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Stigma and burden of mental illness and their correlates among family caregivers of mentally ill patients

Stigma and burden of mental illness and their correlates among family caregivers of mentally ill... Background and objectives: Family caregivers play a curial role in supporting and caring for their mentally ill relatives. Their struggle for facing stigma and shouldering caregiving burden is marginalized, undervalued, and invisible to medical services. This study assessed the stigma and burden of mental illnesses, and their correlates among family caregivers of mentally ill patients. Methods: A cross-sectional study design was used to collect data from 425 main family caregivers of mentally ill patients at Assiut University Hospital. A structured interview questionnaire was designed to collect socio- demographic data of both patients and their caregivers. Stigma scale for caregivers of people with mental illness (CPMI) was used to assess the affiliate stigma, while the associative stigma was assessed by the explanatory model interview catalogue stigma scale (EMIC-Stigma scale). The caregivers’ burden was assessed using Zarit burden Interview, and Modified Attitude toward Mental Illness Questionnaire was used to assess caregivers’ knowledge and attitude towards mental illness. Results: Bipolar disorder (48%) and schizophrenia/other related psychotic disorders (42.8%) were the most common mental illnesses among the study patients. The mean scores of CPMI total scale, EMIC-Stigma scale, and Zarit Burden scale were 56.80 ± 7.99, 13.81 ± 5.42, and 55.20 ± 9.82, respectively. The significant correlates for affiliate stigma were being parents of patients (ß = 4.529, p < 0.001), having higher associate stigma (ß = 0.793, p < 0.001), and aggressive behavior of mentally ill patients (ß = 1.343, p = 0.038). The significant correlates for associate stigma of the study caregivers were being caregivers’ relatives other than parents (ß = 1.815, p = 0.006), having high affiliate stigma (ß = 0.431, p < 0.001), having poor knowledge and negative attitude towards mental illness (ß = − 0.158, p = 0.002), and aggressive behavior of mentally ill relatives (ß = 1.332, p = 0.005). The correlates for the high burden were being male (ß = 3.638, p = 0.006), non-educated caregiver (ß = 1.864, p = 0.045), having high affiliate stigma (ß = 0.467, p < 0.001), having high associative stigma (ß = 0.409, p < 0.001), having poor knowledge and negative attitude toward mental illness (ß = − 0.221, p = 0.021), seeking traditional healers and non-psychiatrist’s care from the start (ß = 2.378, p = 0.018), and caring after young mentally ill relatives (ß = − 0.136, p = 0.003). Conclusion: The studied caregivers suffered from stigma and a high level of burden. Psycho-educational programs directed toward family caregivers are highly recommended. Keywords: Stigma, Burden, Mental illness, Family caregivers, Egypt * Correspondence: omnyasayed111@gmail.com Department of Community, Occupational and Environmental Medicine, Faculty of Medicine, Helwan University, Helwan, Egypt Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 2 of 9 1 Introduction 2.3 Study participants Mental illnesses are prevalent worldwide and in The family caregivers of mentally ill patients who ful- Egypt. The global prevalence of common mental dis- filled the following criteria were included in the study: orders is approximately 1 in 5 adults (17.6%) [1]. A recent WHO meta-analysis estimated that the preva- – Caregivers aged ≥ 21 years. lence of mental disorders was 22.1% in emergency – Must be intimately involved in the care of the settings [2]. In Egypt, the National Survey of Mental patient for ≥ 1 year (i.e., looking after the daily Disorders estimated overall prevalence as 16.93% of needs, supervising the medications, bringing the the studied adult population [3]. patient to the hospital, staying with the patient The discrimination and stigma surrounding mental during the inpatient stay, and maintaining liaison illnesses are widespread [4]. Stigma is defined as the with the hospital staff). prejudice, avoidance, rejection, and discrimination di- – Caring for patients who met the principal diagnosis rected at people believed to have an illness, disorder, of any mental disorder according to the Diagnostic or other trait perceived to be undesirable [5]. Stigma and Statistical Manual of Mental Disorders-Fifth in mental illness is a serious social problem that has Edition (DSM-5) criteria for ≥ 1 year. The diagnosis a multitude of consequences on the individual con- of mental illness was obtained from the patients’ cerned and his or her family [6]. records. Families are the mainstay of caregiving for persons with mental illnesses, especially in the Middle East [7]. 2.4 Data collection tools Caregiving is a time-consuming responsibility, creating Data were collected by interviewing the caregivers using social, emotional, behavioral, and financial problems for a structured predesigned questionnaire. The question- the caregivers and causing various limitations on their naire included six parts: personal life [8]. The continuous stress of caregiving ad- versely affects their physical and mental health. More- 1- Socio-demographic characteristics of both over, it may affect their ability to care for their mentally caregivers (age, gender, occupation religion, marital ill relatives [9]. However, mental health professionals status, educational level, residence, and relationship focus only on the index patient and the relatives’ needs with the patient) and the patients (age, gender, and concerns are often ignored [10]. marital status, education, and source of patient’s Few studies in Egypt, specifically in Upper Egypt [7] income). explored the stigma and burden among family caregivers 2- Mental illness history [duration of mental illness, of mentally ill patients. The current study assessed the aggressive behavior (injuring or threatening to stigma and burden and their correlates among family injure anyone), suicide, times of inpatient caregivers of mentally ill patients in Assiut governorate. psychiatric hospital admission in the past 6 months], and seeking help from non-psychiatric 2 Methods/experimental physicians and traditional healers before hospital at- 2.1 Study setting tendance [12]. The study was conducted in outpatient clinics and in- 3- Stigma scale for caregivers of people with mental patient wards in the Neurology and Psychiatry Hospital illness (CPMI) [13]: CPMI measures caregivers’ affiliated to Assiut University. Assiut University is lo- affiliate stigma (self-internalization of stigma) and cated in the capital city of Assiut Governorate, which is has three components: affective (7 items), cognitive the largest city in Upper Egypt. The Neurology and (7 items), and behavioral (8 items) components. Psychiatry Hospital serves patients from all governorates The scale is composed of 22 items on a 4-point of Upper Egypt with a large working capacity [11]. scale ranging from strongly disagree (1) to strongly agree (4). The scale ranges from 1 to 88, a higher 2.2 Study design and sample size score indicating a higher level of affiliate stigma. This study was a cross-sectional study targeting family 4- Explanatory model interview catalogue-stigma scale caregivers of patients with mental disorders attending (EMIC-Stigma scale) [14]: EMIC-stigma scale as- the previously mentioned setting. Data were collected sesses caregivers’ associative stigma. Associate during the period from 11 March to 14 August 2017. stigma is a process in which the caregivers are stig- The total sample size was 425 caregivers. The sample matized from the public by their association with size was estimated using the EPI info statistical package mentally ill individuals [15]. It has 15 questions, version 7.2.01 assuming that the proportion of stigma with four answer options [yes (3), possibly (2), un- among caregivers is 0.5, a 95% confidence level, 5% mar- certain (1), and no (0)]. The scale ranges from zero gin of error, and 10% non-response rate. Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 3 of 9 to 45, with a higher score indicating higher associ- 3 Results ate stigma. Table 1 shows the socio-demographic characteristics of 5- Modified attitude toward mental illness the caregivers and their mentally ill relatives. The mean questionnaire (ATMIQ) [16]. The Modified ATMI age of caregivers was 45.1 ± 14.3 years, and females rep- Q has 17 items that measures mental health literacy resented 60.7%. Most of the studied subjects were rural of the participants regarding causes of any mental residents (86.1%) and approximately 70% were married. illness (2 items), knowledge of people with mental Those who were not working/housewives formed about illness (3 items), attitude toward people with mental 66.6%. More than half of caregivers (54.4%) were illiter- illness (6 items), and management of people with ates. Parents represented the main caregivers for about mental illness (6 items). It is a 3-point Likert scale half of the mentally ill patients (48.9%) the mean age of [agree (0), neutral (1), disagree (2)] that ranges from the mentally ill patients was 32.7 ± 12.2 years. More 0 to 34. than half of the patients (52.9%) were females. Nearly 50% were single and 39.1% were married. Illiterate pa- The three previously mentioned scales were translated tients formed approximately 43% while a small percent- from English to Arabic by the researchers, and then they age (4%) had completed university education. Sixty were revised by a psychologist and a linguistic consultant percent of the patients were unemployed but financially and were subjected to reliability testing. Cronbach’s supported by their own families, while only 2.4% were alpha of the CPMI scale was 0.87, Cronbach’s alpha of employed with maintained paid a fixed salary even in its affective, cognitive, and behavioral subscales was 0.81, their illness. 0.85, and 0.62, respectively, and Cronbach’s alpha of Table 2 describes the medical history of the studied EMIC-stigma scale was 0.69. Cronbach’s alpha of modi- mentally ill patients. The common mental illnesses fied ATMIQ was 0.68. among the studied patients were bipolar (48%), Schizo- phrenia/other related psychotic disorders (42.8%) and 6- Arabic version of Zarit Burden Interview [17]; Zarit depression (6.8%). The duration of patient’s mental ill- Burden Interview was originally designed to reflect ness ranged from 1 to 40 years (mean ± SD = 7.93 ± the burden experienced by caregivers of patients 7.323). Approximately one third of patients had aggres- with dementia [18]. However, a meta-analytic study sive behavior (32.2%), while 15.5% had a suicidal history. concluded that the reliability of the instrument is Nearly 60% of patients were not admitted in psychiatric validated across all caregivers of patients with differ- hospital in the past 6 months compared to 38% who ent illnesses (e.g., cancer, dementia, physical illness, were admitted for only one time. Psychiatric services mental illness, etc.) for any population [19]. The were chosen as the first choice in seeking help by only scale consists of 22 items on a 5-point Likert scale 17.4% of the caregivers under study for their mentally ill ranging from never (0) to nearly always (4). The relatives compared to 80% who sought care first from total score estimates the degree of burden that was traditional healers. recoded into 14–20 = little or no burden, 21–40 = Table 3 shows that the mean scores of CPMI total mild to a moderate burden, 41–60 = moderate to a scale, affective, cognitive, and behavioral subscales were severe burden, 61–88 = severe burden. Cronbach’s 56.80 ± 7.99, 22.53 ± 3.23, 17.71 ± 3.84, 16.54 ± 2.85, re- alpha of Zarit burden scale was 0.87. spectively. The mean score of EMIC-Stigma scale was 13.81 ± 5.42. The mean score of Zarit burden scale was 2.5 Statistical analysis 55.20 ± 9.82. The mean value of ATMI total scale Data were analyzed using SPSS version 20. Quantitative equalled 16.90 ± 4.22. data were expressed as mean and standard deviation, Most study caregivers (92.5%) suffered from moderate while frequencies and percentages expressed the qualita- to severe and severe burden as shown in Fig. 1. tive data. The significant correlates of the affiliate stigma of the Bivariate analysis was performed to explore the vari- studied caregivers as demonstrated in Table 4 were be- ables that were significantly associated with the stigma ing parents of patients (p < 0.001) having higher associ- and burden of caregivers to be entered in the regression ate stigma, and aggressive behavior of mentally ill models. To identify the determinants of burden, affiliate, patients, while Table 5 shows that being caregivers’ rela- and associate stigma, three linear regression models tives other than parents, having higher affiliate stigma, were conducted. The independent variables in the having poor knowledge and negative attitude toward models were either the significant variables in bivariate mental illness, and the aggressive behavior of mentally ill analysis or identified variables reported in the literature patients were the significant correlates for associate review. A significant difference was considered when the stigma of the study caregivers. The significant correlates p value was less than 0.05. for the perceived burden of the studied caregivers as Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 4 of 9 Table 1 Socio-demographic characteristics of the study Table 2 Medical history of the studied mentally ill patients, caregivers and their mentally ill patients, Assiut University Assiut University Hospital, Egypt, 2017 Hospital, Egypt, 2017 Variables No. (n = 425) % Variables Caregivers Patients Mental illness diagnosis No. % No. % Bipolar disorder 204 48.0 (425) (425) Schizophrenia and other related 182 42.8 Age (years) psychotic disorders Range 21–85 5–75 Depression 29 6.8 Mean ± SD 45.1 ± 14.3 32.7 ± 12.2 Child psychiatric disorders 10 2.4 Gender Mental illness duration (years) Male 167 39.3 200 47.1 Mean ± SE (Range) 7.93 ± 0.35 (1–40) Female 258 60.7 225 52.9 Aggressive behavior (injuring/threatening Residence to injure anyone) Urban 59 13.9 59 13.9 Yes 137 32.2 Rural 366 86.1 366 86.1 No 288 67.8 Marital status Suicidal history Married 295 69.4 166 39.1 Yes 66 15.5 Single 54 12.7 206 48.5 No 359 84.5 Divorced 9 2.1 32 7.5 Frequency of hospital admission in the past 6 months Widowed 67 15.8 21 4.9 0 242 56.9 Educational status 1 162 38.1 Illiterate 231 54.4 182 42.8 2 20 4.7 Can read and write 37 8.7 32 7.5 3 1 0.2 Primary/preparatory 35 8.2 91 21.4 Mean ± SD 0.48±0.59 Secondary/technical/above average 90 21.2 103 24.2 First sought care before hospital attendance University 32 7.5 17 4.0 Traditional healer only 304 71.5 Caregivers occupation Psychiatrist from the start 74 17.4 Does not work/\housewife 283 66.6 –– Both traditional and non-psychiatric physician 37 8.7 Unskilled/skilled worker 66 15.5 –– Non-psychiatric physician only 10 2.4 Employee 25 5.9 –– SD = 7.323 Professional 9 2.1 –– Farmer 42 9.9 –– Table 3 Stigma, burden, and attitude toward mental illness of Caregivers relationship with the patients the caregivers, Assiut, Egypt, 2017 Parents 208 48.9 –– Variables Range Mean ± SD Brother/sister 103 24.2 –– Affiliate Stigma Scale (CPMI) Spouse (husband/wife) 48 11.3 –– Affective 10–28 22.53 ± 3.23 Son/daughter 30 7.1 –– Cognitive 9–28 17.71 ± 3.84 Others* 36 8.5 –– Behavioral 8–27 16.54 ± 2.85 Patients income CPMI total scale 31–80 56.80 ± 7.99 Employed and a fixed salary is paid even –– 10 2.4 in his illness Associative stigma (EMIC-Stigma Scale) 0–34 13.81 ± 5.42 Employed and no salary is paid in his illness –– 39 9.2 Zarit burden scale 6–74 55.20 ± 9.82 Unemployed and has a pension for his –– 99 23.3 Caregiver’s attitude toward mental illness scale (ATMI) mother or father or exceptional Causes of mental illness 0–4 2.03 ± 1.19 Unemployed and has no source of income, –– 257 60.5 financially supported by his own family Knowledge of people with mental illness 0–5 0.59 ± 1.03 Retired with a pension –– 1 0.2 Attitude toward people with mental illness 0–12 6.77 ± 2.74 Non-applicable (e.g., children) –– 19 4.5 Care and management of people with 2–12 7.49 ± 1.44 mental illness *Others: (grandmother, uncle/aunt, nephew, cousin) ATMI total scale 4–28 16.90 ± 4.22 Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 5 of 9 Fig. 1 Level of burden among the studied caregivers assessed by Zarit burden scale demonstrated in Table 6 were the following caregivers’ 4 Discussion criteria; being male, non-educated, having higher affiliate After the improvement of antipsychotics in the last two stigma, having higher associate stigma, having lower decades, there was a shift from hospital-based to knowledge and negative attitude toward mental illness, community-based care. This shift added a high burden seeking traditional healers and non-psychiatrists from and stigma on family caregivers [6, 20]. In this study, the the start, and caring after young mentally ill relatives. caregivers suffered from both affiliate and associate Table 4 Correlates of affiliate stigma among the studied participants at Assiut University Hospital, 2017 Variables Regression coefficient t value p value 95% CI Age of the caregiver 0.013 0.452 0.651 − 0.045–0.071 Caregiver gender (female) 1.527 1.595 0.112 − 0.355–3.410 Caregiver marital status (single) − 0.152 − 0.159 0.874 − 2.040–1.735 Caregiver occupation (does not work/housewife) 0.829 0.854 0.393 − 1.078–2.736 Caregiver residence (rural) 0.562 0.711 0.478 − 0.993–2.118 Caregiver education (illiterate/read and write) 0.470 0.694 0.488 − 0.862−1.801 Caregiver relation (parents) 4.529 5.208 < 0.001 2.820–6.239 Age of patient − 0.004 − 0.120 0.904 − 0.066–0.059 Patient gender (female) − 0.310 − 0.550 0.583 − 1.416–0.797 Patient marital status (single) 0.748 1.202 0.230 − 0.475–1.972 Aggressive behavior (yes) 1.343 2.077 0.038 0.072–2.615 Suicide (yes) − 1.160 − 1.491 0.137 − 2.690–0.370 Care first sought (traditional healer or non-psychiatrist) − 0.050 − 0.068 0.946 − 1.483–1.384 Inpatient admission (yes) − 0.932 − 1.653 0.099 − 2.041–0.176 Duration of current illness 0.028 0.656 0.512 − 0.055–0.111 Diagnosis of mental illness (schizophrenia and other related psychotic disorders) 1.027 1.903 0.058 − 0.034–2.087 Associate stigma (EMIC-Stigma Scale) 0.793 14.508 < 0.001 0.685–0.900 ATMI Scale − 0.120 − 1.726 0.085 − 0.257–0.017 Adjusted linear regression model; F = 29.961, p < 0.001, adjusted R = 0.551 Reference groups: males, ever married, work, urban residence, educated at least primary education, other than parents, no injury, no suicide, psychiatrist, not inpatient admitted, other than schizophrenia Significant variable Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 6 of 9 Table 5 Correlates of associate stigma among the studied participants at Assiut University Hospital, Egypt, 2017 Variables Regression coefficient t value p value 95 % CI Age of the caregiver 0.011 0.486 0.627 − 0.032–0.053 Caregiver gender (female) − 0.297 − 0.420 0.675 − 1.689–1.094 Caregiver marital status (single) 0.646 0.915 0.361 − 0.743–2.036 Caregiver occupation (does not work/housewife) 0.181 0.253 0.801 − 1.226–1.587 Caregiver residence (rural) − 0.039 − 0.067 0.947 − 1.186–1.108 Caregiver education (illiterate/read and write) − 0.221 − 0.442 0.659 − 1.202–0.761 Caregiver relation (parents) − 1.815 − 2.767 0.006 − 3.104–0.526 Age of patient − 0.028 − 1.179 0.239 − 0.074–0.018 Patient gender (female) − 0.154 − 0.370 0.711 − 0.969–0.662 Patient marital status (single) − 0.563 − 1.229 0.220 − 1.465–0.338 Aggressive behavior (yes) 1.332 2.806 0.005 0.399–2.265 Suicide (yes) 0.531 0.925 0.356 − 0.598–1.661 Care first sought (traditional healer or non-psychiatrist ) 1.009 1.886 0.060 − 0.043–2.060 Inpatient admission (yes) 0.159 0.381 0.703 − 0.661–0.979 Duration of current illness 0.018 0.573 0.567 − 0.043–0.079 Diagnosis of mental illness (schizophrenia and other related psychotic disorders) − 0.086 − 0.215 0.830 -0.871–0.699 ATMI Scale − 0.158 − 3.107 0.002 − 0.258 to − 0.058 Affiliate stigma (CPMI-Stigma Scale) 0.431 14.508 < 0.001 0.372–0.489 Adjusted linear regression model; F = 21.980, p < 0.001, adjusted R = 0.471 Reference groups: males, ever married, work, urban, educated at least primary education, other than parents, no injury, no suicide, psychiatrist, not inpatient admitted, other than schizophrenia Significant variable stigma. Affiliate stigma was highest for affective component Behavioral manifestations of mental illness are import- followed by cognitive component and finally behavioral com- ant in shaping the caregiver stigma. The current study ponent. This hierarchy of different components is similar to revealed that aggressive behavior of patients was corre- that reported in previous studies from India among care- lated with the perception of the affiliate stigma among givers of patients with schizophrenia [15, 21]. This revealed their caregivers. This is in concordance with a Chinese that despite experiencing a high level of emotional distress study where the severity of patients with schizophrenia’ and expecting negative reactions from others, caregivers of positive symptoms, including aggressive symptoms was mentally ill patients do not neglect their mentally ill relatives positively correlated with the perception of self-stigma and they would continue caring for them [21]. among their caregivers [24]. A qualitative Indian study When the nature of the relationship between the reported that patients with schizophrenia positive symp- caregivers and their patients was considered, our toms, particularly aggressive or disinhibited behavior in study showed that parents suffered from an affiliate public, were linked to negative reactions towards care- stigma more than other patients’ relatives. Similarly, givers and feelings of shame [25]. Indian [21] and Singaporean [22] parents of mentally Similarly, aggressive behavior was correlated with the ill patients experienced more affiliate stigma than perception of associate stigma among the studied care- other relatives. In fact, parents are more likely to givers. This finding is consistent with a study in Flan- blame themselves for contributing to their children’s ders, which reported that the level of associate stigma illness, which may explain their more perception of among family members of patients with psychosis was affiliate stigma [21]. significantly predicted by the burden of aggressive dis- Compared to parents, being spouse and other patients’ ruptions to family housemates of the patient with psych- relatives correlated with the associate stigma of the stud- osis [26]. ied caregivers. This is consistent with a study in Sweden Poor knowledge and negative attitude toward mental ill- where spouses of mentally ill patients had more percep- ness did not affect the perception of self-stigma in the tion of associated stigma compared to other patients’ rel- studied caregivers; however, it significantly increased their atives [23]. Spouses may be exposed to greater stigma perception of associate stigma. This result is consistent than parents because their ill relatives interfere with with the study in India among caregivers of mentally ill their social networks to a greater extent [23]. patients where poor knowledge about mental illness Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 7 of 9 Table 6 Correlates of burden among the studied participants at Assiut University Hospital, Egypt, 2017 Variables Regression coefficient t value p value 95 % CI Age of the caregiver − 0.079 − 1.958 0.051 − 0.158–0.000 Caregiver gender (female) − 3.638 − 2.772 0.006 − 6.218 to − 1.058 Caregiver marital status (single) 0.205 0.156 0.876 − 2.375–2.784 Caregiver occupation (does not work/housewife) 1.809 1.347 0.179 − 0.830–4.448 Caregiver residence (rural) − 0.282 − 0.261 0.794 − 2.411–1.847 Caregiver education (illiterate/read and write) 1.864 2.013 0.045 0.043–3.685 Caregiver relation (parents) 1.419 1.157 0.248 − 0.992–3.830 Age of patient − 0.136 − 3.003 0.003 − 0.225 to − 0.047 Patient gender (female) 1.263 1.641 0.102 − 0.250–2.776 Patient marital status (Single) − 1.087 − 1.260 0.208 − 2.782–0.609 Patient income (no constant income) − 0.911 − 1.010 0.313 − 2.686–0.863 Aggressive behavior (yes) 0.301 0.339 0.734 − 1.444–2.047 Suicide (yes) 0.770 0.723 0.470 − 1.325–2.865 Care first sought (traditional healer or non-psychiatrist) 2.378 2.383 0.018 0.416–4.341 Inpatient admission (yes) 0.382 0.494 0.622 − 1.137–1.900 Duration of current illness 0.104 1.801 0.072 − 0.010–0.217 Diagnosis of mental illness (schizophrenia and other related psychotic disorders) 0.272 0.368 0.713 − 1.183–1.727 ATMI Scale − 0.221 − 2.315 0.021 − 0.408 to − 0.033 Affiliate stigma (CPMI-Stigma Scale) 0.467 6.894 < 0.001 0.334–0.601 Associate stigma (EMIC-Stigma Scale) 0.409 4.437 < 0.001 0.228–0.590 Adjusted linear regression model; F = 18.099, p < 0.001, adjusted R = 0.446 Reference groups: males, ever married, work, urban, educated at least primary education, other than parents, constant income, no injury, no suicide, psychiatrist, not inpatient admitted, other than schizophrenia Significant variable causation, signs and symptoms, and leaning toward mod- is confusing and inconsistent. Caregiver gender explains ern methods of treatment were positively associated with only a minor proportion of the variance in the caregiving their perception of associate stigma [4]. burden [31]. The perception of affiliate stigma was significantly cor- The educational level of the caregivers is a variable related with associate stigma in the studied subjects. that can modulate the degree of burden experienced; This can be explained by the internalization of self- non-educated caregivers (illiterates/read and write) sig- stigma by the caregivers of mentally ill relatives as a con- nificantly experienced more burden in the current study. sequence of their affection by public stereotype (public This finding is consistent with different studies in South stigma), which they integrate into their self-concept [27]. America and Cyprus where the caregivers with higher The studied caregivers suffered a high burden; the mean levels of education had less burden [30, 32]. score of Zarit burden scale was 55.20 ± 9.82. This rate is Concerning the association between caregivers’ burden higher than that detected among caregivers of bipolar dis- and patients’ age, caring after a young mentally ill rela- order patients in Brazil (32.0 ± 19) and in caregivers of pa- tive was a predictor of the increasing burden of the stud- tients with schizophrenia in Iran (51.73 ± 18.23) [28, 29]. ied subjects. Young patients may have a more severe In contrast, the mean burden score was higher (64.51 ± form of mental illness and/or lack adequate vocational 12.97) among caregivers of patients with schizophrenia in and independent living skills which increases their care- South America [30]. However, the percentage of those ex- givers’ burden [33]. perienced moderate to severe or severe burden was similar Having higher affiliate stigma was associated with a to the current study (92.2%) [30]. significant increased level of burden of the studied sub- In this study, the male gender of the caregiver was a jects. This result conformes to a similar American study correlate of higher burden perception in linear regres- where there was a significant correlation between care- sion. A systematic review of gender differences in care- giving burden and affiliate stigma [34]. Similarly, having giving among family caregivers of people with mental higher associate stigma was significantly associated with illnesses concluded that gender difference in caregiving an increasing level of burden of the studied caregivers. Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 8 of 9 This result is in concordance with a cross-sectional sur- them to cope with the aggressive behavior of their men- vey among family members of people with a mental ill- tally ill relatives. A future national representative study ness in the USA where the perception of associate is recommended to explore the stigma and burden per- stigma was a significant predictor of greater psycho- ception among those caregivers and to compare the situ- logical distress [35]. ation between different Egyptian areas. Also, a The diagnosed type of mental illness was not associ- qualitative study is recommended to explore details of ated with caregivers’ burden or stigma. This finding is the caregivers’ experiences of stigma and caregiving consistent with different studies among Polish, German, burden. Austrian, Euro-American, and Sweden caregivers, where Abbreviations the overall caregivers’ burden and stigma were inde- WHO: World Health Organization; DSM-5: Diagnostic and Statistical Manual pendent of the type of mental illness [23, 36–38]. of Mental Disorders-Fifth Edition; CPMI: Stigma scale for Caregivers of People with Mental Illness; EMIC-Stigma scale: Explanatory Model Interview The pattern of seeking care for mental illness can Catalogue-stigma scale; ATMIQ: Attitude Toward Mental Illness Questionnaire; modulate the level of burden experienced by the care- USA: United States of America givers. Seeking traditional healers and non-psychiatric care from the start was a significant predictor of the Acknowledgements Not applicable higher level of burden of the studied subjects. This can be interpreted by the fact that seeking care through trad- Authors’ contributions itional healers and non-psychiatrists leads to delayed O.S contributed in the study design, collected, analyzed, interpreted the data, and prepared the main manuscript. G.S contributed in analyzing, treatment of the patients’ illness, so more problematic interpretation of the data, and revising the manuscript. R.H contributed in behavior and hence more burdens can be perceived [39]. the study design, interpretation of the data, and revising the manuscript. Unfortunately, traditional healers represent the highest D.M suggested the research problem and contributed in study design, analysis, interpretation of the data, and writing the manuscript. All authors percentage of the first consulted care providers in men- read and approved the final manuscript. tal illness in Egypt [12, 40, 41]. Most studied caregivers (80%) sought advice for the first time from traditional Authors’ information O.S is an assistant lecturer of Community, Occupational and Environmental healers for the care of their mentally ill relatives. This Medicine Department, Faculty of Medicine, Helwan University, Cairo, Egypt. finding is concordant with the results of other Egyptian G.S is a professor of Public Health and Community Medicine Department, studies. In Al Minia University Hospital, 86.8% of pa- Faculty of Medicine, Assiut University, Assiut, Egypt. R.H is a lecturer of Psychiatry, Neuropsychiatry Department, Faculty of Medicine, Assiut tients were treated by non-psychiatric medical and trad- University, Assiut, Egypt. D.M is a lecturer of Public Health and Community itional services before they sought psychiatric care [12]. Medicine Department, Faculty of Medicine, Assiut University, Egypt. In addition, 60% of outpatients attending Ain Shams University Psychiatric Clinic in Cairo have been trad- Funding The current study was not supported by any national or international itional healers before coming to psychiatrists [40]. Nearly institution or organization. three quarters (77.5%) of patients with schizophrenia in Ismailia have attended traditional treatment, and 59% of Availability of data and materials The data sets generated and analyzed during the current study are available them sought it as a first treatment choice [41]. from the corresponding author on reasonable request. 4.1 Limitations of the study Ethics approval and consent to participate The study is limited by its cross-sectional nature, which Approval to conduct the study was obtained before starting the data collection via the Ethical Review Committee of Assiut Faculty of Medicine inhibits a complete understanding of the causal relation- (IRB number was 17101177 and the date of approval was 19 December ship between determinants and caregiving outcomes. 2016). Official approval was obtained from the administrative authority in Due to the nature of the mental illness, the researchers Neurological and Psychiatric Hospital at Assiut University. Written informed consent was obtained from the study participants themselves prior to the applied a hospital-based study and used a purposive interview. For those who were illiterates, the written consent was signed in sampling technique, which limits the generalization of the presence of a witness. Privacy and confidentiality of all data were the findings to all family caregivers of the mentally ill in assured by ensuring the anonymity of the questionnaire, interviewing the participant separately in a closed room, and keeping data files in a safe the community. place. 5 Conclusions and recommendations Consent for publication Not applicable This study is one of the earliest studies in Upper Egypt that targeted family caregivers of mentally ill patients. Competing interests Unfortunately, the studied caregivers’ suffered from The authors declare that they have no competing interests. stigma and a high level of burden. Mental health institu- Author details tions should provide psycho-educational programs to all Department of Community, Occupational and Environmental Medicine, family caregivers of mentally ill patients to improve their 2 Faculty of Medicine, Helwan University, Helwan, Egypt. Department of knowledge and attitude toward mental illness and enable Public Health & Community Medicine, Faculty of Medicine, Assiut University, Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 9 of 9 Assiut, Egypt. Department of Neuropsychiatry, Assiut University Hospital, 24. Phillips MR, Pearson V, Li F, Xu M, Yang L. Stigma and expressed emotion: a Assiut University, Assiut, Egypt. study of people with schizophrenia and their family members in China. Br J Psychiatry. 2002;181:488–93. 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Stigma and burden of mental illness and their correlates among family caregivers of mentally ill patients

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Abstract

Background and objectives: Family caregivers play a curial role in supporting and caring for their mentally ill relatives. Their struggle for facing stigma and shouldering caregiving burden is marginalized, undervalued, and invisible to medical services. This study assessed the stigma and burden of mental illnesses, and their correlates among family caregivers of mentally ill patients. Methods: A cross-sectional study design was used to collect data from 425 main family caregivers of mentally ill patients at Assiut University Hospital. A structured interview questionnaire was designed to collect socio- demographic data of both patients and their caregivers. Stigma scale for caregivers of people with mental illness (CPMI) was used to assess the affiliate stigma, while the associative stigma was assessed by the explanatory model interview catalogue stigma scale (EMIC-Stigma scale). The caregivers’ burden was assessed using Zarit burden Interview, and Modified Attitude toward Mental Illness Questionnaire was used to assess caregivers’ knowledge and attitude towards mental illness. Results: Bipolar disorder (48%) and schizophrenia/other related psychotic disorders (42.8%) were the most common mental illnesses among the study patients. The mean scores of CPMI total scale, EMIC-Stigma scale, and Zarit Burden scale were 56.80 ± 7.99, 13.81 ± 5.42, and 55.20 ± 9.82, respectively. The significant correlates for affiliate stigma were being parents of patients (ß = 4.529, p < 0.001), having higher associate stigma (ß = 0.793, p < 0.001), and aggressive behavior of mentally ill patients (ß = 1.343, p = 0.038). The significant correlates for associate stigma of the study caregivers were being caregivers’ relatives other than parents (ß = 1.815, p = 0.006), having high affiliate stigma (ß = 0.431, p < 0.001), having poor knowledge and negative attitude towards mental illness (ß = − 0.158, p = 0.002), and aggressive behavior of mentally ill relatives (ß = 1.332, p = 0.005). The correlates for the high burden were being male (ß = 3.638, p = 0.006), non-educated caregiver (ß = 1.864, p = 0.045), having high affiliate stigma (ß = 0.467, p < 0.001), having high associative stigma (ß = 0.409, p < 0.001), having poor knowledge and negative attitude toward mental illness (ß = − 0.221, p = 0.021), seeking traditional healers and non-psychiatrist’s care from the start (ß = 2.378, p = 0.018), and caring after young mentally ill relatives (ß = − 0.136, p = 0.003). Conclusion: The studied caregivers suffered from stigma and a high level of burden. Psycho-educational programs directed toward family caregivers are highly recommended. Keywords: Stigma, Burden, Mental illness, Family caregivers, Egypt * Correspondence: omnyasayed111@gmail.com Department of Community, Occupational and Environmental Medicine, Faculty of Medicine, Helwan University, Helwan, Egypt Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 2 of 9 1 Introduction 2.3 Study participants Mental illnesses are prevalent worldwide and in The family caregivers of mentally ill patients who ful- Egypt. The global prevalence of common mental dis- filled the following criteria were included in the study: orders is approximately 1 in 5 adults (17.6%) [1]. A recent WHO meta-analysis estimated that the preva- – Caregivers aged ≥ 21 years. lence of mental disorders was 22.1% in emergency – Must be intimately involved in the care of the settings [2]. In Egypt, the National Survey of Mental patient for ≥ 1 year (i.e., looking after the daily Disorders estimated overall prevalence as 16.93% of needs, supervising the medications, bringing the the studied adult population [3]. patient to the hospital, staying with the patient The discrimination and stigma surrounding mental during the inpatient stay, and maintaining liaison illnesses are widespread [4]. Stigma is defined as the with the hospital staff). prejudice, avoidance, rejection, and discrimination di- – Caring for patients who met the principal diagnosis rected at people believed to have an illness, disorder, of any mental disorder according to the Diagnostic or other trait perceived to be undesirable [5]. Stigma and Statistical Manual of Mental Disorders-Fifth in mental illness is a serious social problem that has Edition (DSM-5) criteria for ≥ 1 year. The diagnosis a multitude of consequences on the individual con- of mental illness was obtained from the patients’ cerned and his or her family [6]. records. Families are the mainstay of caregiving for persons with mental illnesses, especially in the Middle East [7]. 2.4 Data collection tools Caregiving is a time-consuming responsibility, creating Data were collected by interviewing the caregivers using social, emotional, behavioral, and financial problems for a structured predesigned questionnaire. The question- the caregivers and causing various limitations on their naire included six parts: personal life [8]. The continuous stress of caregiving ad- versely affects their physical and mental health. More- 1- Socio-demographic characteristics of both over, it may affect their ability to care for their mentally caregivers (age, gender, occupation religion, marital ill relatives [9]. However, mental health professionals status, educational level, residence, and relationship focus only on the index patient and the relatives’ needs with the patient) and the patients (age, gender, and concerns are often ignored [10]. marital status, education, and source of patient’s Few studies in Egypt, specifically in Upper Egypt [7] income). explored the stigma and burden among family caregivers 2- Mental illness history [duration of mental illness, of mentally ill patients. The current study assessed the aggressive behavior (injuring or threatening to stigma and burden and their correlates among family injure anyone), suicide, times of inpatient caregivers of mentally ill patients in Assiut governorate. psychiatric hospital admission in the past 6 months], and seeking help from non-psychiatric 2 Methods/experimental physicians and traditional healers before hospital at- 2.1 Study setting tendance [12]. The study was conducted in outpatient clinics and in- 3- Stigma scale for caregivers of people with mental patient wards in the Neurology and Psychiatry Hospital illness (CPMI) [13]: CPMI measures caregivers’ affiliated to Assiut University. Assiut University is lo- affiliate stigma (self-internalization of stigma) and cated in the capital city of Assiut Governorate, which is has three components: affective (7 items), cognitive the largest city in Upper Egypt. The Neurology and (7 items), and behavioral (8 items) components. Psychiatry Hospital serves patients from all governorates The scale is composed of 22 items on a 4-point of Upper Egypt with a large working capacity [11]. scale ranging from strongly disagree (1) to strongly agree (4). The scale ranges from 1 to 88, a higher 2.2 Study design and sample size score indicating a higher level of affiliate stigma. This study was a cross-sectional study targeting family 4- Explanatory model interview catalogue-stigma scale caregivers of patients with mental disorders attending (EMIC-Stigma scale) [14]: EMIC-stigma scale as- the previously mentioned setting. Data were collected sesses caregivers’ associative stigma. Associate during the period from 11 March to 14 August 2017. stigma is a process in which the caregivers are stig- The total sample size was 425 caregivers. The sample matized from the public by their association with size was estimated using the EPI info statistical package mentally ill individuals [15]. It has 15 questions, version 7.2.01 assuming that the proportion of stigma with four answer options [yes (3), possibly (2), un- among caregivers is 0.5, a 95% confidence level, 5% mar- certain (1), and no (0)]. The scale ranges from zero gin of error, and 10% non-response rate. Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 3 of 9 to 45, with a higher score indicating higher associ- 3 Results ate stigma. Table 1 shows the socio-demographic characteristics of 5- Modified attitude toward mental illness the caregivers and their mentally ill relatives. The mean questionnaire (ATMIQ) [16]. The Modified ATMI age of caregivers was 45.1 ± 14.3 years, and females rep- Q has 17 items that measures mental health literacy resented 60.7%. Most of the studied subjects were rural of the participants regarding causes of any mental residents (86.1%) and approximately 70% were married. illness (2 items), knowledge of people with mental Those who were not working/housewives formed about illness (3 items), attitude toward people with mental 66.6%. More than half of caregivers (54.4%) were illiter- illness (6 items), and management of people with ates. Parents represented the main caregivers for about mental illness (6 items). It is a 3-point Likert scale half of the mentally ill patients (48.9%) the mean age of [agree (0), neutral (1), disagree (2)] that ranges from the mentally ill patients was 32.7 ± 12.2 years. More 0 to 34. than half of the patients (52.9%) were females. Nearly 50% were single and 39.1% were married. Illiterate pa- The three previously mentioned scales were translated tients formed approximately 43% while a small percent- from English to Arabic by the researchers, and then they age (4%) had completed university education. Sixty were revised by a psychologist and a linguistic consultant percent of the patients were unemployed but financially and were subjected to reliability testing. Cronbach’s supported by their own families, while only 2.4% were alpha of the CPMI scale was 0.87, Cronbach’s alpha of employed with maintained paid a fixed salary even in its affective, cognitive, and behavioral subscales was 0.81, their illness. 0.85, and 0.62, respectively, and Cronbach’s alpha of Table 2 describes the medical history of the studied EMIC-stigma scale was 0.69. Cronbach’s alpha of modi- mentally ill patients. The common mental illnesses fied ATMIQ was 0.68. among the studied patients were bipolar (48%), Schizo- phrenia/other related psychotic disorders (42.8%) and 6- Arabic version of Zarit Burden Interview [17]; Zarit depression (6.8%). The duration of patient’s mental ill- Burden Interview was originally designed to reflect ness ranged from 1 to 40 years (mean ± SD = 7.93 ± the burden experienced by caregivers of patients 7.323). Approximately one third of patients had aggres- with dementia [18]. However, a meta-analytic study sive behavior (32.2%), while 15.5% had a suicidal history. concluded that the reliability of the instrument is Nearly 60% of patients were not admitted in psychiatric validated across all caregivers of patients with differ- hospital in the past 6 months compared to 38% who ent illnesses (e.g., cancer, dementia, physical illness, were admitted for only one time. Psychiatric services mental illness, etc.) for any population [19]. The were chosen as the first choice in seeking help by only scale consists of 22 items on a 5-point Likert scale 17.4% of the caregivers under study for their mentally ill ranging from never (0) to nearly always (4). The relatives compared to 80% who sought care first from total score estimates the degree of burden that was traditional healers. recoded into 14–20 = little or no burden, 21–40 = Table 3 shows that the mean scores of CPMI total mild to a moderate burden, 41–60 = moderate to a scale, affective, cognitive, and behavioral subscales were severe burden, 61–88 = severe burden. Cronbach’s 56.80 ± 7.99, 22.53 ± 3.23, 17.71 ± 3.84, 16.54 ± 2.85, re- alpha of Zarit burden scale was 0.87. spectively. The mean score of EMIC-Stigma scale was 13.81 ± 5.42. The mean score of Zarit burden scale was 2.5 Statistical analysis 55.20 ± 9.82. The mean value of ATMI total scale Data were analyzed using SPSS version 20. Quantitative equalled 16.90 ± 4.22. data were expressed as mean and standard deviation, Most study caregivers (92.5%) suffered from moderate while frequencies and percentages expressed the qualita- to severe and severe burden as shown in Fig. 1. tive data. The significant correlates of the affiliate stigma of the Bivariate analysis was performed to explore the vari- studied caregivers as demonstrated in Table 4 were be- ables that were significantly associated with the stigma ing parents of patients (p < 0.001) having higher associ- and burden of caregivers to be entered in the regression ate stigma, and aggressive behavior of mentally ill models. To identify the determinants of burden, affiliate, patients, while Table 5 shows that being caregivers’ rela- and associate stigma, three linear regression models tives other than parents, having higher affiliate stigma, were conducted. The independent variables in the having poor knowledge and negative attitude toward models were either the significant variables in bivariate mental illness, and the aggressive behavior of mentally ill analysis or identified variables reported in the literature patients were the significant correlates for associate review. A significant difference was considered when the stigma of the study caregivers. The significant correlates p value was less than 0.05. for the perceived burden of the studied caregivers as Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 4 of 9 Table 1 Socio-demographic characteristics of the study Table 2 Medical history of the studied mentally ill patients, caregivers and their mentally ill patients, Assiut University Assiut University Hospital, Egypt, 2017 Hospital, Egypt, 2017 Variables No. (n = 425) % Variables Caregivers Patients Mental illness diagnosis No. % No. % Bipolar disorder 204 48.0 (425) (425) Schizophrenia and other related 182 42.8 Age (years) psychotic disorders Range 21–85 5–75 Depression 29 6.8 Mean ± SD 45.1 ± 14.3 32.7 ± 12.2 Child psychiatric disorders 10 2.4 Gender Mental illness duration (years) Male 167 39.3 200 47.1 Mean ± SE (Range) 7.93 ± 0.35 (1–40) Female 258 60.7 225 52.9 Aggressive behavior (injuring/threatening Residence to injure anyone) Urban 59 13.9 59 13.9 Yes 137 32.2 Rural 366 86.1 366 86.1 No 288 67.8 Marital status Suicidal history Married 295 69.4 166 39.1 Yes 66 15.5 Single 54 12.7 206 48.5 No 359 84.5 Divorced 9 2.1 32 7.5 Frequency of hospital admission in the past 6 months Widowed 67 15.8 21 4.9 0 242 56.9 Educational status 1 162 38.1 Illiterate 231 54.4 182 42.8 2 20 4.7 Can read and write 37 8.7 32 7.5 3 1 0.2 Primary/preparatory 35 8.2 91 21.4 Mean ± SD 0.48±0.59 Secondary/technical/above average 90 21.2 103 24.2 First sought care before hospital attendance University 32 7.5 17 4.0 Traditional healer only 304 71.5 Caregivers occupation Psychiatrist from the start 74 17.4 Does not work/\housewife 283 66.6 –– Both traditional and non-psychiatric physician 37 8.7 Unskilled/skilled worker 66 15.5 –– Non-psychiatric physician only 10 2.4 Employee 25 5.9 –– SD = 7.323 Professional 9 2.1 –– Farmer 42 9.9 –– Table 3 Stigma, burden, and attitude toward mental illness of Caregivers relationship with the patients the caregivers, Assiut, Egypt, 2017 Parents 208 48.9 –– Variables Range Mean ± SD Brother/sister 103 24.2 –– Affiliate Stigma Scale (CPMI) Spouse (husband/wife) 48 11.3 –– Affective 10–28 22.53 ± 3.23 Son/daughter 30 7.1 –– Cognitive 9–28 17.71 ± 3.84 Others* 36 8.5 –– Behavioral 8–27 16.54 ± 2.85 Patients income CPMI total scale 31–80 56.80 ± 7.99 Employed and a fixed salary is paid even –– 10 2.4 in his illness Associative stigma (EMIC-Stigma Scale) 0–34 13.81 ± 5.42 Employed and no salary is paid in his illness –– 39 9.2 Zarit burden scale 6–74 55.20 ± 9.82 Unemployed and has a pension for his –– 99 23.3 Caregiver’s attitude toward mental illness scale (ATMI) mother or father or exceptional Causes of mental illness 0–4 2.03 ± 1.19 Unemployed and has no source of income, –– 257 60.5 financially supported by his own family Knowledge of people with mental illness 0–5 0.59 ± 1.03 Retired with a pension –– 1 0.2 Attitude toward people with mental illness 0–12 6.77 ± 2.74 Non-applicable (e.g., children) –– 19 4.5 Care and management of people with 2–12 7.49 ± 1.44 mental illness *Others: (grandmother, uncle/aunt, nephew, cousin) ATMI total scale 4–28 16.90 ± 4.22 Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 5 of 9 Fig. 1 Level of burden among the studied caregivers assessed by Zarit burden scale demonstrated in Table 6 were the following caregivers’ 4 Discussion criteria; being male, non-educated, having higher affiliate After the improvement of antipsychotics in the last two stigma, having higher associate stigma, having lower decades, there was a shift from hospital-based to knowledge and negative attitude toward mental illness, community-based care. This shift added a high burden seeking traditional healers and non-psychiatrists from and stigma on family caregivers [6, 20]. In this study, the the start, and caring after young mentally ill relatives. caregivers suffered from both affiliate and associate Table 4 Correlates of affiliate stigma among the studied participants at Assiut University Hospital, 2017 Variables Regression coefficient t value p value 95% CI Age of the caregiver 0.013 0.452 0.651 − 0.045–0.071 Caregiver gender (female) 1.527 1.595 0.112 − 0.355–3.410 Caregiver marital status (single) − 0.152 − 0.159 0.874 − 2.040–1.735 Caregiver occupation (does not work/housewife) 0.829 0.854 0.393 − 1.078–2.736 Caregiver residence (rural) 0.562 0.711 0.478 − 0.993–2.118 Caregiver education (illiterate/read and write) 0.470 0.694 0.488 − 0.862−1.801 Caregiver relation (parents) 4.529 5.208 < 0.001 2.820–6.239 Age of patient − 0.004 − 0.120 0.904 − 0.066–0.059 Patient gender (female) − 0.310 − 0.550 0.583 − 1.416–0.797 Patient marital status (single) 0.748 1.202 0.230 − 0.475–1.972 Aggressive behavior (yes) 1.343 2.077 0.038 0.072–2.615 Suicide (yes) − 1.160 − 1.491 0.137 − 2.690–0.370 Care first sought (traditional healer or non-psychiatrist) − 0.050 − 0.068 0.946 − 1.483–1.384 Inpatient admission (yes) − 0.932 − 1.653 0.099 − 2.041–0.176 Duration of current illness 0.028 0.656 0.512 − 0.055–0.111 Diagnosis of mental illness (schizophrenia and other related psychotic disorders) 1.027 1.903 0.058 − 0.034–2.087 Associate stigma (EMIC-Stigma Scale) 0.793 14.508 < 0.001 0.685–0.900 ATMI Scale − 0.120 − 1.726 0.085 − 0.257–0.017 Adjusted linear regression model; F = 29.961, p < 0.001, adjusted R = 0.551 Reference groups: males, ever married, work, urban residence, educated at least primary education, other than parents, no injury, no suicide, psychiatrist, not inpatient admitted, other than schizophrenia Significant variable Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 6 of 9 Table 5 Correlates of associate stigma among the studied participants at Assiut University Hospital, Egypt, 2017 Variables Regression coefficient t value p value 95 % CI Age of the caregiver 0.011 0.486 0.627 − 0.032–0.053 Caregiver gender (female) − 0.297 − 0.420 0.675 − 1.689–1.094 Caregiver marital status (single) 0.646 0.915 0.361 − 0.743–2.036 Caregiver occupation (does not work/housewife) 0.181 0.253 0.801 − 1.226–1.587 Caregiver residence (rural) − 0.039 − 0.067 0.947 − 1.186–1.108 Caregiver education (illiterate/read and write) − 0.221 − 0.442 0.659 − 1.202–0.761 Caregiver relation (parents) − 1.815 − 2.767 0.006 − 3.104–0.526 Age of patient − 0.028 − 1.179 0.239 − 0.074–0.018 Patient gender (female) − 0.154 − 0.370 0.711 − 0.969–0.662 Patient marital status (single) − 0.563 − 1.229 0.220 − 1.465–0.338 Aggressive behavior (yes) 1.332 2.806 0.005 0.399–2.265 Suicide (yes) 0.531 0.925 0.356 − 0.598–1.661 Care first sought (traditional healer or non-psychiatrist ) 1.009 1.886 0.060 − 0.043–2.060 Inpatient admission (yes) 0.159 0.381 0.703 − 0.661–0.979 Duration of current illness 0.018 0.573 0.567 − 0.043–0.079 Diagnosis of mental illness (schizophrenia and other related psychotic disorders) − 0.086 − 0.215 0.830 -0.871–0.699 ATMI Scale − 0.158 − 3.107 0.002 − 0.258 to − 0.058 Affiliate stigma (CPMI-Stigma Scale) 0.431 14.508 < 0.001 0.372–0.489 Adjusted linear regression model; F = 21.980, p < 0.001, adjusted R = 0.471 Reference groups: males, ever married, work, urban, educated at least primary education, other than parents, no injury, no suicide, psychiatrist, not inpatient admitted, other than schizophrenia Significant variable stigma. Affiliate stigma was highest for affective component Behavioral manifestations of mental illness are import- followed by cognitive component and finally behavioral com- ant in shaping the caregiver stigma. The current study ponent. This hierarchy of different components is similar to revealed that aggressive behavior of patients was corre- that reported in previous studies from India among care- lated with the perception of the affiliate stigma among givers of patients with schizophrenia [15, 21]. This revealed their caregivers. This is in concordance with a Chinese that despite experiencing a high level of emotional distress study where the severity of patients with schizophrenia’ and expecting negative reactions from others, caregivers of positive symptoms, including aggressive symptoms was mentally ill patients do not neglect their mentally ill relatives positively correlated with the perception of self-stigma and they would continue caring for them [21]. among their caregivers [24]. A qualitative Indian study When the nature of the relationship between the reported that patients with schizophrenia positive symp- caregivers and their patients was considered, our toms, particularly aggressive or disinhibited behavior in study showed that parents suffered from an affiliate public, were linked to negative reactions towards care- stigma more than other patients’ relatives. Similarly, givers and feelings of shame [25]. Indian [21] and Singaporean [22] parents of mentally Similarly, aggressive behavior was correlated with the ill patients experienced more affiliate stigma than perception of associate stigma among the studied care- other relatives. In fact, parents are more likely to givers. This finding is consistent with a study in Flan- blame themselves for contributing to their children’s ders, which reported that the level of associate stigma illness, which may explain their more perception of among family members of patients with psychosis was affiliate stigma [21]. significantly predicted by the burden of aggressive dis- Compared to parents, being spouse and other patients’ ruptions to family housemates of the patient with psych- relatives correlated with the associate stigma of the stud- osis [26]. ied caregivers. This is consistent with a study in Sweden Poor knowledge and negative attitude toward mental ill- where spouses of mentally ill patients had more percep- ness did not affect the perception of self-stigma in the tion of associated stigma compared to other patients’ rel- studied caregivers; however, it significantly increased their atives [23]. Spouses may be exposed to greater stigma perception of associate stigma. This result is consistent than parents because their ill relatives interfere with with the study in India among caregivers of mentally ill their social networks to a greater extent [23]. patients where poor knowledge about mental illness Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 7 of 9 Table 6 Correlates of burden among the studied participants at Assiut University Hospital, Egypt, 2017 Variables Regression coefficient t value p value 95 % CI Age of the caregiver − 0.079 − 1.958 0.051 − 0.158–0.000 Caregiver gender (female) − 3.638 − 2.772 0.006 − 6.218 to − 1.058 Caregiver marital status (single) 0.205 0.156 0.876 − 2.375–2.784 Caregiver occupation (does not work/housewife) 1.809 1.347 0.179 − 0.830–4.448 Caregiver residence (rural) − 0.282 − 0.261 0.794 − 2.411–1.847 Caregiver education (illiterate/read and write) 1.864 2.013 0.045 0.043–3.685 Caregiver relation (parents) 1.419 1.157 0.248 − 0.992–3.830 Age of patient − 0.136 − 3.003 0.003 − 0.225 to − 0.047 Patient gender (female) 1.263 1.641 0.102 − 0.250–2.776 Patient marital status (Single) − 1.087 − 1.260 0.208 − 2.782–0.609 Patient income (no constant income) − 0.911 − 1.010 0.313 − 2.686–0.863 Aggressive behavior (yes) 0.301 0.339 0.734 − 1.444–2.047 Suicide (yes) 0.770 0.723 0.470 − 1.325–2.865 Care first sought (traditional healer or non-psychiatrist) 2.378 2.383 0.018 0.416–4.341 Inpatient admission (yes) 0.382 0.494 0.622 − 1.137–1.900 Duration of current illness 0.104 1.801 0.072 − 0.010–0.217 Diagnosis of mental illness (schizophrenia and other related psychotic disorders) 0.272 0.368 0.713 − 1.183–1.727 ATMI Scale − 0.221 − 2.315 0.021 − 0.408 to − 0.033 Affiliate stigma (CPMI-Stigma Scale) 0.467 6.894 < 0.001 0.334–0.601 Associate stigma (EMIC-Stigma Scale) 0.409 4.437 < 0.001 0.228–0.590 Adjusted linear regression model; F = 18.099, p < 0.001, adjusted R = 0.446 Reference groups: males, ever married, work, urban, educated at least primary education, other than parents, constant income, no injury, no suicide, psychiatrist, not inpatient admitted, other than schizophrenia Significant variable causation, signs and symptoms, and leaning toward mod- is confusing and inconsistent. Caregiver gender explains ern methods of treatment were positively associated with only a minor proportion of the variance in the caregiving their perception of associate stigma [4]. burden [31]. The perception of affiliate stigma was significantly cor- The educational level of the caregivers is a variable related with associate stigma in the studied subjects. that can modulate the degree of burden experienced; This can be explained by the internalization of self- non-educated caregivers (illiterates/read and write) sig- stigma by the caregivers of mentally ill relatives as a con- nificantly experienced more burden in the current study. sequence of their affection by public stereotype (public This finding is consistent with different studies in South stigma), which they integrate into their self-concept [27]. America and Cyprus where the caregivers with higher The studied caregivers suffered a high burden; the mean levels of education had less burden [30, 32]. score of Zarit burden scale was 55.20 ± 9.82. This rate is Concerning the association between caregivers’ burden higher than that detected among caregivers of bipolar dis- and patients’ age, caring after a young mentally ill rela- order patients in Brazil (32.0 ± 19) and in caregivers of pa- tive was a predictor of the increasing burden of the stud- tients with schizophrenia in Iran (51.73 ± 18.23) [28, 29]. ied subjects. Young patients may have a more severe In contrast, the mean burden score was higher (64.51 ± form of mental illness and/or lack adequate vocational 12.97) among caregivers of patients with schizophrenia in and independent living skills which increases their care- South America [30]. However, the percentage of those ex- givers’ burden [33]. perienced moderate to severe or severe burden was similar Having higher affiliate stigma was associated with a to the current study (92.2%) [30]. significant increased level of burden of the studied sub- In this study, the male gender of the caregiver was a jects. This result conformes to a similar American study correlate of higher burden perception in linear regres- where there was a significant correlation between care- sion. A systematic review of gender differences in care- giving burden and affiliate stigma [34]. Similarly, having giving among family caregivers of people with mental higher associate stigma was significantly associated with illnesses concluded that gender difference in caregiving an increasing level of burden of the studied caregivers. Ebrahim et al. Journal of the Egyptian Public Health Association (2020) 95:31 Page 8 of 9 This result is in concordance with a cross-sectional sur- them to cope with the aggressive behavior of their men- vey among family members of people with a mental ill- tally ill relatives. A future national representative study ness in the USA where the perception of associate is recommended to explore the stigma and burden per- stigma was a significant predictor of greater psycho- ception among those caregivers and to compare the situ- logical distress [35]. ation between different Egyptian areas. Also, a The diagnosed type of mental illness was not associ- qualitative study is recommended to explore details of ated with caregivers’ burden or stigma. This finding is the caregivers’ experiences of stigma and caregiving consistent with different studies among Polish, German, burden. Austrian, Euro-American, and Sweden caregivers, where Abbreviations the overall caregivers’ burden and stigma were inde- WHO: World Health Organization; DSM-5: Diagnostic and Statistical Manual pendent of the type of mental illness [23, 36–38]. of Mental Disorders-Fifth Edition; CPMI: Stigma scale for Caregivers of People with Mental Illness; EMIC-Stigma scale: Explanatory Model Interview The pattern of seeking care for mental illness can Catalogue-stigma scale; ATMIQ: Attitude Toward Mental Illness Questionnaire; modulate the level of burden experienced by the care- USA: United States of America givers. Seeking traditional healers and non-psychiatric care from the start was a significant predictor of the Acknowledgements Not applicable higher level of burden of the studied subjects. This can be interpreted by the fact that seeking care through trad- Authors’ contributions itional healers and non-psychiatrists leads to delayed O.S contributed in the study design, collected, analyzed, interpreted the data, and prepared the main manuscript. G.S contributed in analyzing, treatment of the patients’ illness, so more problematic interpretation of the data, and revising the manuscript. R.H contributed in behavior and hence more burdens can be perceived [39]. the study design, interpretation of the data, and revising the manuscript. Unfortunately, traditional healers represent the highest D.M suggested the research problem and contributed in study design, analysis, interpretation of the data, and writing the manuscript. All authors percentage of the first consulted care providers in men- read and approved the final manuscript. tal illness in Egypt [12, 40, 41]. Most studied caregivers (80%) sought advice for the first time from traditional Authors’ information O.S is an assistant lecturer of Community, Occupational and Environmental healers for the care of their mentally ill relatives. This Medicine Department, Faculty of Medicine, Helwan University, Cairo, Egypt. finding is concordant with the results of other Egyptian G.S is a professor of Public Health and Community Medicine Department, studies. In Al Minia University Hospital, 86.8% of pa- Faculty of Medicine, Assiut University, Assiut, Egypt. R.H is a lecturer of Psychiatry, Neuropsychiatry Department, Faculty of Medicine, Assiut tients were treated by non-psychiatric medical and trad- University, Assiut, Egypt. D.M is a lecturer of Public Health and Community itional services before they sought psychiatric care [12]. Medicine Department, Faculty of Medicine, Assiut University, Egypt. In addition, 60% of outpatients attending Ain Shams University Psychiatric Clinic in Cairo have been trad- Funding The current study was not supported by any national or international itional healers before coming to psychiatrists [40]. Nearly institution or organization. three quarters (77.5%) of patients with schizophrenia in Ismailia have attended traditional treatment, and 59% of Availability of data and materials The data sets generated and analyzed during the current study are available them sought it as a first treatment choice [41]. from the corresponding author on reasonable request. 4.1 Limitations of the study Ethics approval and consent to participate The study is limited by its cross-sectional nature, which Approval to conduct the study was obtained before starting the data collection via the Ethical Review Committee of Assiut Faculty of Medicine inhibits a complete understanding of the causal relation- (IRB number was 17101177 and the date of approval was 19 December ship between determinants and caregiving outcomes. 2016). Official approval was obtained from the administrative authority in Due to the nature of the mental illness, the researchers Neurological and Psychiatric Hospital at Assiut University. Written informed consent was obtained from the study participants themselves prior to the applied a hospital-based study and used a purposive interview. For those who were illiterates, the written consent was signed in sampling technique, which limits the generalization of the presence of a witness. Privacy and confidentiality of all data were the findings to all family caregivers of the mentally ill in assured by ensuring the anonymity of the questionnaire, interviewing the participant separately in a closed room, and keeping data files in a safe the community. place. 5 Conclusions and recommendations Consent for publication Not applicable This study is one of the earliest studies in Upper Egypt that targeted family caregivers of mentally ill patients. 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