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Beliefs and attitudes towards child epilepsy: A structural equation model
Seizure: European Journal of Epilepsy 84 (2021) 53–59
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Seizure: European Journal of Epilepsy journal homepage: www.elsevier.com/locate/seizure
Beliefs and attitudes towards child epilepsy: A structural equation model ˜ o b, Luanna Gomes da Silva a, Izabel Cristina Santiago Lemos de Beltra c Gyllyandeson de Araujo Delmondes , Cícero Damon Carvalho de Alencar b, ´ Simone Soares Damasceno b, Naildo Santos Silva d, Alissan Karine Lima Martins a, Rafaela Bertoldi e, Marta Regina Kerntopf c, Paulo Felipe Ribeiro Bandeira f, * a
Programa de P´ os-Graduaç˜ ao em Enfermagem do Departamento de Enfermagem, Universidade Regional do Cariri, Urca, Brazil Nursing Department, Universidade Regional do Cariri, Urca, Brazil Department of Biological Chemistry, Universidade Regional do Cariri, Urca, Brazil d Centro Universit´ ario Vale do Salgado, Universidade Regional do Cariri, Urca, Brazil e Universidade Federal do Rio Grande do Sul – UFRGS, Sport Club Internacional, Brazil f Grupo de Estudo, Aplicaç˜ ao e Pesquisa em Avaliaç˜ ao Motora – GEAPAM, Department of Physical Education, Universidade Regional do Cariri, Urca, Brazil b c
A R T I C L E I N F O
A B S T R A C T
Keywords: Epilepsy Beliefs Attitudes Childhood Structural equations model
Purpose: To analyze the possibly influencing factors of the beliefs and attitudes towards childhood epilepsy among users of the Family Health Strategy. Methods: The participants were 300 users from three units of the Family Health Strategy in one city of north eastern Brazil. This primary health care service has a multidisciplinary team and operates close to the com munity, seeks to provide comprehensive care with actions to promote health, prevention, recovery, rehabilitation of diseases and frequent injuries in the community. Data were collected through a socioeconomic questionnaire and the Brazilian version of The Epilepsy Beliefs and Attitudes Scale - Adult Version, analyzed using descriptive statistics and structural equation analysis. Results: Various associations were significant (p < 0.05), religion positively influences beliefs and attitudes (β: 1.040; p: 0.044); an increase in educational level negatively influences beliefs and attitudes (β: − 0.723; p: 0.040); being the parent of a child negatively influences beliefs and attitudes (β: 1.120; p: 0.043), but also positively influences beliefs (β: − 0.244; p: 0.028). Conclusion: This research contributed to identifying that having a religion, an increased educational level and being the parent of a child were factors that influence the beliefs and attitudes towards childhood epilepsy, aiming to contribute to a better implementation of actions directed to education in epilepsy.
1. Introduction Epilepsy is the most common chronic neurological disease in child hood, affecting roughly 5–10 children in every 1,000, with profound repercussions in the cognitive, psychological and social areas [1,2]. Such impacts arise from interactions between multiple factors involving the clinical aspects of the disease and adverse effects from drug treatments, as well as expressive negative psychosocial connota tions based on inappropriate beliefs and attitudes, which strengthen social stigma and expose children affected by the disease to discrimi natory and prejudiced attitudes, negatively affecting their quality of life [3,4].
The lack of information regarding the disease is believed to be an important contributing factor to the persistence of enormous social stigma, beliefs, attitudes and inappropriate behavior [2,4,5]. In addi tion, studies carried out in different parts of the world have identified associations between a higher proportion of negative beliefs and/or attitudes with males [6–8] and individuals with lower educational levels [6,7,9–12], however, such negative aspects can also be found among people with higher educational levels [2,13–17]. Moreover, studies composed predominantly by religious people show that religious-spiritual beliefs on the causes and treatment of ep ilepsy still persist [18–20]. Other studies indicate that parents of chil dren [21–24] and family members of people with epilepsy [25,26] have
* Correspondence author at: Regional University of Cariri, Rua Cel. Antˆ onio Luís - 1161, 63.100-000, Crato, Cear´ a, Brazil. E-mail address: [email protected] (P.F.R. Bandeira). https://doi.org/10.1016/j.seizure.2020.11.020 Received 25 June 2020; Received in revised form 24 November 2020; Accepted 26 November 2020 Available online 30 November 2020 1059-1311/© 2020 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
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Seizure: European Journal of Epilepsy 84 (2021) 53–59
negative beliefs and attitudes. Thus, efforts to verify the potential influence of those factors (sex, educational level, religion, family members of people with epilepsy and parents of children) on the beliefs and attitudes towards childhood ep ilepsy in different regions, such as Brazil, are important since those factors need to be considered when implementing educational actions to reduce the stigma, beliefs and negative attitudes of the general com munity towards affected children. In this context, the Family Health Strategy (FHS), which was set up as a gateway to health services, having great proximity to the community, assists individuals with different health needs at the Primary Care level and stands out for its frequent health education practices [27]. There fore, FHS units are a conducive environment for implementing actions towards epilepsy education, being essential that health professionals, associated with those actions, be aware of the factors capable of influ encing the beliefs and attitudes of the population regarding the disease. Thus, this study aimed to analyze the possibly factors influencing the beliefs and attitudes of the general population towards childhood epi lepsy among users of FHS units. Here we show that being religious positively influenced increased beliefs and attitudes on the neurological genesis of epilepsy. An increased educational level influenced increased negative beliefs and attitudes on the occurrence of epileptic seizures associated with changes in time and psychophysical aspects. Being the parent of a child influ enced increased negative beliefs and attitudes, which also influencing positive beliefs.
items, respectively. Additionally, the 46 items address both positive and negative beliefs and attitudes towards epilepsy [4,29]. Data obtained from the socioeconomic questionnaire was analyzed using descriptive statistics (absolute and relative values) with the JASP software (Version 9.0.1). For the data obtained from part II of the EBAS-Adult Version tool, a structural equation analysis [30] was performed with the Mplus soft ware and divided into two steps: Firstly, a confirmatory factor analysis of the 46 items present in part II of the tool was performed to validate the fit of this theoretical measurement model. For this, the goodness of fit of the 46 items with their neurological, metaphysical and environ mental/psychophysical dimensions was evaluated. Secondly, an esti mation of the structural model was performed, which analyzed the relationship of the 46 items grouped in the three dimensions (neuro logical, metaphysical and environmental/psychophysical) with the variables: sex, religion, educational level. For the parent of a child variable, we considered all participants who reported being parents of a child with or without a diagnosis of epilepsy. For the educational level variable, educational levels adopted in Brazilian education were considered: Incomplete and complete Elementary School; Incomplete and complete High School; Incomplete and complete University Education. In both of the structural equation models, theoretical and structural, the correlation coefficients from all paired combinations of the indicator variables were estimated according to the nature of the variable. The Weighted Least Squares estimation method [31] was used with all models, since it is the most appropriate when using categorical vari ables, which estimated the standardized direct and total effects [32]. The Comparative Fit Index (CFI), which indicates sample quality, the Tucker Lewis Index (TLI), which addresses the items’ number ratio for the sample number, and the RMSEA, which shows the residual value, were used to assess the fit of the model. Thus, to infer the model adjustment validity, an approximate value of 0.80was considered for the CFI and TLI [33], while RMSEA values from 0 to 0.08 were considered an acceptable fit [34]. In this research, the requirements of the Guidelines and Norms of Research Involving Human Beings, regulated by Resolution 466/12 of the National Health Council, were met. The project received an opinion of approval from the Research Ethics Committee, under number 2.895.570 and the Informed Consent Form was signed by the participants.
2. Materials and methods This is a quantitative study. The research was conducted in three FHS units located in the urban area in one city of northeastern Brazil. The participants involved in the research were registered users at the FHS units, who were present and available at the time of data collection at the institution. In addition, the following aspects were also considered as the inclusion criteria in the study: be aged between 18 and 59 years old and have some educational level. Exclusion criteria included: people with allopsychic and autopsychic disorientation; those suffering from psychiatric disorders that may alter their understanding of reality; as well as sedated users, who may expe rience changes, to a greater or lesser extent, in their motor or mental functions. Participants were contacted in the FHS waiting rooms, selecting those who self-reported meeting the inclusion criteria and agreed to participate in the research. The sample calculation was based on struc tural equation modeling techniques. The calculation is based on the maximum permitted levels for type I and type II errors, the acceptable limits for the root mean square error of approximation (RMSEA) (be tween 0.5 and 0.8) and the degrees of freedom of the model [28]. Data collection took place between September and October 2018. To this end, participants individually answered a questionnaire for socio economic characterization. Thereafter, participants were instructed to answer part II of the Brazilian version of The Epilepsy Beliefs and Atti tudes Scale (EBAS) - Adult Version, in order to investigate their beliefs and attitudes towards childhood epilepsy. The tool is divided into: Part I with six questions addressing the participant’s general knowledge and experience with epilepsy; Part II containing a story highlighting the symptoms and behaviors during and after an epileptic seizure in a child, followed by 46 beliefs and attitudes associated with childhood epilepsy [29]. In part II, participants were instructed to read the story and select, from a four-point Likert scale, which of the following response alter natives represented the intensity/degree of their belief for each of the 46 items: (1) I don’t believe it, (2) I believe it a little, (3) I believe it a lot, (4) I completely believe it [29]. The 46 items are divided into three dimensions: neurological, metaphysical and environmental/psychophysical with 13, 7, and 26
3. Results 3.1. Profile of the survey participants As shown in (Table 1), 300 subjects aged between 18 and 59 years old, mostly female (82.7 %), participated in the research. Regarding the marital status of the participants, 51.7 % reported being single. Most participants (42.7 %) had completed high school, 69.3 % claimed to be of the Catholic religion and 66.0 % received up to 1minimumwage in monthly income. Fifty-seven professions were cited, with housekeeper as the most common occupation (28.7 %). 3.2. Validation of the measurement model The general fit index of the model presented excellent values (CFI = 0.90; TLI = 0.91; RMSEA 0.05), indicating data adherence to the theoretical construct evaluated by the EBAS - Adult Version instrument in Portuguese. Fig. 1 shows the factor weightings, where most items were accept able, ranging from 0.32 to 0.78, with some exceptions. The factor weightings ranged from 0.32 to 0.54 in the neurological dimension, except for items 15, 35 and 37, which obtained low factor weightings of 0.10, 0.17 and 0.29, respectively. In the metaphysical dimension, the factor weightings ranged from 0.53 to 0.68, except for item 32, with 54
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religion, educational level, having a relative with epilepsy and being the parent of a child (Fig. 2). Fig. 2 shows that the association results were significant (p < 0.05) for three variables (religion, educational level and being the parent of a child) in different dimensions (neurological, metaphysical and envi ronmental/psychophysical). The variables sex and relatives did not present values considered significant. Having religion positively influenced beliefs and attitudes in the neurological dimension (β: 1,040; p: 0.044). An increase in educational level negatively influenced beliefs and attitudes in the environmental/ psychophysical dimension (β: − 0.723; p: 0.040). Being the parent of a child negatively influenced beliefs and attitudes in the environmental/ psychophysical dimension (β:1,120; p: 0.043), as well as positively influenced beliefs in the metaphysical dimension (β:− 0.244; p: 0.028). It is noteworthy that only one participant was the mother of a child with epilepsy, the other participants reported that their child did not have the disease.
Table 1 Profile of the participants. Crato-CE, Brazil, 2018. Variables
Institution: ESF
Gender Female Male Age Group 18− 25 26− 35 36− 49 50− 59 Marital Status Single Married Stable Union Separate Widow/Widower Educational level Elementary School High School University education Religion Catholic Evangelical Spiritualism Umbanda Jehovah’s Witness No religion Occupation Homemaker Student Teacher Other professions Unemployed Monthly family income < 1 minimum wage 1 - 2 minimum wages 2 - 3 minimum wages > 3 minimum wages Relatives with epilepsy Brother or sister Cousin Nephew or niece Uncle or aunt Mother Husband Father Son Grandson Parent of a child 0− 11 years old
Nº 300
Percentage (%)
248 52
82.7 17.3
81 89 88 42
27.0 29.7 29.3 14.0
155 106 26 6 7
51.7 35.3 8.7 2.0 2.3
66 167 67
22.0 55.7 22.3
208 54 1 2 1 34
69.3 18.0 0.3 0.3 0.7 11.3
86 37 18 150 9
28.7 12.3 6.0 50.0 3.0
198 64 30 8
66.0 21.3 10.0 2.7
16 21 13 10 7 3 2 1 1
5.3 7.0 4.3 3.3 2.3 1.0 0.7 0.3 0.3
120
40.0
4. Discussion The results obtained in this study showed that, in the measurement model validation, most of the 46 items in part II of the Brazilian version of the EBAS - Adult Version presented acceptable factorial weightings, showing good adjustment between the items and their dimensions (neurological, metaphysical and environmental/psychophysical), with general adjustment indices also being excellent, indicating data adher ence to the theoretical construct evaluated by the EBAS. The results also indicate that the measurement model may have an even better fit without items 1, 15, 17, 22, 32, 35, 36 and 37, which obtained low factor weightings. As most of the items presented acceptable factor loadings, demon strating good adjustment in their dimensions, and the general adjust ment indexes were also acceptable, we chose not to exclude from the scale the items that demonstrated low factor loading, because, when they were evaluated from the theoretical point of view, they were valid beliefs and attitudes to be investigated and analyzed: (1)believe that the use of herbs or plants (natural medicine) is the best health care for a child with epilepsy; (15) believe that a doctor is the best person to assist a child with epilepsy; (17) believe that a child with epilepsy can swim when accompanied by the parents; (22) believe that a child with epi lepsy must participate in all physical activities at school; (32) believe that a child has epilepsy because someone put an "evil eye" on his/her mother when she was pregnant; (35) believe that we should call an ambulance when a child has a seizure; (36) believe that the parents of a child with epilepsy continually fear the possibility of their child having a seizure at any time; (37) believe that a genetic defect can cause epilepsy in a child. The structural model analysis also demonstrated acceptable general adjustment rates, reinforcing the reliability of the findings from this study, which evidenced a significant association between beliefs and attitudes towards childhood epilepsy with having a religion, increased educational level and being the parent of a child. Having a religion influenced increased positive beliefs and attitudes pertaining to the neurological dimension of the EBAS-Adult version tool, which are supported by a scientific basis when dealing with the neuro logical and genetic genesis of epilepsy [4,35], and includes believing that a child may have epilepsy because of brain abnormality, brain damage at birth, genetic defects or serious illnesses affecting the brain, as well as having a physician named as the best professional to care for the affected child. It is noteworthy that 88.6 % of participants declared having a reli gion, and the vast majority was Christian (87.3 %),with the findings leading us to infer that the historical belief constructed between re ligions and associated epilepsy, such as the cause of the disease being supernatural (demonic possession) or from higher powers (God’s will) [18,36,37],which require religious practices for a treatment or cure [18,
Source: Search Data, 2018.
0.03. In the environmental/psychophysical dimension, factor weight ings ranged from 0.33 to 0.78, except for items 1, 17, 22 and 36, which obtained low factor weightings of 0.23, 0.05, 0.04 and 0.20, respectively. Since most items obtained acceptable factor weightings, presented a good adjustment for their dimensions and the overall adjustment indices were also excellent, items presenting unacceptable results were not excluded from the scale as they were considered valid from a theoretical viewpoint. Thus, there were no changes in the tool, keeping the causal structural equation analysis of all EBAS - Adult Version items in Portu guese the same. 3.3. Structural model: validation and association between variables In the structural model validation, the analysis indicated that the CFI/TLI/RMSEA general adjustment indices were acceptable, with values of 0.90, 0.91, 0.04, respectively, thus ensuring the reliability of this model, which includes the association of the 46 items distributed across the three dimensions (neurological, metaphysical and environ mental/ psychophysical) from Part II of the tool with the variables: sex, 55
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Fig. 1. Measurement model from part II of the Brazilian version of the EBAS - Adult Version. Source: Search Data, 2018.Caption: q: question; amb/pis: environmental/psychophysical; met: metaphysical; neu: neurological.
Fig. 2. Structural model from part II of the Brazilian version of the EBAS -Adult Version. Source:Search Data, 2018.Caption: q: question; amb/pis: environ mental/psychophysical; met: metaphysical; neu: neurological; filho: parent of a child.; sco: educational level; rel: religion; par: having a relative with epilepsy and; sex: gender.
37,19], did not prevail. Having a religion in this study influenced the positive belief that epilepsy is a neurological disease, caused by a factor that affects the brain (injury, abnormality, genetic alteration or serious illness) and requires medical treatment. These findings corroborate the study by Rafael et al. [6], who investigated the knowledge and attitudes towards epilepsy in France, including 1777 participants from the general population in the sample, where49.2 % reported being Christians, with most participants agreeing that epilepsy is not a supernatural disease, correctly identifying brain injury as one of its possible causes, in addition to recommending a
doctor as the most appropriate to treat a person with epilepsy. However, the results from this study differ from those found in the recent survey by Kiwanuka and Olyet [20], carried out with 220 adults in Uganda. The authors observed that, even with participants being primarily Christian (79.3 %), the majority of the interviewees attributed the cause of epilepsy to supernatural spirits (40.2 %) and 52.1 % preferred traditional medicine or healers as treatment instead of treat ment by a doctor. It is noteworthy that the results found in the present study cannot be generalized for all religions, as there was a predominance of Christianity 56
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in the present sample, while a diversity of religions exist throughout the world, each of which have different norms and doctrines, and their in fluences on beliefs and attitudes towards epilepsy can be investigated in future research. As for educational level, this study showed that an increase in educational level influenced increased negative beliefs and attitudes in the environmental/psychophysical dimension. This dimension ad dresses negative beliefs and attitudes on the occurrence of epileptic seizures due to: sudden changes in weather or lunar phases, playing in the sun for a long time, traveling in vehicles without air circulation, being angry or bored, certain foods/drinks and doing a lot of school work, including thinking that someone can become epileptic by touching the sick child, that the affected child should be kept away from other people and that epileptic seizures can be stopped with water. In addition, this dimension includes believing that the use of natural medicine (use of herbs) is the best treatment for the disease, that the child often has difficulties at school and that parents try to hide the child’s illness from others. This finding was different from other studies that found that the lowest level of school education was associated with a higher proportion of negative beliefs and/or attitudes towards epilepsy [6,7,9–12]. How ever, studies also show that such negative aspects can also be found among people with higher educational levels, including high school and university levels [2,13–17]. In this study, the majority of the sample was comprised of people with a high school level of education, 55.7 %, and 12.3 % with university education level. Based on research findings [13,38], including educational programs on epilepsy for schoolchildren and university students is necessary, as this is a tool significantly associated with increased knowledge and positive attitudes towards the disease. Several studies indicate that a population’s lack of information on epilepsy contributes to the persistence of stigma, beliefs and negative attitudes [2,5,7,39]. However, epilepsy is not a regularly discussed topic at schools in many countries. Thus, many people support erroneous misconceptions about the disease [40]. Therefore, it is likely that there is still a need for a public education approach towards epilepsy in the school and university curriculum of the region where this study was conducted. As such, a participant’s in crease in educational level did not guarantee access to a greater level of epilepsy education in this study, which reinforces the notion that there is little adequate knowledge and, consequently, negative beliefs and attitudes. A study by Murthy et al. [13] indicates that health education actions on epilepsy should be transmitted at all school levels to increase knowledge. The authors clearly show that, if knowledge about epilepsy increases, people will have positive attitudes and good practices, while a lack of knowledge leads to negative attitudes and practices. Educational strategies aimed at training and raising awareness of epilepsy for students and teachers are important [2,7,13,14,16,38,40]. This education needs to address information on the cause, treatment and transmission of the disease, as well as involve guidance on the man agement of epilepsy in everyday life, clarifying existing prejudices and fear [41,42]. In this study, being the parent of a child influenced increased negative beliefs and attitudes within the environmental/psychophysical dimension, such as believing a child may have epileptic seizures due to: being angry or bored, playing in the sun for a prolonged time, sudden changes in weather (becoming very hot/cold/humid/rainy), certain foods/drinks, changes in lunar phases or traveling in vehicles without air circulation, in addition to believing that epileptic seizures can cease with a glass of water, or that epilepsy can be contagious and parents try to hide that their children have epilepsy. Being the parent of a child also influenced positive beliefs in the metaphysical dimension such as believing that faith in a higher power helps coping with epilepsy. In this study, most parents did not have a child with epilepsy; however, the fact that they were the mother or father of a child possibly
aroused affection for other children with epilepsy, generating positive and negative beliefs, since, according Wright et al. [43], beliefs comprise three components: cognitive, affective and behavioral; with the affective component being responsible for instigating the occurrence of favorable or unfavorable feelings towards an object, event or behavior. We also observed in this study that parents of children believed that several factors could cause epileptic seizures. This may be because parents’ fears and concerns about a child’s epilepsy may motivate the adoption of overprotection, which can reinforce negative beliefs and attitudes towards the disease, this being a natural reaction to wanting to protect the child, where they end up assuming defensive behaviors such as restricting the children from partaking in several activities to avoid epileptic crises since they believe that any activity can precipitate a crisis [21,44–49]. Parents’ misinformation on childhood epilepsy may act as an epicenter of overprotection, inappropriate knowledge and negative practices [24,45,46]. Thus, parents’ misinformation in this study may have been a fundamental reason for negative beliefs and attitudes to wards epilepsy, which reinforces the need to improve the degree of parental knowledge on the cause and management of epilepsy, as well as allow them to communicate their fears, doubts and beliefs [21,24,45, 46]. It is noteworthy that the present study used a specific population in the Northeast region of Brazil and cannot be generalized for the whole country. Never the less, it is worth considering that this population re sides in a Brazilian region with development characteristics common in emerging countries, and, thus, may have implications for the under standing of aspects that influence childhood epilepsy in those regions. In this sense, it is important to highlight the relevance of studies from different locations, as the way epilepsy is viewed involves the perpetu ation of beliefs and attitudes, as well as sociocultural conjunctures from each society [14,50]. Gajjar [35] conducted a study focusing on the beliefs and attitudes towards epilepsy in children, which indicated the cultural characteris tics of a group, personal experiences with epilepsy, exposure to accul turation and/or interactions with different cultures as fundamental factors in the construction of different beliefs surrounding childhood epilepsy. Bartolini, Bell and Sander [51] also devoted themselves to reviewing multicultural challenges in epilepsy, aiming to raise aware ness to the importance of sociocultural knowledge. Therefore, the living context of the target population of this study needs to be considered. We noticed that the beliefs and attitudes towards childhood epilepsy were influenced by having a religion, an increase in educational level and being the parent of a child. The study also showed that negative beliefs and attitudes persist among FHS unit users, and we suggest that health professionals working in those services develop health education actions to improve knowledge on the cause, treatment and transmission of epilepsy. The nurse’s role is highlighted as an active agent in health educational activities at FSH units, where they are able to conduct approaches focused on epilepsy, involving parents of chil dren in the FHS scenario, students and teachers in the school environ ment or other community settings. In addition, the development of educational campaigns for the community and even training and awareness actions for health pro fessionals themselves is essential, so that they can pass on to the popu lation the correct information and demystify associated negative beliefs and attitudes towards epilepsy [8,10,13,16,21,24]. It is very important to clarify negative beliefs and attitudes mainly about the occurrence of epileptic seizures in the child resulting from sudden changes in weather (becoming very hot/cold/humid/rainy) or lunar phases, playing in the sun for a long time, being angry or bored, traveling in vehicles without air circulation, certain foods/drinks and doing a lot of schoolwork, in addition to beliefs that someone can become epileptic by touching the sick child, that the affected child should be kept away from other people, that epileptic seizures can be stopped with water and trying to hide from others that the child has 57
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epilepsy. Efforts to increase the knowledge of the community on epilepsy can improve the quality of life of affected children, since it has the possibility of minimizing misunderstandings that support the stigmatization of those children in the society where they live.
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New York: BasicBooks; 1996. p. 44–71. [44] Thompson P, Upton D. Epilepsy and quality of life: quality of life in family members of persons with epilepsy. 2ª ed. Nova York: Raven Press; 1994. p. 19–31. [45] Renardin D, Soares LG, Soares LG, Higarashi IH, Abreu IS. Epilepsy bearing children: view point and family hood. Rev Fun Care 2019;11:1065–71. [46] Fernandes PT, Souza EAP. Identification of family variables in parents’ groups of children with epilepsy. Arq Neuropsiquiatr 2001;59:854–8. [47] Mendes T, Crespo C. Adaptaç˜ ao individual e familiar naepilepsiapedi´ atrica: revis˜ aoempíricoconceptual. Psicol SaúdeDoenças 2014;15:314–34. [48] Rodenburg R, Meijer AM, Scherphof C, Carpay J, Augustijn P, Aldenkamp AP, et al. Parenting and restrictions in childhood epilepsy. Epilepsy Behav 2013;27:497–503.
5. Conclusions The findings of this study emphasize that having a religion, an increased educational level and being the parent of a child were factors influencing the beliefs and attitudes of the target population regarding childhood epilepsy. It is noteworthy that the present research was limited to only approaching users at FHS units in an urban area, other limitations were that, upon evaluating whether or not the patients met the research in clusion criteria, most participants had a religion and were female, and few participants had a family member or a child with epilepsy. However, given the scope of the addressed theme, further research is needed to encompass individuals from different contexts, identifying other vari ables capable of influencing the dissemination of negative beliefs and attitudes towards the disease and how healthcare professionals may develop and disseminate successful healthcare educational strategies within healthcare education for epilepsy care. Declaration of Competing Interest The authors declare no conflict of interest. Acknowledgments We thank the nursing staff and the administrative agents working in the FHS for the welcome and necessary support. References [1] Brasil. Minist´erio da Saúde. Portaria nº 1.319, de 25 novembro de. Aprova o ProtocoloClínico e DiretrizesTerapˆ euticas da Epilepsia. Available at: http://bvsms. saude.gov.br/bvs/saudelegis/sas/2013/prt1319_25_11_2013.html. (Accessed: Mar 30, 2018). 2013. [2] Zanni KP, Matsukura TS, Maia Filho HS. Beliefs and attitudes about childhood epilepsy among school teachers in two cities of southeast Brazil. Epilepsy Res Treat 2012;1:1–13. [3] Hopker CC, Berberian AP, Massi G, Willig MH, Tonocchi R. A pessoa com epilepsia: percepç˜ oesacerca da doença e implicaç˜ oesnaqualidade de vida. CoDAS 2017;29: 1–8. [4] Zanni KP. Adaptaç˜ ao transcultural do instrumento The Epilepsy Beliefs and Atitudes Scale: Estudocomparativo entre pais e professores. S˜ ao Carlos: Dissertaç˜ ao do MestradoemEducaç˜ ao Especial, Universidade Federal de S˜ ao Carlos; 2010. [5] Silva CRA, Cardoso ISZO, Machado NR. Consideraç˜ oessobreepilepsia. Bol Científ Pediatr 2013;2:71–6. [6] Rafael F, Dubreuil CM, Burbaud F. Knowledge of epilepsy in the general population based on two French cities: implications for stigma. Epilepsy Behav 2010;17:82–6. [7] Spatt J, Bauer G, Baumgartner C, Feucht M, Graf M, Mamoli B, et al. Predictors for negative attitudes toward subjects with epilepsy: a representative survey in the general public in Austria. Epilepsia 2005;46:736–42. [8] Saengsuwan J, Boonyaleepan S, Srijakkot J, Sawanyawisuth K. Public perception of epilepsy: a survey from the rural population. J Neurosci Behav Health 2009;1: 6–11. [9] Caveness W, Gallup G. A survey of public attitudes towardsepilepsy in 1979, with an indication of trends over the past 30 years. Epilepsia 1980;21:509–18. [10] Jensen R, Dam M. Public attitudes towards epilepsy in Denmark. Epilepsia 1992; 33:459–63. [11] Novot´ na I, Rektor I. The trend in public attitudes in the Czech republic towards persons with epilepsy. Eur J Neurol 2002;9:535–40. [12] Saengpattrachai M, Srinualta D, Lorlertratna N, Pradermduzzadeeporn E, Poonpol F. Public familiarity with, knowledge of, and predictors of negative attitudes toward epilepsy in Thailand. Epilepsy Behav 2010;17:497–505. [13] Murthy MKS, Govindappa L, Marimuthu P, Dasgupta M. Exploring knowledge, attitude, and practices in relation to epilepsy among undergraduates for effective health promotion: initial evaluation. J Educ Health Promot 2019;8:122–30. [14] Thapa L, Bhandari TR, Shrestha S, Poudel RS. Knowledge, beliefs, and practices on epilepsy among high school students of Central Nepal. Epilepsy Res Treat 2017: 1–7.
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[49] Ibrahim HK, Shata ZN. The relationship between mothers’ epilepsy-related knowledge and their healthcare practices and attitudes, Alexandria, Egypt. ASNJ 2017:19.
[50] Kremer CA, Souza SR, Oliveira AD. “Meu c´erebro ´ e morto”: relato de experiˆenciasobre um caso de epilepsia. Rev Multidiscipl Educ 2017;4:32–47. [51] Bartolini E, Bell GS, Sander JW. Multicultural challenges in epilepsy. Epilepsy Behav 2011;20:428–34.
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Contents lists available at ScienceDirect
Seizure: European Journal of Epilepsy journal homepage: www.elsevier.com/locate/seizure
Beliefs and attitudes towards child epilepsy: A structural equation model ˜ o b, Luanna Gomes da Silva a, Izabel Cristina Santiago Lemos de Beltra c Gyllyandeson de Araujo Delmondes , Cícero Damon Carvalho de Alencar b, ´ Simone Soares Damasceno b, Naildo Santos Silva d, Alissan Karine Lima Martins a, Rafaela Bertoldi e, Marta Regina Kerntopf c, Paulo Felipe Ribeiro Bandeira f, * a
Programa de P´ os-Graduaç˜ ao em Enfermagem do Departamento de Enfermagem, Universidade Regional do Cariri, Urca, Brazil Nursing Department, Universidade Regional do Cariri, Urca, Brazil Department of Biological Chemistry, Universidade Regional do Cariri, Urca, Brazil d Centro Universit´ ario Vale do Salgado, Universidade Regional do Cariri, Urca, Brazil e Universidade Federal do Rio Grande do Sul – UFRGS, Sport Club Internacional, Brazil f Grupo de Estudo, Aplicaç˜ ao e Pesquisa em Avaliaç˜ ao Motora – GEAPAM, Department of Physical Education, Universidade Regional do Cariri, Urca, Brazil b c
A R T I C L E I N F O
A B S T R A C T
Keywords: Epilepsy Beliefs Attitudes Childhood Structural equations model
Purpose: To analyze the possibly influencing factors of the beliefs and attitudes towards childhood epilepsy among users of the Family Health Strategy. Methods: The participants were 300 users from three units of the Family Health Strategy in one city of north eastern Brazil. This primary health care service has a multidisciplinary team and operates close to the com munity, seeks to provide comprehensive care with actions to promote health, prevention, recovery, rehabilitation of diseases and frequent injuries in the community. Data were collected through a socioeconomic questionnaire and the Brazilian version of The Epilepsy Beliefs and Attitudes Scale - Adult Version, analyzed using descriptive statistics and structural equation analysis. Results: Various associations were significant (p < 0.05), religion positively influences beliefs and attitudes (β: 1.040; p: 0.044); an increase in educational level negatively influences beliefs and attitudes (β: − 0.723; p: 0.040); being the parent of a child negatively influences beliefs and attitudes (β: 1.120; p: 0.043), but also positively influences beliefs (β: − 0.244; p: 0.028). Conclusion: This research contributed to identifying that having a religion, an increased educational level and being the parent of a child were factors that influence the beliefs and attitudes towards childhood epilepsy, aiming to contribute to a better implementation of actions directed to education in epilepsy.
1. Introduction Epilepsy is the most common chronic neurological disease in child hood, affecting roughly 5–10 children in every 1,000, with profound repercussions in the cognitive, psychological and social areas [1,2]. Such impacts arise from interactions between multiple factors involving the clinical aspects of the disease and adverse effects from drug treatments, as well as expressive negative psychosocial connota tions based on inappropriate beliefs and attitudes, which strengthen social stigma and expose children affected by the disease to discrimi natory and prejudiced attitudes, negatively affecting their quality of life [3,4].
The lack of information regarding the disease is believed to be an important contributing factor to the persistence of enormous social stigma, beliefs, attitudes and inappropriate behavior [2,4,5]. In addi tion, studies carried out in different parts of the world have identified associations between a higher proportion of negative beliefs and/or attitudes with males [6–8] and individuals with lower educational levels [6,7,9–12], however, such negative aspects can also be found among people with higher educational levels [2,13–17]. Moreover, studies composed predominantly by religious people show that religious-spiritual beliefs on the causes and treatment of ep ilepsy still persist [18–20]. Other studies indicate that parents of chil dren [21–24] and family members of people with epilepsy [25,26] have
* Correspondence author at: Regional University of Cariri, Rua Cel. Antˆ onio Luís - 1161, 63.100-000, Crato, Cear´ a, Brazil. E-mail address: [email protected] (P.F.R. Bandeira). https://doi.org/10.1016/j.seizure.2020.11.020 Received 25 June 2020; Received in revised form 24 November 2020; Accepted 26 November 2020 Available online 30 November 2020 1059-1311/© 2020 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
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negative beliefs and attitudes. Thus, efforts to verify the potential influence of those factors (sex, educational level, religion, family members of people with epilepsy and parents of children) on the beliefs and attitudes towards childhood ep ilepsy in different regions, such as Brazil, are important since those factors need to be considered when implementing educational actions to reduce the stigma, beliefs and negative attitudes of the general com munity towards affected children. In this context, the Family Health Strategy (FHS), which was set up as a gateway to health services, having great proximity to the community, assists individuals with different health needs at the Primary Care level and stands out for its frequent health education practices [27]. There fore, FHS units are a conducive environment for implementing actions towards epilepsy education, being essential that health professionals, associated with those actions, be aware of the factors capable of influ encing the beliefs and attitudes of the population regarding the disease. Thus, this study aimed to analyze the possibly factors influencing the beliefs and attitudes of the general population towards childhood epi lepsy among users of FHS units. Here we show that being religious positively influenced increased beliefs and attitudes on the neurological genesis of epilepsy. An increased educational level influenced increased negative beliefs and attitudes on the occurrence of epileptic seizures associated with changes in time and psychophysical aspects. Being the parent of a child influ enced increased negative beliefs and attitudes, which also influencing positive beliefs.
items, respectively. Additionally, the 46 items address both positive and negative beliefs and attitudes towards epilepsy [4,29]. Data obtained from the socioeconomic questionnaire was analyzed using descriptive statistics (absolute and relative values) with the JASP software (Version 9.0.1). For the data obtained from part II of the EBAS-Adult Version tool, a structural equation analysis [30] was performed with the Mplus soft ware and divided into two steps: Firstly, a confirmatory factor analysis of the 46 items present in part II of the tool was performed to validate the fit of this theoretical measurement model. For this, the goodness of fit of the 46 items with their neurological, metaphysical and environ mental/psychophysical dimensions was evaluated. Secondly, an esti mation of the structural model was performed, which analyzed the relationship of the 46 items grouped in the three dimensions (neuro logical, metaphysical and environmental/psychophysical) with the variables: sex, religion, educational level. For the parent of a child variable, we considered all participants who reported being parents of a child with or without a diagnosis of epilepsy. For the educational level variable, educational levels adopted in Brazilian education were considered: Incomplete and complete Elementary School; Incomplete and complete High School; Incomplete and complete University Education. In both of the structural equation models, theoretical and structural, the correlation coefficients from all paired combinations of the indicator variables were estimated according to the nature of the variable. The Weighted Least Squares estimation method [31] was used with all models, since it is the most appropriate when using categorical vari ables, which estimated the standardized direct and total effects [32]. The Comparative Fit Index (CFI), which indicates sample quality, the Tucker Lewis Index (TLI), which addresses the items’ number ratio for the sample number, and the RMSEA, which shows the residual value, were used to assess the fit of the model. Thus, to infer the model adjustment validity, an approximate value of 0.80was considered for the CFI and TLI [33], while RMSEA values from 0 to 0.08 were considered an acceptable fit [34]. In this research, the requirements of the Guidelines and Norms of Research Involving Human Beings, regulated by Resolution 466/12 of the National Health Council, were met. The project received an opinion of approval from the Research Ethics Committee, under number 2.895.570 and the Informed Consent Form was signed by the participants.
2. Materials and methods This is a quantitative study. The research was conducted in three FHS units located in the urban area in one city of northeastern Brazil. The participants involved in the research were registered users at the FHS units, who were present and available at the time of data collection at the institution. In addition, the following aspects were also considered as the inclusion criteria in the study: be aged between 18 and 59 years old and have some educational level. Exclusion criteria included: people with allopsychic and autopsychic disorientation; those suffering from psychiatric disorders that may alter their understanding of reality; as well as sedated users, who may expe rience changes, to a greater or lesser extent, in their motor or mental functions. Participants were contacted in the FHS waiting rooms, selecting those who self-reported meeting the inclusion criteria and agreed to participate in the research. The sample calculation was based on struc tural equation modeling techniques. The calculation is based on the maximum permitted levels for type I and type II errors, the acceptable limits for the root mean square error of approximation (RMSEA) (be tween 0.5 and 0.8) and the degrees of freedom of the model [28]. Data collection took place between September and October 2018. To this end, participants individually answered a questionnaire for socio economic characterization. Thereafter, participants were instructed to answer part II of the Brazilian version of The Epilepsy Beliefs and Atti tudes Scale (EBAS) - Adult Version, in order to investigate their beliefs and attitudes towards childhood epilepsy. The tool is divided into: Part I with six questions addressing the participant’s general knowledge and experience with epilepsy; Part II containing a story highlighting the symptoms and behaviors during and after an epileptic seizure in a child, followed by 46 beliefs and attitudes associated with childhood epilepsy [29]. In part II, participants were instructed to read the story and select, from a four-point Likert scale, which of the following response alter natives represented the intensity/degree of their belief for each of the 46 items: (1) I don’t believe it, (2) I believe it a little, (3) I believe it a lot, (4) I completely believe it [29]. The 46 items are divided into three dimensions: neurological, metaphysical and environmental/psychophysical with 13, 7, and 26
3. Results 3.1. Profile of the survey participants As shown in (Table 1), 300 subjects aged between 18 and 59 years old, mostly female (82.7 %), participated in the research. Regarding the marital status of the participants, 51.7 % reported being single. Most participants (42.7 %) had completed high school, 69.3 % claimed to be of the Catholic religion and 66.0 % received up to 1minimumwage in monthly income. Fifty-seven professions were cited, with housekeeper as the most common occupation (28.7 %). 3.2. Validation of the measurement model The general fit index of the model presented excellent values (CFI = 0.90; TLI = 0.91; RMSEA 0.05), indicating data adherence to the theoretical construct evaluated by the EBAS - Adult Version instrument in Portuguese. Fig. 1 shows the factor weightings, where most items were accept able, ranging from 0.32 to 0.78, with some exceptions. The factor weightings ranged from 0.32 to 0.54 in the neurological dimension, except for items 15, 35 and 37, which obtained low factor weightings of 0.10, 0.17 and 0.29, respectively. In the metaphysical dimension, the factor weightings ranged from 0.53 to 0.68, except for item 32, with 54
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religion, educational level, having a relative with epilepsy and being the parent of a child (Fig. 2). Fig. 2 shows that the association results were significant (p < 0.05) for three variables (religion, educational level and being the parent of a child) in different dimensions (neurological, metaphysical and envi ronmental/psychophysical). The variables sex and relatives did not present values considered significant. Having religion positively influenced beliefs and attitudes in the neurological dimension (β: 1,040; p: 0.044). An increase in educational level negatively influenced beliefs and attitudes in the environmental/ psychophysical dimension (β: − 0.723; p: 0.040). Being the parent of a child negatively influenced beliefs and attitudes in the environmental/ psychophysical dimension (β:1,120; p: 0.043), as well as positively influenced beliefs in the metaphysical dimension (β:− 0.244; p: 0.028). It is noteworthy that only one participant was the mother of a child with epilepsy, the other participants reported that their child did not have the disease.
Table 1 Profile of the participants. Crato-CE, Brazil, 2018. Variables
Institution: ESF
Gender Female Male Age Group 18− 25 26− 35 36− 49 50− 59 Marital Status Single Married Stable Union Separate Widow/Widower Educational level Elementary School High School University education Religion Catholic Evangelical Spiritualism Umbanda Jehovah’s Witness No religion Occupation Homemaker Student Teacher Other professions Unemployed Monthly family income < 1 minimum wage 1 - 2 minimum wages 2 - 3 minimum wages > 3 minimum wages Relatives with epilepsy Brother or sister Cousin Nephew or niece Uncle or aunt Mother Husband Father Son Grandson Parent of a child 0− 11 years old
Nº 300
Percentage (%)
248 52
82.7 17.3
81 89 88 42
27.0 29.7 29.3 14.0
155 106 26 6 7
51.7 35.3 8.7 2.0 2.3
66 167 67
22.0 55.7 22.3
208 54 1 2 1 34
69.3 18.0 0.3 0.3 0.7 11.3
86 37 18 150 9
28.7 12.3 6.0 50.0 3.0
198 64 30 8
66.0 21.3 10.0 2.7
16 21 13 10 7 3 2 1 1
5.3 7.0 4.3 3.3 2.3 1.0 0.7 0.3 0.3
120
40.0
4. Discussion The results obtained in this study showed that, in the measurement model validation, most of the 46 items in part II of the Brazilian version of the EBAS - Adult Version presented acceptable factorial weightings, showing good adjustment between the items and their dimensions (neurological, metaphysical and environmental/psychophysical), with general adjustment indices also being excellent, indicating data adher ence to the theoretical construct evaluated by the EBAS. The results also indicate that the measurement model may have an even better fit without items 1, 15, 17, 22, 32, 35, 36 and 37, which obtained low factor weightings. As most of the items presented acceptable factor loadings, demon strating good adjustment in their dimensions, and the general adjust ment indexes were also acceptable, we chose not to exclude from the scale the items that demonstrated low factor loading, because, when they were evaluated from the theoretical point of view, they were valid beliefs and attitudes to be investigated and analyzed: (1)believe that the use of herbs or plants (natural medicine) is the best health care for a child with epilepsy; (15) believe that a doctor is the best person to assist a child with epilepsy; (17) believe that a child with epilepsy can swim when accompanied by the parents; (22) believe that a child with epi lepsy must participate in all physical activities at school; (32) believe that a child has epilepsy because someone put an "evil eye" on his/her mother when she was pregnant; (35) believe that we should call an ambulance when a child has a seizure; (36) believe that the parents of a child with epilepsy continually fear the possibility of their child having a seizure at any time; (37) believe that a genetic defect can cause epilepsy in a child. The structural model analysis also demonstrated acceptable general adjustment rates, reinforcing the reliability of the findings from this study, which evidenced a significant association between beliefs and attitudes towards childhood epilepsy with having a religion, increased educational level and being the parent of a child. Having a religion influenced increased positive beliefs and attitudes pertaining to the neurological dimension of the EBAS-Adult version tool, which are supported by a scientific basis when dealing with the neuro logical and genetic genesis of epilepsy [4,35], and includes believing that a child may have epilepsy because of brain abnormality, brain damage at birth, genetic defects or serious illnesses affecting the brain, as well as having a physician named as the best professional to care for the affected child. It is noteworthy that 88.6 % of participants declared having a reli gion, and the vast majority was Christian (87.3 %),with the findings leading us to infer that the historical belief constructed between re ligions and associated epilepsy, such as the cause of the disease being supernatural (demonic possession) or from higher powers (God’s will) [18,36,37],which require religious practices for a treatment or cure [18,
Source: Search Data, 2018.
0.03. In the environmental/psychophysical dimension, factor weight ings ranged from 0.33 to 0.78, except for items 1, 17, 22 and 36, which obtained low factor weightings of 0.23, 0.05, 0.04 and 0.20, respectively. Since most items obtained acceptable factor weightings, presented a good adjustment for their dimensions and the overall adjustment indices were also excellent, items presenting unacceptable results were not excluded from the scale as they were considered valid from a theoretical viewpoint. Thus, there were no changes in the tool, keeping the causal structural equation analysis of all EBAS - Adult Version items in Portu guese the same. 3.3. Structural model: validation and association between variables In the structural model validation, the analysis indicated that the CFI/TLI/RMSEA general adjustment indices were acceptable, with values of 0.90, 0.91, 0.04, respectively, thus ensuring the reliability of this model, which includes the association of the 46 items distributed across the three dimensions (neurological, metaphysical and environ mental/ psychophysical) from Part II of the tool with the variables: sex, 55
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Fig. 1. Measurement model from part II of the Brazilian version of the EBAS - Adult Version. Source: Search Data, 2018.Caption: q: question; amb/pis: environmental/psychophysical; met: metaphysical; neu: neurological.
Fig. 2. Structural model from part II of the Brazilian version of the EBAS -Adult Version. Source:Search Data, 2018.Caption: q: question; amb/pis: environ mental/psychophysical; met: metaphysical; neu: neurological; filho: parent of a child.; sco: educational level; rel: religion; par: having a relative with epilepsy and; sex: gender.
37,19], did not prevail. Having a religion in this study influenced the positive belief that epilepsy is a neurological disease, caused by a factor that affects the brain (injury, abnormality, genetic alteration or serious illness) and requires medical treatment. These findings corroborate the study by Rafael et al. [6], who investigated the knowledge and attitudes towards epilepsy in France, including 1777 participants from the general population in the sample, where49.2 % reported being Christians, with most participants agreeing that epilepsy is not a supernatural disease, correctly identifying brain injury as one of its possible causes, in addition to recommending a
doctor as the most appropriate to treat a person with epilepsy. However, the results from this study differ from those found in the recent survey by Kiwanuka and Olyet [20], carried out with 220 adults in Uganda. The authors observed that, even with participants being primarily Christian (79.3 %), the majority of the interviewees attributed the cause of epilepsy to supernatural spirits (40.2 %) and 52.1 % preferred traditional medicine or healers as treatment instead of treat ment by a doctor. It is noteworthy that the results found in the present study cannot be generalized for all religions, as there was a predominance of Christianity 56
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in the present sample, while a diversity of religions exist throughout the world, each of which have different norms and doctrines, and their in fluences on beliefs and attitudes towards epilepsy can be investigated in future research. As for educational level, this study showed that an increase in educational level influenced increased negative beliefs and attitudes in the environmental/psychophysical dimension. This dimension ad dresses negative beliefs and attitudes on the occurrence of epileptic seizures due to: sudden changes in weather or lunar phases, playing in the sun for a long time, traveling in vehicles without air circulation, being angry or bored, certain foods/drinks and doing a lot of school work, including thinking that someone can become epileptic by touching the sick child, that the affected child should be kept away from other people and that epileptic seizures can be stopped with water. In addition, this dimension includes believing that the use of natural medicine (use of herbs) is the best treatment for the disease, that the child often has difficulties at school and that parents try to hide the child’s illness from others. This finding was different from other studies that found that the lowest level of school education was associated with a higher proportion of negative beliefs and/or attitudes towards epilepsy [6,7,9–12]. How ever, studies also show that such negative aspects can also be found among people with higher educational levels, including high school and university levels [2,13–17]. In this study, the majority of the sample was comprised of people with a high school level of education, 55.7 %, and 12.3 % with university education level. Based on research findings [13,38], including educational programs on epilepsy for schoolchildren and university students is necessary, as this is a tool significantly associated with increased knowledge and positive attitudes towards the disease. Several studies indicate that a population’s lack of information on epilepsy contributes to the persistence of stigma, beliefs and negative attitudes [2,5,7,39]. However, epilepsy is not a regularly discussed topic at schools in many countries. Thus, many people support erroneous misconceptions about the disease [40]. Therefore, it is likely that there is still a need for a public education approach towards epilepsy in the school and university curriculum of the region where this study was conducted. As such, a participant’s in crease in educational level did not guarantee access to a greater level of epilepsy education in this study, which reinforces the notion that there is little adequate knowledge and, consequently, negative beliefs and attitudes. A study by Murthy et al. [13] indicates that health education actions on epilepsy should be transmitted at all school levels to increase knowledge. The authors clearly show that, if knowledge about epilepsy increases, people will have positive attitudes and good practices, while a lack of knowledge leads to negative attitudes and practices. Educational strategies aimed at training and raising awareness of epilepsy for students and teachers are important [2,7,13,14,16,38,40]. This education needs to address information on the cause, treatment and transmission of the disease, as well as involve guidance on the man agement of epilepsy in everyday life, clarifying existing prejudices and fear [41,42]. In this study, being the parent of a child influenced increased negative beliefs and attitudes within the environmental/psychophysical dimension, such as believing a child may have epileptic seizures due to: being angry or bored, playing in the sun for a prolonged time, sudden changes in weather (becoming very hot/cold/humid/rainy), certain foods/drinks, changes in lunar phases or traveling in vehicles without air circulation, in addition to believing that epileptic seizures can cease with a glass of water, or that epilepsy can be contagious and parents try to hide that their children have epilepsy. Being the parent of a child also influenced positive beliefs in the metaphysical dimension such as believing that faith in a higher power helps coping with epilepsy. In this study, most parents did not have a child with epilepsy; however, the fact that they were the mother or father of a child possibly
aroused affection for other children with epilepsy, generating positive and negative beliefs, since, according Wright et al. [43], beliefs comprise three components: cognitive, affective and behavioral; with the affective component being responsible for instigating the occurrence of favorable or unfavorable feelings towards an object, event or behavior. We also observed in this study that parents of children believed that several factors could cause epileptic seizures. This may be because parents’ fears and concerns about a child’s epilepsy may motivate the adoption of overprotection, which can reinforce negative beliefs and attitudes towards the disease, this being a natural reaction to wanting to protect the child, where they end up assuming defensive behaviors such as restricting the children from partaking in several activities to avoid epileptic crises since they believe that any activity can precipitate a crisis [21,44–49]. Parents’ misinformation on childhood epilepsy may act as an epicenter of overprotection, inappropriate knowledge and negative practices [24,45,46]. Thus, parents’ misinformation in this study may have been a fundamental reason for negative beliefs and attitudes to wards epilepsy, which reinforces the need to improve the degree of parental knowledge on the cause and management of epilepsy, as well as allow them to communicate their fears, doubts and beliefs [21,24,45, 46]. It is noteworthy that the present study used a specific population in the Northeast region of Brazil and cannot be generalized for the whole country. Never the less, it is worth considering that this population re sides in a Brazilian region with development characteristics common in emerging countries, and, thus, may have implications for the under standing of aspects that influence childhood epilepsy in those regions. In this sense, it is important to highlight the relevance of studies from different locations, as the way epilepsy is viewed involves the perpetu ation of beliefs and attitudes, as well as sociocultural conjunctures from each society [14,50]. Gajjar [35] conducted a study focusing on the beliefs and attitudes towards epilepsy in children, which indicated the cultural characteris tics of a group, personal experiences with epilepsy, exposure to accul turation and/or interactions with different cultures as fundamental factors in the construction of different beliefs surrounding childhood epilepsy. Bartolini, Bell and Sander [51] also devoted themselves to reviewing multicultural challenges in epilepsy, aiming to raise aware ness to the importance of sociocultural knowledge. Therefore, the living context of the target population of this study needs to be considered. We noticed that the beliefs and attitudes towards childhood epilepsy were influenced by having a religion, an increase in educational level and being the parent of a child. The study also showed that negative beliefs and attitudes persist among FHS unit users, and we suggest that health professionals working in those services develop health education actions to improve knowledge on the cause, treatment and transmission of epilepsy. The nurse’s role is highlighted as an active agent in health educational activities at FSH units, where they are able to conduct approaches focused on epilepsy, involving parents of chil dren in the FHS scenario, students and teachers in the school environ ment or other community settings. In addition, the development of educational campaigns for the community and even training and awareness actions for health pro fessionals themselves is essential, so that they can pass on to the popu lation the correct information and demystify associated negative beliefs and attitudes towards epilepsy [8,10,13,16,21,24]. It is very important to clarify negative beliefs and attitudes mainly about the occurrence of epileptic seizures in the child resulting from sudden changes in weather (becoming very hot/cold/humid/rainy) or lunar phases, playing in the sun for a long time, being angry or bored, traveling in vehicles without air circulation, certain foods/drinks and doing a lot of schoolwork, in addition to beliefs that someone can become epileptic by touching the sick child, that the affected child should be kept away from other people, that epileptic seizures can be stopped with water and trying to hide from others that the child has 57
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epilepsy. Efforts to increase the knowledge of the community on epilepsy can improve the quality of life of affected children, since it has the possibility of minimizing misunderstandings that support the stigmatization of those children in the society where they live.
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5. Conclusions The findings of this study emphasize that having a religion, an increased educational level and being the parent of a child were factors influencing the beliefs and attitudes of the target population regarding childhood epilepsy. It is noteworthy that the present research was limited to only approaching users at FHS units in an urban area, other limitations were that, upon evaluating whether or not the patients met the research in clusion criteria, most participants had a religion and were female, and few participants had a family member or a child with epilepsy. However, given the scope of the addressed theme, further research is needed to encompass individuals from different contexts, identifying other vari ables capable of influencing the dissemination of negative beliefs and attitudes towards the disease and how healthcare professionals may develop and disseminate successful healthcare educational strategies within healthcare education for epilepsy care. Declaration of Competing Interest The authors declare no conflict of interest. Acknowledgments We thank the nursing staff and the administrative agents working in the FHS for the welcome and necessary support. References [1] Brasil. Minist´erio da Saúde. Portaria nº 1.319, de 25 novembro de. Aprova o ProtocoloClínico e DiretrizesTerapˆ euticas da Epilepsia. Available at: http://bvsms. saude.gov.br/bvs/saudelegis/sas/2013/prt1319_25_11_2013.html. (Accessed: Mar 30, 2018). 2013. [2] Zanni KP, Matsukura TS, Maia Filho HS. Beliefs and attitudes about childhood epilepsy among school teachers in two cities of southeast Brazil. Epilepsy Res Treat 2012;1:1–13. [3] Hopker CC, Berberian AP, Massi G, Willig MH, Tonocchi R. A pessoa com epilepsia: percepç˜ oesacerca da doença e implicaç˜ oesnaqualidade de vida. CoDAS 2017;29: 1–8. [4] Zanni KP. Adaptaç˜ ao transcultural do instrumento The Epilepsy Beliefs and Atitudes Scale: Estudocomparativo entre pais e professores. S˜ ao Carlos: Dissertaç˜ ao do MestradoemEducaç˜ ao Especial, Universidade Federal de S˜ ao Carlos; 2010. [5] Silva CRA, Cardoso ISZO, Machado NR. Consideraç˜ oessobreepilepsia. Bol Científ Pediatr 2013;2:71–6. [6] Rafael F, Dubreuil CM, Burbaud F. Knowledge of epilepsy in the general population based on two French cities: implications for stigma. Epilepsy Behav 2010;17:82–6. [7] Spatt J, Bauer G, Baumgartner C, Feucht M, Graf M, Mamoli B, et al. Predictors for negative attitudes toward subjects with epilepsy: a representative survey in the general public in Austria. Epilepsia 2005;46:736–42. [8] Saengsuwan J, Boonyaleepan S, Srijakkot J, Sawanyawisuth K. Public perception of epilepsy: a survey from the rural population. J Neurosci Behav Health 2009;1: 6–11. [9] Caveness W, Gallup G. A survey of public attitudes towardsepilepsy in 1979, with an indication of trends over the past 30 years. Epilepsia 1980;21:509–18. [10] Jensen R, Dam M. Public attitudes towards epilepsy in Denmark. Epilepsia 1992; 33:459–63. [11] Novot´ na I, Rektor I. The trend in public attitudes in the Czech republic towards persons with epilepsy. Eur J Neurol 2002;9:535–40. [12] Saengpattrachai M, Srinualta D, Lorlertratna N, Pradermduzzadeeporn E, Poonpol F. Public familiarity with, knowledge of, and predictors of negative attitudes toward epilepsy in Thailand. Epilepsy Behav 2010;17:497–505. [13] Murthy MKS, Govindappa L, Marimuthu P, Dasgupta M. Exploring knowledge, attitude, and practices in relation to epilepsy among undergraduates for effective health promotion: initial evaluation. J Educ Health Promot 2019;8:122–30. [14] Thapa L, Bhandari TR, Shrestha S, Poudel RS. Knowledge, beliefs, and practices on epilepsy among high school students of Central Nepal. Epilepsy Res Treat 2017: 1–7.
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