Spirituality/religiosity in a group of people with epilepsy

INTRODUCTION

Epilepsy is one of the most common neurological diseases. It is both a chronic and relapsing disease that is characterised by a persistent predisposition to generate seizures that are not provoked by any direct damage to the central nervous system or by neurobiological, cognitive, psychological, or social factors [1, 2]. The disease affects people all over the world, regardless of gender or age [3]. It is estimated that nearly 70 million people suffer from epilepsy, which constitutes approximately 1% of the world’s population [1, 4]. In Europe alone, this number reaches approximately 7 mil-lion people, while in Poland the number of people suffering from it is over 400,000. Epilepsy affects many areas of life, including physical, mental, spiritual, social, family, financial, and professional spheres [1].
Currently, thanks to progress in epileptology, a slow change in the image of the patient in society is being observed. The role of nursing staff is extremely important here [5]. According to the American Holistic Nurses Association, the primary goal of nursing care is the practice of healing the whole person. Holistic nursing, responsible for a unique contribution to the health and recovery process of patients, also includes the concept of spirituality [6]. Despite the increased interest in the issue of spirituality in medicine, there are still many gaps, and defining the concepts itself causes difficulties. Spirituality covers one’s attitude to the sacred, unlike religion, which is characterised by specific beliefs and adherence to specific practices. Nevertheless, both concepts are difficult to distinguish and are often not distinguished in research [6]. Moreover, the difficulty in defining the terms spirituality or religion means that many health care professionals do not discuss these issues with their patients. The lack of understanding and information in this area may, in turn, lead to the creation of barriers in the provision of multidimensional care [5].
Regarding the impact of spirituality/religiosity on human functioning in chronic disease, scientific evidence is contradictory. On the one hand, there are several publications confirming the additive influence of faith and spirituality in coping with life crises and diseases [7, 8]. For people suffering from epilepsy, religion can be a source of optimism and hope, giving meaning to situations in life and improve self-esteem [9]. On the other hand, the moment of the onset of a chronic disease may constitute a crisis during which the sick shift the responsibility and the solution of their health problems to “God”. Additionally, there may be a complete loss of faith and abandonment of religious practices [10].
The main aim was to examine whether selected sociodemographic variables (age of the respondents) and medical variables (frequency, quality of symptoms, method of treatment) are related to the level of spirituality/religiosity in the group of people with epilepsy. We assumed that the more scared the patient, the higher the level of spirituality. However, the longer the illness lasts, the lower the level of spirituality. Moreover, greater severity of the disease (number and quality of symptoms) and systematic treatment in the form of antiepileptic drugs will be associated with a lower level of spirituality. In terms of symptoms, a higher degree of spirituality will be associated with experiencing supernatural experiences (out-of-body sensations). Determining this impact can be used to increase the awareness of medical staff about the essence of patient care, taking into account the aspect of spirituality/religiosity, allowing the provision of individualised, professional, holistic care.

MATERIAL AND METHODS

The study was cross-sectional. To verify the hypotheses formulated in the study, the research was carried out using the following research methods: diagnostic survey and estimation. A survey technique was used to collect research material, which involved asking questions to respondents. The second research technique used was the scaling technique, which allows the assessment of a group of respondents based on specific behavioural characteristics, using a multi-level scale [11].
The study was conducted on a group of 105 people from 1/7/2023 to 22/08/2023 on social networking sites that constitute a support group for patients with epilepsy. Finally, data from 103 respondents were used for analysis. The online post contained a link to the survey posted on an online platform (Google Forms). Inclusion criteria for the study: people over 18 years of age, suffering from epilepsy according to the ILAE criteria (people who have had an epileptic seizure in the last 10 years and who are/have been using treatment in the last 5 years), people with clinically diagnosed epilepsy, and expressing informed and voluntary consent to participate in the study. Exclusion criteria from the study were as follows: minors, people who, according to the ILAE definition, are considered cured of epilepsy (no seizure within 10 years, with no medication intake for the last 5 years), people with a clinically unconfirmed diagnosis of epilepsy, and no consent and voluntary consent to participate in the study. Professing a specific religion/declaring oneself as a non-believer was not an exclusion criterion from the research.
The level of spirituality/religiosity of the surveyed people was assessed using the Daily Spiritual Experience Scale (DSES) by L.G. Underwood. The author of the Polish version of the scale is M. Wnuk from the Medical University in Poznań. The tool consists of 16 questions. For each of the questions from 1 to 15, six answer options were available, based on a Likert scale. The last, 16th question concerned how close the respondent felt to God in general. The minimum number of points that can be obtained is 17, and the maximum score is 96 points. The higher the number of points obtained, the higher the level of religiosity/spirituality of a given person/group under study. Due to the universality of the questions included in the DSES scale, respondents could be both people who considered themselves deeply religious/spiritual and those who do not practice any religion/consider themselves as having a low level of spirituality. The reliability of the DSES scale measured by Cronbach’s  was 0.97 (based on the results obtained in our own study) [12-14].
The original survey questionnaire, containing 11 questions, enabled the collection of selected sociodemographic and medical data.

ETHICAL REQUIREMENTS

Before starting the research, consent was obtained from the Bioethics Committee of the Jagiellonian University (KBET/1072.6120.222.2020). The study was designed, conducted, and its results developed in accordance with the principles of Good Scientific Practice and the Declaration of Helsinki.

STATISTICAL ANALYSIS

In the case of qualitative variables, the number and percentage of responses were indicated. Quantitative variables were described using the following statistics: mean, median, standard deviation, and minimum and maximum values. The following statistical tests were used for statistical analysis: Spearman’s rank correlation coefficient and the Mann-Whitney U test. The significance level was α = 0.05. The analysis of the results was carried out using Statistica 14 soft-ware.

RESULTS

The study analysed data from 103 people (N = 103), of whom 48.54% were men (n = 50) and 51.46% (n = 53) were women. The average age of the respondents was 39.24 years. Most respondents lived in rural areas (26.21% [n = 27]) and in cities with up to 50,000 inhabitants (n = 27). Less than half, i.e. 41.75% of the respondents (n = 43), were married. Approximately 44.66% of respondents declared having higher education (n = 46). Sixty-one people (n = 61) were professionally active, which constituted 59.22% of respondents.
The age at which epilepsy was diagnosed in the study group was very diverse: from 3 months to 68 years. The me-dian age at diagnosis of epilepsy was 20.46 years. Every third respondent declared that they had an epileptic seizure once every few months (n = 30; 29.12%).
In terms of the type of treatment used, the largest percentage of respondents (94.17% [n = 97]) indicated antiepileptic drugs. Epileptic seizures most often manifested as generalised convulsions with loss of consciousness (n = 37, 35.92%). Detailed results regarding the type of treatment administered/applied and symptoms occurring during the attack are presented in Table 1.
The average level of spirituality/religiosity of the respondents is slightly above the middle value for the DSES scale (M = 59.19). The results ranged from 17 to 91 points. The skewness value (SKE = 0.16) close to zero means that there are a comparable number of low and high results in the study group. A negative value of kurtosis (K = –1.34) means that there are a relatively high number of low and high results in the group compared to average results (Table 2).
The correlations between the level of spirituality/religiosity and the age of the respondents, age of diagnosis, the number of seizures, and the frequency of attacks were tasted. Statistically significant correlations were observed for age (rho = 0.34, p < 0.001), number of symptoms (rho = –0.24, p < 0.05), and frequency of attacks (rho = –0.24, p < 0.05). These results mean that the older the subjects, the higher their spirituality/religiosity, and the greater the number of symptoms and the frequency of attacks, the lower their spirituality/religiosity (Table 3).
Because most people used more than one type of treatment and experienced more than one symptom, a separate comparison was made for each treatment type and symptom. In this way, people using a given type of treatment were compared to people not using it, and people experiencing a given symptom to people not experiencing it. The comparison results are presented in Table 4.
The Mann-Whitney U test showed statistically significant differences in the case of surgical treatment (Z = –2.23, p < 0.05) and antiepileptic drugs (Z = –2.23, p < 0.05). It was observed that people who did not use surgical treatment manifested a lower level of spirituality/religiosity than people who used it, and people who do not use antiepileptic drugs show a higher level of spirituality/religiosity than people who use them. A marginally significant difference was observed due to the use of the ketogenic diet (Z = 1.95, p = 0.051).
In the case of experienced symptoms, a statistically significant difference was observed due to the appearance of strange feelings, e.g. the feeling of being outside one’s own body or the impression of distortion of surrounding objects (Z = –2.92, p < 0.01). People who did not experience these symptoms were characterised by a higher level of spirituality/religiosity than people experiencing these symptoms (Table 4).

DISCUSSION

The respondents had varying levels of spirituality/religiosity – the study group of patients included relatively high numbers of people with low and high levels of spirituality/religiosity and relatively few people with an average level of spirituality/religiosity. This result correlates with research conducted by Rigon et al., in which no statistically significant differences were observed between the spirituality/religiosity of people with epilepsy and the control group [15]. Different results are presented by Tedrus et al., for whom patients with epilepsy showed significantly higher levels of religiosity internally (related to personal beliefs and beliefs) and outside the organised religious system (related to private religious practices, such as prayer, meditation, or reading religious texts). Tedrus et al. suggest that this may be related to the predominance of excitatory synapses over inhibitory synapses in the brain, caused by a stronger/incorrect rearrangement of the neuronal network, leading to the individual feeling a higher sense of spirituality and religiosity [16]. The neurological basis probably plays a dominant role, but psychological and social factors should also be taken into account.
In our study, we demonstrated the existence of a relationship between the age of the surveyed people and their level of spirituality/religiosity – older people had a higher level. Similar results were obtained by Rigon et al. [15]. This relationship suggests that spirituality increases as a person matures, perhaps as an individual’s way of coping with the awareness of his or her own mortality [17]. In our study, higher frequency and number of epileptic seizures were associated with lower spirituality/religiosity. This contrasts with the results obtained by Tedrus et al. The researchers did not observe a statistically significant relationship between the type of epileptic seizures (also understood as experienced symptoms) or the frequency of seizures on the spirituality of the subjects. However, it should be borne in mind that the authors used the SSRS scale (Spirituality Self-Rating Scale), and the study was conducted on the Brazilian population [18]. Other studies, also conducted by Tedrus et al., showed that people who experienced epileptic seizures more often, as well as those whose epilepsy occurred at an early age, more often presented a negative way of spiritually/religiously coping with the disease. One possible explanation is that people affected by this disease assume that epilepsy is some-thing sinister, resulting from leading an evil/sinful life, and that they treat the disease as a kind of punishment for their sins [10].
In our own study, a statistically significant relationship was observed between the type of treatment used and the level of spirituality/religiosity of the examined people with epilepsy. People using surgical treatment demonstrated a higher level of spirituality/religiosity compared to respondents who did not receive this form of antiepileptic treatment. No research results were found that would refer to the relationship we examined. However, it should be remembered that people who cannot be controlled by pharmacotherapy are qualified for surgery [3]. A higher level of spirituality/religiosity may be related to the patient’s attempt to adapt to the situation of failure in pharmacological treatment of seizures or the desire to regain control in some aspects of his life. Spiritual well-being is one of the important factors influencing the patient’s acceptance and adaptation to a chronic disease; hence, such people may demonstrate a higher level of positive religious coping [19]. The conducted research procedure showed that people not taking antiepileptic drugs had a higher level of spirituality/religiosity compared to respondents declaring they were taking them. According to Lin et al., some people who are described as pious may, due to religious beliefs, want to keep their bodies “clean” and free from drugs [20]. Meanwhile, in our own study, patients were not asked about the specific religion, faith, or beliefs they profess. In some religions, such as Islam, illness may also be treated as a person’s destiny and, therefore, as some-thing that cannot be changed. At the same time, researchers suggest a relationship between a person’s level of religiosity and his or her religious coping strategies. According to their assumptions, people with higher religiosity may be more likely to use positive forms of religious coping, which influence the individual’s compliance with medical recommendations, including taking medications [20]. However, it should be noted that the number of individual groups in our study was small, which may mean that the results obtained are unreliable. A significant difference at the trend level was also observed due to the use of the ketogenic diet. This result, which was close to statistical significance, allows us to assume that people who did not follow a carbohydrate-restricted diet demonstrated a higher level of spirituality/religiosity. No statistically significant difference was observed due to the use of medical marijuana, but this group was definitely too small to consider the result as reliable. Researched people with epilepsy who experienced strange sensations described by them as a feeling of being outside their own body or a feeling of distortion of surrounding objects were characterised by a statistically significant lower level of spirituality. Our hypothesis was therefore not confirmed. In the case of other symptoms, no statistically significant differences were observed. Devinsky and Lai present different results in their article. According to them, observations made over the last 150 years among epilepsy patients confirm the relationship between religious experiences during attacks (paroxysmal), between seizures (interictal), and after the seizure (postictal). The authors tend to believe that epileptic seizures may increase, decrease, or change religious experiences. Patients described, among others: the impression of the presence of God, the feeling of connection with infinity, hallucinations and hearing the voice of God, seeing saints, clairvoyance, or telepathy. This was especially true for temporal lobe epilepsy, in which there is a noticeably higher percentage of patients reporting post-ictal religious experiences (1.3% of all patients with epilepsy and 2.2% of patients with temporal lobe epilepsy), which may affect the patient’s level of spirituality/religiosity. However, it should be remembered that the present study did not examine the relationship between a specific type of epilepsy and the level of spirituality/religiosity; hence, discrepancies in the results are possible. More-over, out-of-body sensations, described in the literature as one of the symptoms appearing during an attack, may also be experienced by healthy people, e.g. as a result of fatigue, which allows us to assume that there is no direct connection between the spirituality/religiosity of a given individual and the sensations he or she experiences [21].The impact of spirituality/religiosity on sick people, including chronically ill people, is confirmed by many scientific studies. Despite this, there is still insufficient knowledge on this topic. The available material is very limited, which is caused, among other things, by the difficulty in understanding and defining concepts. Despite this, the need for further exploration of this issue is undeniable. Nurses are obliged to provide holistic care, which also takes into account the patient’s spiritual needs. In the opinion of the research staff, the undoubted advantage of the study was the exploration of a topic that is still relatively poorly understood and discussed in the scientific literature.
The article has several limitations. Our own research was conducted on a relatively small number of respondents (convenient, non-representative sample). The presented study did not examine the relationship between the type of epilepsy and the level of spirituality/religiosity. In addition, respondents provided answers online. Only people with the link and access to the Internet had access to the survey. The small number of respondents in particular issues (e.g. level of spirituality/religiosity in patients using medical marijuana) makes it impossible to generalise the results to the population of people with epilepsy. Additionally, not every result obtained in a statistical analysis should be treated as a cause-and-effect relationship. There are several confounding factors – in the case of the study, it included, among others, small numbers in the individual subgroups compared. It is recommended that the research be repeated on a larger sample.

CONCLUSIONS

The group of epilepsy patients included a relatively high number of people with a low and high level of spirituality, and a small number of people with an average level of religiosity. The lower level of spirituality of the respondents was related to the greater severity of the disease (more frequent attacks and a greater number of symptoms experienced) or the lack of surgical treatment. In turn, a higher level of spirituality was noted in the absence of taking antiepileptic drugs and in the absence of metaphysical feelings during a seizure.

Disclosures

This research received no external funding.
This study was approved by the Bioethics Committee of the Jagiellonian University Medical College (Approval No. KBET/1072.6120.222.2020).
The authors declare no conflict of interest.

References