Prevalence and Associated Factors of Mental Distress among Caregivers of Patients with Epilepsy in Ethiopia: A Cross-Sectional Study Design

Background
Caregiving to individuals with mental illness is a broad responsibility, including not only practical help and care but also emotional support. Cross-sectional studies in different localities suggested a significant burden of mental distress among caregivers of patients with epilepsy, but we are not aware about the condition in Ethiopia. Therefore, the aim of the current study is to assess the prevalence and associated factors of mental distress among caregivers of patients with epilepsy in Ethiopia.


Methods
An institutional based cross-sectional study was conducted in Neuropsychiatric Department of Amanuel Mental Specialized Hospital, Addis Ababa, Ethiopia. Using systematic random sampling technique, 409 caregivers participated in the study. Data was collected by face to face interview using standardized and validated Kessler Psychological Distress Scale (K-10) to assess mental distress. Descriptive, bivariate, and multivariate logistic regression models were used for analysis. Adjusted Odd Ratio (AOR) with 95% Confidence Interval (CI) was used to show the odds, and P-value < 0.05 was considered as statistically significant.


Results
The mean age of respondents was 43.3 years with standard deviation of ±11.4 years. Two hundred eighteen (53.3%) of the respondents were male. The prevalence of mental distress was found to be 27.1% with 95% CI [22.6-31.1]. Relationship with patient of being mother [AOR: 5.67, 95% CI: (1.68-13.70)], father [AOR: 4.42, 95% CI: (1.25-12.58)], wife/husband [AOR: 10.59, 95% CI: (2.43-14.19)], and child [AOR: 5.37, 95% CI: (1.27-12.69)]; caring for young person below 20 years of age [AOR: 4.00, 95% CI: (1.43-11.21)]; poor social support [AOR: 7.26, 95% CI: (3.60-14.65)]); and experienced stigma [AOR: 3.03, 95% CI: (1.63-5.66)] were statistically and significantly associated factors of mental distress among caregivers of patients with epilepsy.


Conclusion and Recommendation
We found a lower prevalence of mental distress among caregivers of patients with epilepsy compared to other low- and middle-income settings. Being caring for young patients, being parents to the patient, poor social support, and stigma were statistically significant associated factors of mental distress among caregivers. Therefore, appropriate psychosocial interventions are warranted to be designed and implemented emphasizing the aforementioned associated factors.

2 Psychiatry Journal and insomnia arising from providing care for the person in problem [1,7].
Caregiving is a time-consuming responsibility, creating social, emotional, behavioral, and financial problems for the caregivers and causes various limitations on their personal life. Caregivers within the family have often been described as forgotten patients. Caregivers experience psychological distress including mood swing, fatigue, headaches, joint and muscle pains, and marital and family conflicts [1,3,4].
Cross-sectional studies suggested that caregivers of patients with epilepsy experience considerable emotional distress [1,8,9]. Caregivers who experience high burden are at risk of developing clinical disorders including depression and anxiety [10].
Epilepsy is the most common chronic neurological disorder characterized by recurrent or multiple seizures [11,12]. It accounts for 1% of the global burden of disease and affects over 65 million people worldwide. The World Health Organization also estimates that 80% of people with epilepsy live in low-and middle-income countries [12]. The incidence and prevalence of epilepsy are thought to be higher in low-or middle-income countries than in high-income countries. About 3-4 million Africans suffer from epilepsy where treatment gap is estimated to be 80% [1,11].
A range of factors such as giving care for younger patients, being unemployment, staying longer duration of illness, living in rural area, having family history of epilepsy, having low social support, and experiencing stigma were factors associated with mental distress in caregivers of patients with epilepsy [10,[13][14][15][16]. Similar studies also showed that epilepsy is associated with stigma both to the patient with epilepsy as well as the patients' family [17]. Despite being aware about the situation of mental distress among caregivers of patients with epilepsy in different settings, unfortunately we do not know about the psychological burden of epileptic caregivers in relation to their caregiving role in Ethiopia. Therefore, this study aims to determine prevalence and factors associated with mental distress among caregivers of patients with epilepsy at Amanuel Mental Specialized Hospital, Addis Ababa, Ethiopia.

Inclusion and Exclusion Criteria
Caregivers who were 18 years old and above and who had been providing care for more than 6 months for patients diagnosed with epilepsy were included in the study.
Caregivers who have no direct involvement in providing care, those with history of known psychiatric disorder before being a caregiver, and those who are unable to hear or speak were excluded from the study.

Sample
Size and Sampling Procedure 2.5.1. Sample Size. The sample size was determined by using single population proportion formula considering the following assumptions, 95% of confidence interval. There was no local or national data on the prevalence of emotional distress among caregivers of patients with epilepsy. Hence prevalence of 50% and marginal error (d) of 5% were used to maximize sample size. for social support were used. The K10 is a widely used tool to assess mental distress in the preceding one month [18]. Both the 10-item and 6-item versions (K10 and K6) were validated in Ethiopia, with the 10-item version showing superior validity [19] and used in various studies [19,20]. Each item is rated from 1 to 5, from "none at all" to "all the time". The total score for the 10-item scale is 50, ranging from 10 to 50. Respondents were asked about experiencing symptoms of mental distress over the past 1 month. In this study, a study respondent who scored 20 and above was considered as having mental distress. It has been investigated and confirmed that K10 scale had excellent internal consistency reliability, Cronbach's alpha of 0.93 [18]. The stigma experience scale is a frequency scale based on seven items helping to assess their experience of stigma. From the seven items of stigma experience scale the family version, the first four items were scored on a 5-point scale, that is, "never", "rarely", "sometimes", "often", and "always". The remaining three items scored using the response categories (yes, no, unsure). Values are then summed across the seven items. Therefore, using mean score as cut of point (score 18), respondents with score 18 and above were considered as experiencing stigma and those with scores less than 18 considered not stigmatized. The coefficient of reliability for this scale was good (0.76); this proves that the scale achieved an acceptable level of internal consistency [21].
Oslo three-item social support scale (OSS-3) provides a brief measure of social support and functioning. In order to score OSS-3, total scores are calculated by adding up the raw scores for each item. The sum of the raw scores has a range from 3 to 14. A score ranging from 3 to 8 is classified as poor social support, 9-11 considered intermediate social support, and a score of 12 to 14 considered as having strong social support. The internal consistency of OSS-3 was reported with a Cronbach's alpha coefficient of 0.50. The relative low Cronbach's alpha does not necessarily reflect a low reliability but a demonstration of OSS-3 multidimensionality. Therefore, the OSS-3 was found to be a potential measuring scale useful in determining range of social support [22].

Data Collectors. Data collection was administered by two
BSc psychiatry nurses and one clinical nurse and supervised by one Master's degree psychiatry professional.

Data Quality Control.
Pretest was done among 22 of the respondents at Black Lion Hospital in the Neurology Department that has been providing patients with epilepsy follow-up services five days before the actual data collection time to check for the understandability and reliability of the questionnaires. Two-day training on the questionnaire and ethical issues was given for the supervisor and data collectors. Principal investigator closely supervised the data collection process and made spot-checking and reviewing of the completed questionnaires on daily bases to ensure completeness and consistency of the information collected.

Data
Processing and Analysis. The data was entered and cleaned with EpiData 3.1 and analyzed using SPSS version 20. Descriptive statistics were used to summarize the data. Binary logistic regression and multivariate models were implemented to investigate factors associated with mental distress. The strength of association was presented by odds ratio with 95% confidence interval (CI). P-value less than 0.05 was considered as statically significant criterion.

Ethical Consideration.
Ethical clearance was obtained from Ethical Review Committee of AMSH and UoG. The purpose of the study was explained to each participant before their participation. Formal permission letters were taken from the administrative department of the hospital, and written consent was taken from the participants' for their voluntary participation. Confidentiality is maintained by omitting personal identification.

Results
A total of 409 caregivers participated in the study with a response rate of 96.7%.

Sociodemographic Characteristics
3.1.1. Caregivers. The mean age of respondents was found to be 43.3 ±11.4 (SD) years. Two hundred eighteen (53.3%) of the respondents were male. Two hundred thirty-six (57.7%) of the respondents were orthodox by religion, one hundred fiftyseven (38.4%) were Amhara followed by Oromo 139 (34.0%) by ethnicity, 96 (23.5%) were mother of the patient, and 376 (91.9%) of the respondents live with the patient (Table 1).

Patients.
The median age of the patients was found to be 27 years with interquartile range of 18. The minimum and maximum age was 13 and 80 years, respectively. Two hundred eighteen (53.3%) of patients were male (Table 1).

Patients.
One hundred fifty-eight (38.6%) patients had less than 5-year duration of illness, and 107 (26.2%) had 5 to 10 years of duration. Two hundred eighteen (53.3%) patients had no experience of seizure in the past three months and only 62 (15.2%) patients had known comorbid illness (Table 2).

Behavioral Variables.
Regarding current substance use, majority of caregivers and most patients, that is, 320 (78.2%) and 383 (93.6%), respectively, had no history of substance use (Table 3).

Psychosocial Variables.
This study showed that 153 (37.4%) of the caregivers had poor social support. The sevenitem stigma experience scale measurement revealed that 79 (19.3%) caregivers had experienced stigma (Table 3).

Prevalence of Mental Distress among Caregivers.
The overall prevalence of mental distress among caregivers of patients with epilepsy was 27.1%. Among caregivers with mental distress, 65 (58.6%) were females (Figure 1).

Bivariate Analysis.
In the bivariate analysis variables including age, sex, employment, and marital status of the caregivers, relationship with patient, living with patient, social support, and stigma had fulfilled the minimum requirement of p value less than 0.2. Similarly, age, seizure experience, and comorbid medical illness of the patients were found with p value less than 0.2. Therefore, these variables were further entered and analyzed using multivariate analysis.

Multivariate Analysis.
In the multivariate analysis variables including age of the patient below 20 years old, relationship with patient (being wife or husband, mother, father, and child), poor social support, and stigma were significantly associated with mental distress among caregivers of patients with epilepsy.
Caring of young patients below 20 years of age was found significantly associated with mental distress among caregivers of patients with epilepsy. Caring of young patients below 20 years of age was about 4 times more likely distressing  Social support was also found significantly associated with mental distress among caregivers of patients with epilepsy. Caregivers with reported poor social support were about 7 times more likely distressed compared to those with strong social support [AOR: 7.26, 95% CI: (3.60-14.65)].
Experienced stigma among caregivers of patients with epilepsy was also found significantly associated with mental distress. Caregivers with reported experienced stigma were about 3 times more likely distressed compared to caregivers not stigmatized [AOR: 3.03, 95% CI: (1.63-5.66)] (Table 4).
Methodological difference, especially the sensitivity difference of the different screening tools and difference in clinical and other psychosocial factors, of the study participants could be responsible for the discrepancies of the findings. Few of the studies used Burden Assessment Scale and Hospital Anxiety-Depression Scale (HADS) to measure different constructs of mental distress [1,3,10]. The prevalence of mental distress in this study is also lower than studies done among caregivers of patients with severe mental illness in general (56.67%) and schizophrenia (48%) in particular in Ethiopia [25,26]. This could be due to the difference in the challenge of giving care for different mental disorders. In addition, we used Kessler Psychological Distress Scale (K10) where the others used Self-Reported Questionnaire (SRQ 20) for screening.
Lower levels of anxiety among caregivers of younger disable people were also observed in another study. A study Psychiatry Journal 7 conducted in Italy on 342 workers of a cooperative for in-house, outpatient, and scholar social care also showed that those who were working with younger disabled people had lower levels of job stress than those caring for older people. In this study, the symptoms from the low back were significantly related to psychological demands and depression score; symptoms from the upper back were related to age, anxiety, and depression; symptoms from the neck were related to psychological demands, authority over decisions, gender, and anxiety [31].
This finding is also consistent with other studies conducted among caregivers in Ethiopia and India [14,16,25]. A study done among caregivers of patients with schizophrenia in India showed that social support has been shown to serve as a buffer against the negative effects that are associated with family caregiving [14]. Stigma was also another significant associated factor. Caregivers involved in this study were found 3 times more likely to be distressed [AOR: 3.03, 95% CI: (1.63-5.66)] compared to those not stigmatized, which is similar to other mental disorders and settings [25,[32][33][34].
This study indicated that variables such as age, sex, marital status, unemployment, use of substance, living with patient, residence, and known medical illness of the caregivers were not associated with mental distress. Similarly, comorbid medical condition, duration of illness, substance use, and seizure experience of the patient had no association with mental distress. The major limitations of the current study were as follows: The temporal relationship between risk factors might not be addressed since we employ a crosssectional research design. Recall bias among respondents may also over-or underestimate the result.

Conclusion
In this study prevalence of mental distress among caregivers of patients with epilepsy was found to be lower than existing studies in different settings. Relationship with the patient (being wife or husband, mother, father, and child), caring of young patients below 20 years old, poor social support, and stigma were found to be significantly associated with mental distress among caregivers of patients with epilepsy. Therefore, appropriate psychosocial interventions are warranted to be designed and implemented emphasizing the aforementioned associated factors.