevierStyleSup">8,9,12,13,17</span></a> concluded that people still consider epilepsy as the disease and people still think of epilepsy as infectious diseases, mental illness and dangerous to other people, but in fact that epilepsy is not a highly contagious disease, not a mental disease but a condition of abnormal brain tissue in neurons work overload, and epilepsy is not a dangerous disease.<a class="elsevierStyleCrossRef" href="#bib0140"><span class="elsevierStyleSup">8</span></a></p></span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0065">Sub-theme 2: Self-perception in coping strategies, expectation and reality</span><p id="par0070" class="elsevierStylePara elsevierViewall">Participants stated that the support of family and friends is very helpful and become one coping strategy. Besides that, they also mentioned that their faith is helping them to deal with the problems. Thinking positive and grateful were other coping strategies that they use with their condition. As one of the participant said:<span class="elsevierStyleDisplayedQuote" id="dsq0015"><p id="spar0035" class="elsevierStyleSimplePara elsevierViewall">…whatever my condition is, my family always support me and be my side (P2)</p></span></p><p id="par0075" class="elsevierStylePara elsevierViewall">Their expectation is not to be avoided and secluded. They want the community to have a good understanding of epilepsy so people will not be afraid of them and have a negative belief towards their condition. They also want to have normal life such as having a job and get married. One participant mentioned that they want the employer will not differentiate them with others and treat them normally (P4).</p><p id="par0080" class="elsevierStylePara elsevierViewall">However, the reality they experience is often they were treated with excessive restriction; they were excluded and avoided even disliked. They do not have a job as there is no job opportunity for them when they are found to have epilepsy. One study explained that PWE wants to be seen as a normal human, not people with some disease and treated normally.<a class="elsevierStyleCrossRef" href="#bib0190"><span class="elsevierStyleSup">18</span></a> They do not want to be excluded and avoided because they are different. The differences between expectation and reality experienced by PWE might occur because of the culture and lack of information regarding epilepsy. In developing countries such as Indonesia and Uganda, culture and belief are still have a strong impact on their perception of something that makes the society still have a negative perception towards PWE.<a class="elsevierStyleCrossRefs" href="#bib0115"><span class="elsevierStyleSup">3,10,16,17</span></a></p></span></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0070">Theme 2: Psychosocial burden</span><p id="par0085" class="elsevierStylePara elsevierViewall">This theme has three sub-themes emerging from data, which are emotional aspects, anxiety about the future, and restriction.</p><p id="par0090" class="elsevierStylePara elsevierViewall">Emotional feeling as a result of psychosocial burden among PWE including lack of focus and makes them more emotional. P1 says that he is very sensitive, P7 said he had a temper, and P4 said that he often cried by himself. This emotional feeling also can be occurred because of bad experience that they receive from others. Some participants admitted that Besides emotional feeling, PWE also concerns about their future. They were teased, bullied, and looked down by their friends (P3, P5, P6). Their family also added that once of his son's friend wiped the seat, he has been seated because it is contiguous (KP3). Some studies have shown similar condition related to this emotional feeling and can cause depression on PWE.<a class="elsevierStyleCrossRefs" href="#bib0150"><span class="elsevierStyleSup">10,19</span></a> This condition due to over-protection of their family makes them not be able to enjoy their hobbies and other activity that interest them.<a class="elsevierStyleCrossRef" href="#bib0200"><span class="elsevierStyleSup">20</span></a> As a result, they feel restricted to do anything freely as their family will always look after and watch their activities.</p><p id="par0095" class="elsevierStylePara elsevierViewall">The situation above makes PWE concern about their future. One of participant told the researcher that her father never let her go out by herself and this makes her worried about her future, how she will be able to get a job or even get married (P7). PWE also have worried about their condition because it will affect their family's life and activity. One of the participants said:<span class="elsevierStyleDisplayedQuote" id="dsq0020"><p id="spar0040" class="elsevierStyleSimplePara elsevierViewall">…I am afraid to become a burden to my family…my parents always accompany me everywhere… (P2)</p></span></p><p id="par0100" class="elsevierStylePara elsevierViewall">Family of PWE has significant concern about their condition; this might be due to a lack of information regarding epilepsy.<a class="elsevierStyleCrossRef" href="#bib0130"><span class="elsevierStyleSup">6</span></a> The family also worried their child with epilepsy condition and what public think of their child thus makes the family will do anything to protect PWE. However, this over-protective attitude burden PWE because they feel restricted and limited to do their interest. Their worried about their future seems a common psychosocial burden experienced by PWE such as cannot achieve their dreams, cannot continue their study as a study from Jordan<a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">12</span></a> show that PWE was afraid that they would not be able to meet their future spouse.</p><p id="par0105" class="elsevierStylePara elsevierViewall">Although this psychosocial burden commonly occurs to PWE, however, this burden felt differently among PWE. It depends on how their family treated them and how supportive their family is.<a class="elsevierStyleCrossRefs" href="#bib0110"><span class="elsevierStyleSup">2,17</span></a></p></span></span><span id="sec0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0075">Conclusion</span><p id="par0110" class="elsevierStylePara elsevierViewall">This study describes the experience of people with epilepsy in one of the district in the eastern part of Indonesia. Two main themes come up, which is perception and psychosocial burden with several sub-themes, including their expectation, reality, and coping strategies, emotional aspects, anxiety about future and restriction. The study shows that there are still many negative perceptions arising from the mind of the public due to lack of knowledge related to epilepsy. Epilepsy is still considered a psychiatric illness, defect fool can be contagious and dangerous. Thus, it is timely for the government to pay more attention to this group and to improve information about epilepsy to society to prevent negative perception and attitude towards people with epilepsy.</p></span><span id="sec0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">Conflict of interest</span><p id="par0115" class="elsevierStylePara elsevierViewall">The authors declare no conflict of interest.</p></span></span>" "textoCompletoSecciones" => array:1 [ "secciones" => array:10 [ 0 => array:3 [ "identificador" => "xres1899094" "titulo" => "Abstract" "secciones" => array:4 [ 0 => array:2 [ "identificador" => "abst0005" "titulo" => "Objective" ] 1 => array:2 [ "identificador" => "abst0010" "titulo" => "Methods" ] 2 => array:2 [ "identificador" => "abst0015" "titulo" => "Result" ] 3 => array:2 [ "identificador" => "abst0020" "titulo" => "Conclusions" ] ] ] 1 => array:2 [ "identificador" => "xpalclavsec1642907" "titulo" => "Keywords" ] 2 => array:2 [ "identificador" => "sec0005" "titulo" => "Introduction" ] 3 => array:2 [ "identificador" => "sec0010" "titulo" => "Method" ] 4 => array:2 [ "identificador" => "sec0015" "titulo" => "Results" ] 5 => array:3 [ "identificador" => "sec0020" "titulo" => "Discussion" "secciones" => array:2 [ 0 => array:3 [ "identificador" => "sec0025" "titulo" => "Theme 1: Perception of epilepsy" "secciones" => array:2 [ 0 => array:2 [ "identificador" => "sec0030" "titulo" => "Sub-theme 1: Effect of community perception" ] 1 => array:2 [ "identificador" => "sec0035" "titulo" => "Sub-theme 2: Self-perception in coping strategies, expectation and reality" ] ] ] 1 => array:2 [ "identificador" => "sec0040" "titulo" => "Theme 2: Psychosocial burden" ] ] ] 6 => array:2 [ "identificador" => "sec0045" "titulo" => "Conclusion" ] 7 => array:2 [ "identificador" => "sec0050" "titulo" => "Conflict of interest" ] 8 => array:2 [ "identificador" => "xack667166" "titulo" => "Acknowledgment" ] 9 => array:1 [ "titulo" => "References" ] ] ] "pdfFichero" => "main.pdf" "tienePdf" => true "fechaRecibido" => "2019-05-29" "fechaAceptado" => "2019-07-15" "PalabrasClave" => array:1 [ "en" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Keywords" "identificador" => "xpalclavsec1642907" "palabras" => array:3 [ 0 => "Psychosocial burden" 1 => "Coping strategies" 2 => "People with epilepsy (PWE)" ] ] ] ] "tieneResumen" => true "resumen" => array:1 [ "en" => array:3 [ "titulo" => "Abstract" "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Objective</span><p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">This study aimed to investigate the perception of people with epilepsy (PWE) and their psychosocial burden.</p></span> <span id="abst0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Methods</span><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">This research used a qualitative method by using in-depth semi-structured interview technique to 7 PWE in Makassar.</p></span> <span id="abst0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0020">Result</span><p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">There are five themes arise from this study, which are the perception of epilepsy in people with epilepsy, the perceived psychosocial burden on people with epilepsy, coping strategies used by people with epilepsy, the expectations of people with epilepsy in the environment and the reality that occurs in people with epilepsy in Makassar.</p></span> <span id="abst0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Conclusions</span><p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">The results indicate that there are still many negative perceptions arise from people's minds due to the lack of knowledge related to epilepsy. As a result, PWE often are excluded and shunned by the community.</p></span>" "secciones" => array:4 [ 0 => array:2 [ "identificador" => "abst0005" "titulo" => "Objective" ] 1 => array:2 [ "identificador" => "abst0010" "titulo" => "Methods" ] 2 => array:2 [ "identificador" => "abst0015" "titulo" => "Result" ] 3 => array:2 [ "identificador" => "abst0020" "titulo" => "Conclusions" ] ] ] ] "NotaPie" => array:1 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Peer-review under responsibility of the scientific committee of the International Conference on Women and Societal Perspective on Quality of Life (WOSQUAL-2019). 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