The American Psychiatric Association (APA; 2013) describes trauma as any life event that incorporates actual or threatened death or injury that distresses and overwhelms an individual. When stress results from trauma it is usually referred to as “traumatic stress,” which is assumed to cause severe consequences, causing significant biopsychological effects on traumatized victims, including posttraumatic stress disorder (PTSD). PTSD has a wide range of symptoms, such as disturbing thought processes, feelings, and behavior, and other manifestations of psychological, mental, and physical distress related to traumatic events. Having a family member with psychological disorders, such as schizophrenia or bipolar disorder, may put all family members at risk for PTSD (APA, 2013).
The World Health Organization (2016) has estimated that 50% to 90% of individuals with schizophrenia or bipolar disorder reside with their families, largely as a result of deinstitutionalization trends. The Jordanian Ministry of Health (2018) reported that 305 per 100,000 individuals with schizophrenia and bipolar disorder are out-patients. Accordingly, these patients spend much of their time at home accompanied by their families (Kizilirmak & Küçük, 2016), potentially exacerbating families' social, emotional, and financial burden (Pernice-Duca, Biegel, Hess, Chung, & Chang, 2015; von Kardorff, Soltaninejad, Kamali, & Eslami Shahrbabaki, 2016). This burden may reciprocally affect patients and caregivers if the latter are left without appropriate professional assistance. Masa'Deh (2017) reported that family caregivers of individuals with mental illness in Jordan faced high stress levels caused by the diagnosis and symptoms accompanying the diagnosis.
Family members are the most common caregivers for individuals with schizophrenia or bipolar disorder (Fredman, Baucom, Boeding, & Miklowitz, 2015), and a significant portion of their time is consumed by caring for their relatives, including assisting them with basic life functions and activities of daily living (Mulud & McCarthy, 2017). Moreover, family caregivers need to supervise individuals' compliance with medication, help them in their self-care activities, and protect them from harm (Sharma, Chakrabarti, & Grover, 2016). In addition, family caregivers are exposed to various forms of physical and verbal abuse, especially if the individual experiences acute psychotic symptoms (Kageyama et al., 2015). Regardless of the risk to families, and related economic constraints and limited societal support, the family home is generally considered the most suitable environment in which to care for individuals with mental illness (Perlick et al., 2016; Sharma, Sharma, & Sharma, 2017).
Burden of care has been linked to psychological trauma, stress, and PTSD among family caregivers of individuals with schizophrenia or bipolar disorder (Kingston, Onwumere, Keen, Ruffell, & Kuipers, 2016). It has been reported that 42.3% of family caregivers of individuals with severe mental illness are at high risk of psychological trauma and PTSD (Miyagi, Toyosato, Takahara, & Yokota, 2014). In another study, more than one half of family caregivers with experience of being physically abused by their care recipients reported being psychologically distressed, which was exacerbated in contexts of low household income, family stigma, and increasing care recipient age (Kageyama et al., 2016). This finding implies that family caregivers of individuals with severe mental illness, such as schizophrenia and bipolar disorder, are at increased risk of PTSD, and this risk increases with social and economic problems and the severity of ill relatives' conditions.
One significant factor that is linked to individuals' mental and physical well-being and assumed to buffer life stressors is perceived social support from family (Heinze, Kruger, Reischl, Cupal, & Zimmerman, 2015; Lu et al., 2015). Previous reports emphasized the role of social support in lowering risk of PTSD and improving quality of life (Carter et al., 2016). High level of perceived social support has a significant role in improving resilience, as well as contributing to lower symptoms of PTSD (Painter, Gray, McGinn, Mostoufi, & Hoerster, 2016). In Arab cultures, such as in Jordan, social support is considered one of the main social norms. Individuals may experience social ostracism and blame if a family member is sick and perceived to be neglected by family members, including extended family. This stigma is underpinned by religious and cultural beliefs and behaviors that oblige family members to take care of their ill relatives, regardless of social, economic, or psychological costs (Ghannam, Hamdan-Mansour, & Al Abeiat, 2017). Therefore, investigating the role of social support among family caregivers of individuals with schizophrenia or bipolar disorder, which are highly demanding chronic illnesses, is one way to understand caregiver needs.
In Jordan, limited evidence is available that addresses risk of PTSD among family caregivers of individuals with mental illness. The only two national studies showed that family caregivers of individuals with serious mental illness reported high levels of stress, burden, ineffective coping, and personality disturbances (Ghannam et al., 2017; Masa'Deh, 2017). However, the role of social support and its impact on the physical and mental well-being on family caregivers of individuals with schizophrenia or bipolar disorder has never been discussed, particularly its association with risk of PTSD among family caregivers. Therefore, the purposes of the current study were to: (a) assess risk of PTSD in family caregivers of individuals with schizophrenia or bipolar disorder in Jordan; and (b) examine the relationship between perceived social support and risk of PTSD among those family caregivers.
A quantitative cross-sectional descriptive correlation design was used to gather self-reported data.
Jordan comprises three main administrative districts: North, Center, and South. According to the Jordanian Department of Statistics (2017), the population of the Center is estimated to comprise 63.5% of the national population. Family caregivers in the current study were recruited from governmental, private, and educational outpatient clinics in mental health institutions in the Center district of Jordan.
Sample and Sampling
Multistage sampling technique was used. First, 20 outpatient clinics were selected using simple random sampling techniques; the researcher then used a non-random consecutive sampling method to collect family caregivers from the selected outpatient clinics. All individuals who presented at any of the selected outpatient clinics during the data collection period were approached conveniently (i.e., between September 20, 2017 and February 20, 2018). Individuals who met the following criteria were eligible to be included in the study: (a) age >18 years; (b) involved with daily care provision; (c) with the individual for >5 hours per day; and (d) providing care for individuals with schizophrenia or bipolar disorder who are their first- and second-degree relatives. Family caregivers using medication to treat their own mental illness were excluded.
Sample size was calculated using G*power software (Faul, Erdfelder, Lang, & Buchner, 2007). Taking into consideration the statistical tests used in the study, and the need for power of 0.80 and a level of significance of 0.05, 276 family caregivers were sufficient to determine statistically significant results; thus, data were analyzed from 300 family caregivers.
Before starting data collection, ethical approval was obtained from the Ethical and Scientific Committee of the School of Nursing, Deanship of Academic Research, Institutional Review Board at the University of Jordan and the targeted institutions. The study caused no harm to participants, who were fully informed regarding the privacy and confidentiality of the study. Participants were also informed that all information related to the study was for research purposes only, and no one other than the researcher could access the information. The questionnaires did not include participant names or personal information. Completed questionnaires were stored for 3 years in a locked cabinet at the researcher's office in the School of Nursing. Family caregivers were informed that participation was voluntary, and that they were free to withdraw from the study at any time without any influence on the quality of care provided and without any obligations.
A consent form, which explained the title and purpose of the study, was obtained from each participant. The consent form also informed participants why they were chosen to participate in the study and the potential benefits. By signing the consent form, participants declared that everything was explained to them and that they willingly agreed to participate.
Data Collection Procedure
The researcher visited the targeted institutions and informed administrators about the purpose, significance, and expectations of the study, subsequent to which their permission was obtained prior to conducting any field work. The researcher then approached family caregivers during their routine clinical visits and explained the nature of the study. The researcher gave a full description about the study to those who expressed interest in participation and informed them about their right of voluntary participation, anonymity, confidentiality, and right to withdraw at any stage. Family caregivers were given the chance to ask questions. A package including a cover letter, consent form, and questionnaire in Arabic was given to participants. A private room was assigned by the institution in the selected clinics for collecting data from family caregivers.
PTSD Checklist for DSM-5 (PCL-5). According to the National Center for PTSD, the PCL-5 has a variety of purposes, including screening individuals for risk of PTSD. The PCL-5 is a self-reported measure that can be completed within 5 to 10 minutes by family caregivers (Weathers et al., 2013). The instrument includes 20 items that correspond to the 20 symptoms of PTSD listed in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The respondent for the tool indicated the extent to which they have been annoyed by the symptoms over the past 1 month, with a severity rating scale ranging from 0 to 4 (0 = not at all to 4 = extremely). The PCL-5 total score ranges from 0 to 80, with a cutoff point of 33; higher scores indicate higher risk of PTSD (Blevins, Weathers, Davis, Witte, & Domino, 2015). The Arabic version of the PCL-5 (APCL-5) was used in the current study.
Previous studies showed good validity and excellent internal consistency of the PCL-5 and reported Cronbach's alpha coefficients between 0.94 and 0.96 (Blevins et al., 2015; Wortmann et al., 2016). The instrument was previously translated into Arabic language and used in Arabic populations and has been demonstrated to show good validity and internal consistency, with a Cronbach's alpha of 0.85 (Ibrahim, Ertl, Catani, Ismail, & Neuner, 2018).
Multidimensional Scale of Perceived Social Support. The Multidimensional Scale of Perceived Social Support is a 12-item scale used to measure perceived social support (Zimet, Dahlem, Zimet, & Farley, 1988). Each item is scored on a 7-point Likert scale, ranging from 1 = very strongly disagree to 7 = very strongly agree. Higher scores indicate higher perception of social support. The total scale is calculated by adding the 12 items and dividing the sum by 12. A mean total score ranging from 1 to 3 is considered low support; a score of 3.1 to 5 is considered moderate support; and a score of 5.1 to 7 is considered high support. The Arabic version of the scale was used in the current study, as it was previously used in Arabic language and showed good internal consistency, with a Cronbach's alpha of 0.74 (Aroian, Templin, & Ramaswamy, 2010).
Sociodemographic Characteristics Checklist. This checklist contains two parts: (a) information related to family caregivers, including, age, gender, marital status, educational level, employment, and relationship with the patient; and (b) information related to the patient, such as age, gender, marital status, educational level, employment, marital status, and diagnosis. Questions were sourced from a review of the literature, and family caregivers answered both parts.
The study was pilot tested to estimate recruitment rate and check applicability of the entire process. Thirty participants were included, and because there was no change to the questionnaires and process, these participants were also included in the final analysis.
SPSS version 25 was used to analyze the quantitative data, which were entered after the researcher coded the data. Data were screened for missing data and outliers. Parametric assumption of normal linearity and homogeneity of variance were checked for the main study variables. A significance level of p < 0.05 was considered statistically significant, and two-tailed tests were used in all statistical analyses.
Descriptive statistics were computed to describe the characteristics of family caregivers, including their risk of PTSD and level of perceived social support. The relationship between risk of PTSD and perceived social support was examined using Pearson product-moment correlation coefficient (r). In addition, one-way analysis of variance (ANOVA) was the most appropriate statistical method to investigate the differences in PTSD according to the different levels of perceived social support. Effect size was calculated, whereby 0.01 is considered a small effect size, 0.06 a moderate effect size, and 0.14 a large effect size (Pallant, 2016).
A total of 327 caregivers were approached by the researcher, 300 of whom fully completed and returned the questionnaires, forming a response rate of 91.7%. Participant age ranged from 18 to 81 years. The majority (61.3%) of caregivers were female, and 37% had less than a high school level education. Most caregivers were married (77.3%) and approximately one half (47.8%) were unemployed. Most caregivers (51%) were parents (i.e., mother or father), and one was a father-in-law (Table 1).
Patient age ranged from 15 to 75 years, and 58.3% were male. Approximately 62% of patients had less than a high school level education. Approximately two thirds of patients were single, 81% were unemployed, and 76% had schizophrenia (Table 1).
Risk of PTSD in Family Caregivers
According to the APCL-5, caregivers' mean risk of PTSD was 46.1 (SD = 12.6), indicating that family caregivers were at high risk of PTSD.
Relationship Between Risk of PTSD and Perceived Social Support
The relationship between risk of PTSD and perceived social support was investigated using Pearson product-moment correlation coefficient. There was a medium negative correlation between the two variables (r = −0.413, p < 0.001). High level of risk of PTSD in family caregivers was associated with lower level of perceived social support.
A one-way ANOVA was conducted to explore differences of risk of PTSD related to level of perceived social support among family caregivers. A statistically significant difference in risk of PTSD was related to level of perceived social support (F1, 3 = 26.43, p < 0.001) (Table 2). Effect size was calculated as η2 = 0.15, indicating a large effect size. Table 2 also presents the post-hoc comparisons using the Tukey HSD test, indicating that the mean score of the risk of PTSD for low social support (50.96 [SD = 11.93]) was significantly different from moderate social support (43.58 [SD = 11.16]) and high social support (35.72 [SD = 12.53]). The results show that low perceived social support is associated with higher risk of PTSD.
Risk of Posttraumatic Stress Disorder (PTSD) According to Level of Perceived Social Support
Risk of PTSD in Family Caregivers
Findings of the current study show that family caregivers are at risk of PTSD, which is consistent with previous research (Blevins et al., 2015) that has consistently reported psychological stress and PTSD as particular risks among caregivers of individuals with mental illnesses (Kingston et al., 2016; Masa'Deh, 2017). Miyagi et al. (2014) investigated risk of PTSD among family caregivers of individuals with schizophrenia and showed that approximately one half were at high risk of PTSD. Moreover, an investigation of the prevalence of posttraumatic stress symptoms in family caregivers of individuals with psychosis reported that approximately 50% of participants were at risk (Kingston et al., 2016).
Kageyama et al. (2016) investigated the relationship between violence and psychological distress in parents of individuals with schizophrenia in Japan. The study showed that more than one half of parents reported high levels of distress caused by problematic behaviors, functional instability, severity of symptoms, and aggressive behavior. A literature review using systematization of information and frequency analysis to explore care burden among caregivers of individuals with mental illness showed that the demanding caring process was the underlying main cause of stress and burden (Caqueo-Urízar et al., 2014). The findings of the current study support previous research conducted in Jordan (Masa'Deh, (2017), which showed that family caregivers of individuals with mental illnesses are highly stressed, putting them at increased risk of PTSD. Masa'Deh (2017) highlighted the need for future research examining predictors of and buffers for PTSD in family caregivers.
Being a family caregiver of an individual with schizophrenia or bipolar disorder is stressful and renders family caregivers vulnerable to PTSD. Severity of the diagnosis, the potentially aggressive behavior of the ill relative, the demanding caring process, illness-related stigma, and lack of social support are in many cases major stressors for family caregivers.
Relationship Between Risk of PTSD and Perceived Social Support
In line with the stress and coping theory (Lazarus & Folkman, 1984), the findings of the current study showed a negative relationship between risk of PTSD and perceived social support in family caregivers of individuals with schizophrenia or bipolar disorder. Perceived social support had a great role in reducing family caregivers' risk of PTSD. Many studies reported negative correlations between perceived social support and caregivers' level of stress in caring for individuals with various mental illnesses and critical and chronic diseases (Dyb & Olff, 2014; Iseselo, Kajula, & Yahya-Malima, 2016; Liu, Zhang, Jiang, & Wu, 2017). The relationship between perceived social support and risk of PTSD has been well investigated in the literature in various situations (Crevier, Marchand, Nachar, & Guay, 2015; Dai et al., 2016; Gros et al., 2016). A study investigating the impact of perceived social support on risk of PTSD among Veterans emphasized that social support was associated with lower risk of PTSD and moderated the association between PTSD and severity of depression symptoms (Painter et al., 2016). A study investigating posttraumatic stress reactions among massacre survivors in Norway reported that social support was highly and significantly associated with reduction of reaction prevalence and severity (Dyb et al., 2014).
Regarding caregivers of individuals with mental illnesses, the association between stress level and perceived social support was investigated. Perceived social support in the current study acted as a stress buffer and decreased risk of PTSD. A study conducted in Malaysia reported that caregivers' high levels of burden and stress were associated with lack of social support. The study also confirmed that perceived social support by caregivers was a significant factor contributing to decreased caregiver burden and stress levels during the caregiving process for individuals with mental illness (Mulud & McCarthy, 2017). Similarly, Iseselo et al. (2016) investigated psychosocial stress, social support, and coping among family caregivers of relatives with mental illnesses in Tanzania and found that higher stress levels were associated with lower social support. Family caregivers expressed lack of social support inside and outside the family, and reported that the severity of patient symptoms increased distance between them and their social environment; however, due to the cultural influence and nature of family bonds in Arabic culture, the availability and access to support systems might be better compared to other cultures.
The current study used a cross-sectional design and included family caregivers of individuals with schizophrenia or bipolar disorder. Including individuals with other mental illnesses may add to the strength of the study. In addition, evaluating caregivers' coping mechanisms may be necessary when studying PTSD and social support.
Recommendations and Implications
Mental health professionals must be aware that family caregivers of individuals with schizophrenia or bipolar disorder are at risk of PTSD. Psychiatric nurses can provide professional support and act as educators for family caregivers. This support is expected to reduce burden and help with development of healthy coping strategies. In addition, stakeholders in health care settings play an important role in directing the regulations of nursing practice toward achieving high-quality care for patients as well as family caregivers. There is a need to launch a new policy that incorporates formal support to family care-givers as an essential part of the holistic treatment plan. Moreover, the results of the current study could be used as a baseline for future studies assessing PTSD risk and the effect of social support on this risk. Future research should focus on implementing and evaluating a support program for family caregivers. Decreasing stress levels for family caregivers should positively affect the quality of care delivered to patients and improve their quality of life, thus manifesting optimum care provision for all users from a health system perspective.
Family caregivers of individuals with mental illnesses, particularly schizophrenia and bipolar disorder, are the core of the support system for such individuals in Jordan and the Middle East in general. In the absence of adequate mental health infrastructure, family caregivers may have multiple roles in providing care for their ill relatives. The caring process is demanding and highly stressful, putting family caregivers at risk of PTSD. Thus, social support is crucial in decreasing the risk of PTSD.
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|Family Caregivers (N = 300)||Patients (N = 300)|
| Male||116 (38.7)||175 (58.3)|
| Female||184 (61.3)||125 (41.7)|
|Level of education|
| Less than high school||111 (37)||187 (62.3)|
| High school||79 (26.3)||83 (27.7)|
| Diploma||67 (22.3)||12 (4)|
| Bachelor's degree||41 (13.7)||17 (5.7)|
| Postgraduate degree||2 (0.7)||1 (0.3)|
| Single||43 (14.4)||170 (56.7)|
| Married||232 (77.3)||87 (29)|
| Widow||15 (5)||6 (2)|
| Separated||10 (3.3)||37 (12.3)|
| Full time||101 (33.7)||13 (4.3)|
| Part time||17 (5.7)||33 (11)|
| Unemployed||143 (47.76)||243 (81)|
| Retired||39 (13)||11 (3.7)|
|Relationship with patient|
| Parent||155 (51.7)|
| Sibling||79 (26.3)|
| Husband or wife||36 (12)|
| Son or daughter||29 (9.7)|
| Second-degree relative||1 (0.3)|
| Schizophrenia||228 (76)|
| Bipolar||72 (24)|
|Mean (SD) (Range)|
|Age (years)||36.7 (13.4) (18 to 80)||33.3 (14.4) (15 to 75)|
|Risk of PTSDa||46.1 (12.6) (0 to 80)|
Risk of Posttraumatic Stress Disorder (PTSD) According to Level of Perceived Social Supporta
|Level of Perceived Social Support||p Value||Mean Difference in Risk of PTSD|