Abstract
Introduction
One of the biggest challenges to public health is increasing knowledge of the early warning signs (EWS) of bipolar disorder recurrence. The recurrence incidence is still high despite multiple attempts to improve the awareness level. The awareness level is still ambiguous and insufficient.
Objective
The purpose of this study was to assess the degree of awareness of EWS of bipolar disorder recurrence among patients and their main caregivers in Jordan.
Methods
A descriptive cross-sectional design was used to recruit 275 patients and their main caregivers to fill out the adapted version of the Awareness of the EWS of Relapse Questionnaire.
Results
The analysis showed that patients and their main caregivers’ awareness of the EWS of bipolar disorder recurrence was low and inadequate (patients, mean = 2.61 (SD = 2.6); main caregivers, mean = 3.84 (SD = 2.2); scores range from 0 to 10).
Conclusion
According to the study, the awareness level of these signs is still vague and inadequate. This means that ensuring long-term positive results for patients and their main caregivers requires a high degree of awareness regarding the warning signs and symptoms of bipolar disorder recurrence. To engage in standard practice, EWS of bipolar disorder recurrence awareness necessitate adequate resources, support, and an empowered and well-communicated multidisciplinary team.
Keywords
Introduction
Bipolar disorder is a serious mental disorder, affecting 46 million people worldwide (Dattani et al., 2021; WHO, 2022). Bipolar disorder produces significant mood swings, ranging from mania or hypomania episodes (heightened feelings) to depression episodes (lowered feelings). When a patient experiences a depressive episode, they may experience feelings of sadness or hopelessness, fatigue, confusion, and a loss of interest or pleasure in many activities. When a patient's mood switches to a mania or hypomania (a less severe form of mania) episode, they may experience extremes of happiness and joy, be full of energy, or become extremely irritated. These mood fluctuations may have an impact on one's capacity for clear thinking, judgment, behavior, energy, sleep, and activities (APA, 2022; Kessing et al., 2021). Bipolar recurrence is one of the most noticeable and upsetting symptoms of mental illnesses; it can lead to psychosocial problems that are extremely burdensome for patients and their main caregivers and can even be dangerous (Kargar et al., 2021). It has a connection with a higher risk of suicide (Miller & Black, 2020). Bipolar disorder is one of the most frequently diagnosed disorders in Jordan's mental health institutions, with major depressive disorder coming in second (WHO, 2020). In the Kingdom of Jordan, the incidence of bipolar disorder among the Jordanian population is stated to be 81,211 (0.8%), which is about 42,092 for males and 39,118 for females (WHO, 2020; Zuberi et al., 2021).
Understanding and recognizing warning signs of bipolar disorder recurrence to sustain patients’ remission is a crucial aspect of managing bipolar disorder patients in the mental health context (Bauer et al., 2018; Johansen et al., 2022). The research emphasized the responsibility of patients and their main caregivers to maintain a healthy lifestyle and preserve remission by knowing, detecting, and managing early warning signs (EWS) of bipolar disorder recurrence (McIntyre et al., 2022; Perlick et al., 2018). This may involve lowering the distress related to bipolar disorder symptoms, shortening the duration of a recurrence, eliminating loss of hope for recovery, encouraging patients to maintain their mental health, and aiding them in finding a satisfying way of life (Hafez Afefe Barakat & Mohammed Ibrahim, 2020). Depending on Jordanian tradition, one of the family members serves as the main caregiver, responsible for an individual who is unable to care for himself or herself (Alyafei et al., 2021). Consequently, awareness of EWS of recurrence for patients and their main caregivers is a significant step towards maintaining positive outcomes and improving the quality of care.
Review of Literature
A recurrence, called relapse, is commonly characterized as a state of regression, worsening, or deterioration and is thought to be the most common factor in the treatment results of serious mental illnesses like bipolar disorder (Ossola et al., 2020). Bipolar disorder recurrences have detrimental effects, including worsening symptoms such as interrupted sleep, increased appetite, racing thoughts, irritability, distraction, restlessness, agitation, risky decisions, altered energy levels, reality testing, fear, suspicion, or other uncomfortable feelings, as well as a declining capability to handle daily problems (APA, 2022; Andrade-González et al., 2020).
Bipolar relapse prevention is recognized as a primary therapy target by international recommendations and standards (Yatham et al., 2018). Despite the current treatment options, recurrence in bipolar disorder patients is still highly significant (Luciano et al., 2021). Worldwide, the annual rate of bipolar recurrence (relapse) is estimated to be between 30% and 50% (Di Florio et al., 2018; McIntyre et al., 2022). Because of good treatment settings, this prevalence falls between 15% and 20%. Additional efforts in psychosocial treatment may minimize the actual number of recurrences (Abu Sabra & Hamdan-Mansour, 2022; Garbi et al., 2021). More than half of patients reported a time lag of more than 1 month between the onset of warning signs and recurrence. Most patients and their main caregivers could identify changes in behavior preceding a bipolar recurrence if they were aware of EWS of bipolar recurrence (Inder et al., 2018; Vieta et al., 2018). Stated differently, if patients and their primary caregivers were aware of the EWS of bipolar recurrence, they would be able to recognize the behavioral changes that occur before a bipolar relapse.
Previous research in the United Kingdom discovered that mood monitoring and understanding the EWS of bipolar recurrence may be beneficial in lowering the risk of recurrence (Palmier-Claus et al., 2021). Another study undertaken by Ortiz and colleagues (2022) reported that understanding the dynamic changes in bipolar disorder may help to reduce potential recurrence. In Jordan, no studies have been conducted related to awareness, understanding, or recognition of the EWS of relapse among patients and their main caregivers with bipolar disorder. However, this gives the study significant value since it is a new topic in this field.
Patients and their main caregivers are likely to have limited knowledge of the EWS of bipolar recurrence (Johansen et al., 2022; Velentza et al., 2018). As a result, the primary sources for monitoring bipolar recurrence symptoms are patients’ and their main caregivers’ awareness. Unfortunately, the need for direct, regular, and timely communication with qualified professionals, as well as reliable and informative reminders of patients and their main caregivers, severely limits the effectiveness of these techniques (Abu Sabra et al., 2022). Because of this, keeping patients and their main caregivers aware of the EWS of bipolar recurrence is crucial to preserving positive outcomes and raising the standard of care. As a result, this study may aid patients and their main caregivers in becoming aware of EWS of bipolar recurrence. Therefore, the purpose of this study was to assess patients and their main caregivers’ awareness levels of the EWS of bipolar disorder recurrence in Jordan.
Methods
Design
A descriptive cross-sectional design was used to achieve the study purpose.
Setting
The target population for this study included all patients with bipolar disorder who were admitted to Jordan's only public mental health facility, as well as their main caregivers (family members). The National Center for Mental Health has 220 beds. In all of Jordan's mental health facilities, mood disorders and schizophrenia are the most often diagnosed mental illnesses. Psychiatric nurses and social workers were among the health professionals who participated in this study. The researchers, along with psychiatric nurses who work in departments, evaluated patients’ medical records to check eligibility criteria. Furthermore, following receipt of the list of eligible names, researchers and social workers from the units made contact with every patient as well as their main caregiver.
Sample
A convenient, non-probability sample was utilized to enlist study participants. Utilizing a 95% confidence interval (CI), 80% power, and a significance level of 0.05, the statistical power was computed. The estimated incidence of bipolar disorder in Jordan, which was obtained from the World Health Organization (2020), is estimated to be 81,211 (0.8%) of the population. This information was used to calculate the sample size. The sample size was calculated using the formula n = z2 pq/d2 based on those assumptions (Daniel & Cross, 2018). Where n is the sample size; z is the z-score of SD, which is equal to 1.96; p is the proportion; q is 1 minus p; and d is α. Using this calculation, the minimal number of participants needed to achieve statistical power was 245. To prepare for attrition and missing data, it expanded the sample size to 275 patients and their main caregivers.
Inclusion Criteria
Participant eligibility was based on four criteria: (1) age more than 18; (2) a verified medical diagnosis of bipolar disorder; (3) strong cognitive functioning as determined by the Mini-Mental State Examination, with a cut score of 23 or above; and (4) being living with the main caregivers because the study focused on the main caregivers, which are family members.
Instruments
The following instruments were used to gather data over 5 months, from March 2023 to July 2023:
A demographic questionnaire: Based on a literature review, the researcher created this questionnaire to fulfill the study's objectives. The demographic data collected by the questionnaire included the patients’ and their primary caregivers’ age, gender, educational level, marital status, place of residence, and type of main caregiver. We utilized an adapted version of the Awareness of the Early Warning Signs of Relapse Questionnaire to assess the level of awareness among patients and their main caregivers. It was modified by Abu Sabra et al. (2022). The original author of the 10-item Early Warning Signs Questionnaire was Spaniel and Motlova (2007). The modification of the Awareness of the EWS of Relapse Questionnaire provided ten items for patients and ten for their main caregivers, which were tailored to the Jordanian context. With the updated questionnaire, patients and their main caregivers rate the items of the questionnaire through mobile phone conversations using a three-point Likert scale that goes from “don't know” (0) to “yes” (2). In contrast to those who answer “yes,” the responses “no” and “do not know” will be condensed to indicate ignorance. The adapted questionnaire has good content validity, is internally consistent, and has a Cronbach's alpha of 0.85 for the patient's items and 0.73 for the primary caregivers’ items.
Data Collection Procedure
The data collection process began after ethical approval was obtained from the ethical committee at the University of Jordan and the targeted center's administration. The researchers gave the chief executive officer of the targeted center an explanation of the nature of the study, its objective, and all potential resources required. To confirm that the patients met the eligibility criteria for the study and were eligible, the researchers, along with psychiatric nurses who work in departments, evaluated their medical records. All patients and their main caregivers have been approached by the researchers in the presence of a facilitator (a social worker) at the unit after getting the list of eligible names and phone numbers of patients and their main caregivers. The researchers contacted the eligible patients and their caregivers via phone call to get the required electronic consent form and they were willing to participate after being given a brief explanation of the study. The data was gathered over the phone by the researchers themselves. The researchers are qualified to rate patients and their main caregivers because they are nurses with a PhD in mental health nursing and accreditation as a Clinical Nurse Specialist (CNS).
Statistical Analysis
Data analysis was carried out using IBM SPSS-23. As soon as the data were gathered, they were quickly input into SPSS to avoid missing any. After being cleaned, the data was examined for anomalies or missing information. To identify the outliers, a histogram, box plot, and scatter plot were employed. The study's variables and the participants’ demographics were described using descriptive statistics, such as the mean, standard deviation (SD), and percentiles. The study employed inferential statistics, such as analysis of variance, T-test, and chi-square, to investigate variations in the variables related to demographic data. For every test, a P-value of 0.05 was deemed significant.
Ethical Consideration
Before collecting data, Institutional Review Board (IRB) approval for the study's ethical conduct was obtained from The University of Jordan (1/2023/380) and the targeted center (2643). Data collection was done with the participants’ consent. Informed consent was requested from individuals to confirm that their participation was voluntary. Participants were told by the researchers that they might withdraw from the study at any moment. Additionally, all participant data was kept private and confidential in a closed file.
Results
Patients Demographics Characteristics
The total number of patients in this study was 275. The analysis revealed that 74.5% (n = 205) of them were males and 25.5% (n = 70) were females. The mean age of the patients was 31.1 years (SD = 8.2). In terms of marital status, the majority of patients (68%, n = 187) were single, followed by married patients (24.0%, n = 66) and divorced patients (8.0%, n = 22). In terms of educational attainment, 35.3% (n = 97) of patients have completed high school, 34.9% (n = 96) have completed university education, and 29.8% (n = 82) have completed primary school. In addition, all patients (n = 275) had resided with their own families. 52.4% (n = 144) of the patients lived in rural areas, while 47.6% (n = 131) did so in urban areas, as shown in Table 1.
Patients’ and their Main Caregivers Demographics Characteristics (N = 275).
M= mean; SD= standard deviation; n= number of participants; % = percentage.
Main Caregivers’ Demographics Characteristics
In this study, 275 main caregivers were included in the sample. According to the analysis, 20.7% (n = 57) of them were women and 79.3% (n = 218) of them were men. The primary caregivers were 55.5 years old mean (SD = 6.7). Concerning marital status, 85.5% (n = 236) of the main caregivers were married, with divorced main caregivers coming in second at 10.9% (n = 30) and widowed main caregivers at 3.3% (n = 9). Regarding educational attainment, among main caregivers, 45.8% (n = 126) have finished university, 43.6% (n = 120) have finished high school, and 10.5% (n = 26) have finished primary school. Regarding the type of main caregivers, fathers made up 65.1% (n = 179) of the total, followed by brothers 12.4% (n = 34); mothers 12.0% (n = 33); sisters 5.8% (n = 16); and other caregivers 4.7% (n = 13), such as wives and husbands, as shown in Table 1.
Assessment of the Level of Awareness of the EWS of Bipolar Disorder Recurrence
Patients’ Awareness Level
Recoding responses as “yes” (1), “no” (0), and “don't know” (0) yielded the overall score of the patient's awareness level. The study showed that the patients’ total awareness level received a mean rating of 2.61 (SD = 2.6), with a range of 0 to 10 scores. This suggests that the patient had little knowledge of the EWS's bipolar disorder recurrence. Regarding item analysis of patients’ awareness of the EWS of bipolar disorder recurrence, the highest proportion of awareness was reported for item 6, with 46.7% (n = 131). Following that, 42.5% (n = 117) of Item 9 and 34.9% (n = 96) of Item 5 were recorded. Conversely, the least amount of awareness was 2.2% (n = 6) in item 10 and 9.1% (n = 25) in item 7 (see Table 2).
Patients’ Awareness Level of Early Warning Signs of Bipolar Disorder Relapse (N = 275).
• Awareness total score was calculated after recoding responses as follows: Yes (1), No (0), Don’t know (0).
• Scores range from 0 to 10.
• Note: “worsen” refers to an alteration in patterns, either more or less.
Main Caregiver's Awareness Level
Recoding responses as “yes” (1), “no” (0), and “don't know” (0) yielded the overall awareness level score for the main caregiver. The analysis showed that the main caregiver's overall awareness level received a mean rating of 3.84 (SD = 2.2), with a range of 0 to 10 scores. This indicates that the primary caregivers were not sufficiently aware of the EWS of a bipolar disorder recurrence. As per the results of an item analysis conducted on the knowledge of the main caregiver regarding the EWS of bipolar disorder recurrence, items 7 and 9 exhibited the highest awareness percentage of 80.0% (n = 220). This was followed by the recording of 49.8% (137) of the answers to Item 8. Conversely, the items with the lowest awareness percentages were numbers 6 (12.4%; n = 34), 3 (6.9%; n = 19), and 10 (2.2%; n = 6) (see Table 3).
Main Caregivers Awareness Level of Early Warning Signs of Bipolar Disorder Relapse (N = 275).
• Awareness total score was calculated after recoding responses as follows: Yes (1), No (0), Don’t know (0).
• Scores range from 0 to 10.
• Note: “worsen” refers to an alteration in patterns, either more or less.
Comparing Awareness Level Between Patients and Their Main Caregivers
To determine the correlation and mean difference for the awareness levels of the main caregivers' and patients' of the EWS of bipolar disorder recurrence. The analysis found a significant correlation (r = .73, p < . 05) and significant mean differences (t = −10.94, p = .000) between patients’ awareness and compatibility with their primary caregivers.
Variations Across Demographic Characteristics
The following was shown by the evaluation of variations in the awareness total score of patients and main caregivers across various demographic variables:
The patients’ age and awareness total score did not significantly correlate (r = .059, p = .333). However, there were significantly positive correlations (r = 0.191, p = .001) between the age of main caregivers and their awareness total score. Regarding changes in the awareness total scores of patients (t = 0.413, df = 273, p = .680) and primary caregivers (t = −.749, df = 273, p = .455), there were no statistically significant differences between the male and female participants. The patients’ awareness total score and their marital status (single, married, divorced, and widowed) did not differ significantly [F (2,272) = 0.023, p = .977]. Additionally, there were no statistically significant differences in the awareness total score of main caregivers based on their marital status (married, divorced, widowed, or single) [F (2,272) = 1.289, p = .277]. The patients’ awareness total score and their level of education (primary school, high school, and university) differed significantly [F (2,272) = 14.09, p = .000]. However, there were no statistically significant differences between the awareness total score and the educational level of the primary caregivers (primary school, high school, and university) [F (2,272) = 0.460, p = .632]. The awareness total score of the patients showed a significant difference depending on whether they lived in an urban or rural area (t = 3.71, df = 273, p = .000). The awareness total score differed significantly depending on the type of main caregiver (father, mother, brother, sister, and others) [F (4,270) = 2.38, p = .05].
Discussion
Maintaining sufficient knowledge and awareness is one of the most crucial things patients and their main caregivers can do to lower the likelihood of recurrences (Bond & Anderson, 2015; Hubbard et al., 2016). The current study discovered that patients and main caregivers had low and inadequate awareness of the EWS of bipolar disorder recurrence. Furthermore, this study discovered that the awareness levels of patients and their main caregivers are correlated and very comparable, with significantly similar scores on the awareness scale. Thus, the patients’ and their main caregivers’ awareness of recurrence signs and symptoms was almost the same. In order to fill these awareness gaps, comprehensive psychoeducational interventions should be offered that focus on medication adherence, lifestyle self-management through interactive exercises including role-playing, active life coaching, short video exercises, and thankfulness lists, as well as physical, psychological, and social stabilizing (Al-Ghabeesh et al., 2013; Saraf et al., 2021; Soo et al., 2018; Vieta et al., 2018). Previous study suggests that poor adherence to psychoeducational therapies is linked to low awareness (Karadağ et al., 2019). Increased awareness among patients and main caregivers is regarded to be significant for the efficiency of psychoeducational interventions (Látalová, 2012; Leclerc et al., 2013). In other words, post-discharge psychoeducational interventions should be well-designed and structured to help patients and primary caregivers achieve treatment and management goals.
This study emphasizes the importance of improved awareness levels regarding EWS of bipolar disorder recurrence for patients and their main caregivers, who are assumed to be poorly recovered due to low and inadequate awareness of the EWS of bipolar disorder recurrence. Therefore, improved awareness allows for minimizing re-hospitalization, reducing the burden on main caregivers (family members), and moving care from inpatient to outpatient settings, boosting the role of primary and rehabilitative mental health professionals. The current study findings agree with Vieta et al. (2018), who reported that patients and their main caregivers had limited awareness levels of their disease and could not describe EWS of bipolar disorder recurrence. Goossens et al. (2010) have also supported the current finding about recognizing early signs of manic or depressive recurrence, who reported that patients and their relatives had inadequate awareness levels. This consistency between the Goossens et al. (2010) study and this study's findings might be interpreted in terms of similarities between the two studies in the sample size and methodology. Both studies recommended that early intervention through comprehensive psychoeducational interventions be considered a vital stone in improving the level of awareness regarding EWS of bipolar disorder recurrence for patients and their primary caregivers.
A previous qualitative review found that most bipolar disorder patients can notice the EWS of recurrence, depending on their level of awareness (Latalova et al., 2012). In other words, if patients do not have a high level of awareness, they will be unable to notice early signs of bipolar recurrence. This outcome is consistent with the current study's findings. Other qualitative investigations revealed that low awareness predicts poor treatment adherence and dropout, as well as an elevated relapse rate (Crowe & Inder, 2018; Johansen et al., 2022). A recent comprehensive review and meta-analysis found that patients with bipolar disorder have a high recurrence rate. To reduce the recurrence rate, patients and main caregivers must understand the EWS of recurrence (Kessing et al., 2018). As a result, while the recurrence incidence remains high, awareness of the EWS of recurrence is poor and inadequate. This finding is consistent with the current study.
Considering gender differences, the current study found that there were no significant differences between male and female participants regarding changes in patients and their main caregivers’ awareness total scores. This result was in agreement with previous research. For example, Diflorio & Jones (2010) found no significant gender differences in the same rate of recurrence in bipolar disorder in men and women. The other researchers (Morriss et al., 2007; Mohamed Moura & Ata Abd El-Salihen, 2016; Sharma et al., 2016) also found no differences in awareness levels between male and female patients and their main caregivers with bipolar disorder. Nevertheless, during the time of data collection for this study, there were more male patients than female patients.
In general, the level of awareness among patients and their main caregivers regarding the EWS of bipolar disorder recurrence was considered vital. The current study findings support the results of the existing body of literature about the connection between the level of awareness and bipolar recurrence. This suggests that using appropriate psychoeducational intervention could successfully and effectively influence the awareness of patients and their primary caregivers regarding EWS of bipolar recurrence and enhance patients’ remission.
Limitations and Recommendations
One limitation of this study was the absence of a control group. The absence of interventions studies for evaluating patients and their main caregivers’ awareness levels before and after interventions was a further limitation. Thus, to detect more accurate levels of knowledge of the EWS of bipolar recurrence for patients and their main caregivers, future studies could include an interventional or longitudinal research design for at least a year. This study recommends that policymakers and executive hospital administrations develop a progressive education and supervision system to integrate awareness of early relapse warning signs into routine therapy and the importance of multidisciplinary assistance for effective outcomes.
Study Implications for Practice, Education, and Research
The EWS of bipolar disorder recurrence awareness in clinical settings necessitate adequate facilities, supportive leadership, and a cohesive, empowered, and effectively communicating multidisciplinary team. Consequently, the results of this study highlight the necessity of integrating awareness of early relapse warning signs into routine treatment and the importance of multidisciplinary assistance for effective outcomes. Through the inclusion of the EWS of bipolar disorder recurrence in the curriculum, the findings of this study may be utilized to improve faculty education in the future. The present study offers empirical support for the notion that mental health facilities should be cognizant of the EWS of bipolar disorder recurrence. This research may add to the increasing amount of information about early signs of bipolar disorder recurrence.
Conclusion
This study focused on assessing patients and their main caregivers’ awareness levels of EWS of bipolar disorder recurrence. The study revealed how low and inadequate patients’ and their main caregivers’ knowledge and awareness of the EWS of bipolar disorder recurrence. Thus, the awareness level of EWS of bipolar recurrence could have an impact on patient outcomes and recurrence rate. Furthermore, the study found no statistically significant differences in the awareness total score of patients and their main caregivers concerning age, gender, and marital status. However, there were noticeable and statistically significant differences in the type of main caregiver, place of residence, and educational level.
Supplemental Material
sj-docx-1-son-10.1177_23779608241299271 - Supplemental material for The Assessment of Awareness of Early Warning Signs of Bipolar Disorder Recurrence Among Patients and Their Main Caregivers in Jordan
Supplemental material, sj-docx-1-son-10.1177_23779608241299271 for The Assessment of Awareness of Early Warning Signs of Bipolar Disorder Recurrence Among Patients and Their Main Caregivers in Jordan by Mohammad A. Abu Sabra, Salam Bani Hani and Raid Abu Jebbeh in SAGE Open Nursing
Supplemental Material
sj-doc-2-son-10.1177_23779608241299271 - Supplemental material for The Assessment of Awareness of Early Warning Signs of Bipolar Disorder Recurrence Among Patients and Their Main Caregivers in Jordan
Supplemental material, sj-doc-2-son-10.1177_23779608241299271 for The Assessment of Awareness of Early Warning Signs of Bipolar Disorder Recurrence Among Patients and Their Main Caregivers in Jordan by Mohammad A. Abu Sabra, Salam Bani Hani and Raid Abu Jebbeh in SAGE Open Nursing
Footnotes
Author Contributions
MAAS: conceptualization and writing the draft of the paper. SBH: data analysis and drafting the paper. MAAS: methodology. RAJ: editing. MAAS & SBH& RAJ: drafting and editing.
Data Availability
The corresponding author can provide the datasets for this work upon reasonable request, however they are not publicly available due to confidentiality restrictions.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethics Approval and Consent to Participate
Ethical approvals were obtained from the Institutional Review Board (IRB) of The University of Jordan (No.1/2023/380) and the National Center for Psychiatry (No.2643) prior data collection. Informed consent was obtained from all participants.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
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References
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