|Year : 2018 | Volume
| Issue : 2 | Page : 196-204
Resilience, burden, and quality of life in Egyptian family caregivers of patients with schizophrenia
Souzan Abd El-Menem Abd El-Ghafar1, Amal A Abd El-Nabi2, Hosam El-Din Fathalla3
1 Psychiatric and Mental Health Nursing, Faculty of Nursing, Tanta University, Tanta, Egypt
2 Psychiatric Nursing and Mental Health, Faculty of Nursing, Damanhour University, Damanhur, Egypt
3 Neuro-psychiatry, Faculty of Medicine, Tanta University, Tanta, Egypt
|Date of Web Publication||12-Nov-2018|
Souzan Abd El-Menem Abd El-Ghafar
Department of Psychiatric and Mental Health Nursing, Faculty of Nursing, Tanta University, Tanta
Source of Support: None, Conflict of Interest: None
Background Caring for mentally ill patients affects the family caregivers’ physical and mental health, which leads to enormous burdens. Consequently, family caregivers need resilience to help relieve these burdens and regain their quality of life.
Objective The present study was designed to assess the levels of resilience, burden, and quality of life among family caregivers of patients with schizophrenia and their relationships.
Settings The study was conducted at the psychiatric outpatient clinic of Mental Health Hospital in Tanta City (which is affiliated to General Secretariat of Mental Health) and psychiatric outpatient clinic affiliated to Tanta University.
Design A descriptive correlational design was used in the study.
Patients and methods A convenient sample of family caregivers of patients with schizophrenia (N=109) was recruited.
Tools Connor-Davidson Resilience Scale, Burden of Care Inventory, and the WHO Quality of Life Scale were used.
Results The present study indicated a significant positive correlation between resilience level and quality of life. On the contrary, caregiving burdens were negatively correlated with both resilience and quality of life. Moreover, family caregivers have moderate level of resilience, and approximately two-thirds of them have poor overall quality of life and experiencing moderate to severe burden.
Conclusion The present study concluded that decreasing family caregivers’ burden and enhancing their quality of life are imperative. This can be done by emphasizing the significant role of resilience.
Recommendations A rehabilitation program and ongoing family interventions should be established for family caregivers to enhance their resilience and consequently to decrease their burdens and improve their quality of life.
Keywords: caregiving burden, family caregivers of schizophrenia, quality of life, resilience
|How to cite this article:|
Abd El-Ghafar SA, Abd El-Nabi AA, Fathalla HE. Resilience, burden, and quality of life in Egyptian family caregivers of patients with schizophrenia. Egypt Nurs J 2018;15:196-204
|How to cite this URL:|
Abd El-Ghafar SA, Abd El-Nabi AA, Fathalla HE. Resilience, burden, and quality of life in Egyptian family caregivers of patients with schizophrenia. Egypt Nurs J [serial online] 2018 [cited 2018 Dec 17];15:196-204. Available from: http://www.enj.eg.net/text.asp?2018/15/2/196/245112
| Introduction|| |
Before deinstitutionalization and advances in the development of medications, patients with schizophrenia lived in institutions away from their families. Today, these patients live in our communities (Kohn-Wood and Wilson, 2005; Wynaden et al., 2006). As a result of deinstitutionalization, the role of family caregivers has gained its importance (Vella and Pai, 2013). Family caregivers have to take care of the patient’s psychological, medical, financial, and social needs along with their own personal needs. This has led to profound burdens for family caregivers (Chan, 2011; Kaushik and Bhatia, 2013; Kate et al., 2013; Hsiao and Tsai, 2014).
A burden on the family is defined as physical, psychological, and social effects on family caregivers of those having chronic disorders (Zahid and Ohaei, 2010). A discrepancy has been suggested between objective and subjective burden. Objective burden of care is the observable aspects of the burden, which involves disturbing patient behaviors, economic problems, and daily restrictions imposed on caregivers. It involves the negative effect of the illness on caregivers physical and mental functioning. On the contrary, subjective burden of care refers to the level at which family members feel uncomfortable with these problems (Awad and Voruganti, 2008).
Tasks and responsibilities of caring for patients with schizophrenia can have positive and negative effects on the quality of life of family caregivers (Greenberg et al., 2000). Meeting the challenges of caregiving can provide them with a sense of satisfaction, and many families are able to identify the strengths that they have developed through their experiences. On the contrary, family members can feel a lot of burden and stress that can compromise not only their own health and quality of life but the caregiving quality as well (Fleming et al., 2006; Quah, 2014).
WHO defines quality of life as the individual’s awareness of their life in the perspective of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns. It consists of physical health, psychological health, social relations, and environmental domains (WHOQoL Group, 1993). The caregiver’s quality of life was negatively influenced by emotional, physical, and economic distress as a result of many unfulfilled needs such as lack of leisure time and compensation of patient functioning in family. Moreover, quality of life may be also affected by the burden of care, absence of social support, course of the disorder, and problems within the family members (Urizar et al., 2009).
Caregiver burden can be considered as an adversity, and caregivers who display resilience are commonly the ones who live and adjust well to this adversity (Abdul-Mulud and McCarthy, 2017). Resilience is a dynamic process in which the individual exhibits adaptive skills despite experiencing major disturbing adversity (Wilks and Croom, 2008; Windle et al., 2011). It is a strength within the individual that enhances psychological health and positive development in the face of adversity, trauma, threats, or stress (Nahar and van der Geest, 2014). Two main characteristics must be present in resilience, which are adversity and positive adaptation (Gillespie et al., 2007; Fletcher and Sarkar, 2013). Definition of resilience in family caregivers differs. It entails more than overcoming difficulties and to survive the daily burden of caring for a family member with psychiatric disorder. It involves the potential for personal and relational transformation and growth into a stronger, more flexible, and healthier person (Van Breda, 2001; Gillespie et al., 2007).
A person’s resilience is influenced by a balance between risk and protective factors when confronted by adversity. Risk factors that challenge resilience include care burden, patient’s level of dependency, family disruption, and stigma of mental illness. However, protective factors that strengthen resilience include caregivers’ ability to have a favorable experience of caring and to think positively about caring (Luthar et al., 2000; Zauszniewski et al., 2009; Giesbrecht et al., 2013). Thus, resilience appears to have a strong effect on caregivers in deciding whether or not they experience caregiving burden when caring for patients with mental illness.
Studies on the resilience of family caregivers of patients with mental illness are limited in the literature. If family caregivers are resilient, they may successfully adapt to distressing conditions and become able to overcome stress and burden that are associated with providing care for a loved one with schizophrenia. Additionally, they will preserve their own quality of life and health and also the health of their family (Walton-Moss et al., 2005; Fan et al., 2014). Furthermore, resilient family caregivers will have better morale and psychological well-being, improved knowledge and understanding of their family member’s diagnosis, and have satisfying family members’ relationships with their relative with schizophrenia (Pickett-Schenk et al., 2006). On the contrary, if the family caregivers fail to do so, they become susceptible to stressful situations.Information gained regarding resilience, burden, and quality of life would help the nurse attending to the needs of the family caregivers find suitable interventions for those high-risk groups. Moreover, this could help increase our understanding about family members’ strengths and resources that they can be used to deal with the effects of the crises or stressors of severe mental illness (Saunders, 2003). Additionally, resilience in different cultures is unclear, and there is a need for research into the cultural effects on resilience (Van Breda, 2001).
This study aimed for the following:
- To assess the levels of resilience, burden of care, and quality of life in family caregivers of patients with schizophrenia.
- To determine the relationship between resilience, burden, and quality of life in family caregivers of patients with schizophrenia
What are the levels of resilience, burden, and quality of life of family caregivers of patients with schizophrenia?
What is the relation between resilience, burden, and quality of life in family caregivers of patients with schizophrenia?
| Participants and methods|| |
A descriptive correlational design was used in the study.
The study was conducted at the psychiatric outpatient clinic of Mental Health Hospital in Tanta City (which is affiliated to General Secretariat of Mental Health) and Psychiatric Outpatient Clinic Affiliated to Tanta University.
Participants of the study were a convenient sample consisting of 109 family caregivers of patients with schizophrenia who attended the outpatient clinic and met the following criteria:
- Age 18 years old or above.
- Living with the patient in the same environment for at least 1 year and responsible for the patient’s care.
Family caregivers with any physical or mental disabilities were excluded from the study.
The sample size was calculated using Epi-Info software statistical package created by WHO and Center for Disease Control and Prevention, Atlanta, Georgia, USA, version 2002. The criteria used for the sample size calculation were as follows: 95% confidence limit, and the expected percentage of patients with good quality of life of more than 60% of the total score is 16.3%.
Tools of the study
Four tools were used to collect data for this study.
Tool I: Sociodemographic and clinical characteristics structured interview sheet
It was developed by the researchers after reviewing the related literature. It includes caregiver’s age, sex, level of education, occupation, income, period of the time the caregiver spends in caring for their patients, duration of their patient’ illness, the presence of any disease in the family caregivers, availability of social support, and the degree of kinship to the patients.
Tool II: Connor-Davidson resilience scale
The scale was developed by Connor and Davidson (2003). This scale is used to measure the level of resilience in the caregivers. It consists of 25 items, all of which are rated on a five-point Likert scale, ranging from 0 (not true at all) to 4 (true nearly all the time). The total score ranges from 0 to 100. The higher the scores, the greater the resilience. In the present study, the score was calculated as follows: less than 50% indicates mild level of resilience, score of 50–75% indicates moderate level of resilience, whereas a score of less than 75 indicates high level of resilience.
Tool III: Burden of care inventory
It was developed by Zetit et al. (1980). The scale consists of 22 items that measure the burden of psychiatric patients’ family caregivers, all of which carry a five-point Likert scale ranging from 0 (never) to 4 (nearly always). A score ranging from 0 to 20 indicates little or no burden, 21–40 indicates mild to moderate burden, 41–60 moderate to severe burden, and finally a score of 61–88 reflects severe burden.
Tool IV: The WHO Quality-of-Life Scale brief version
It was developed by the World Health Organisation Quality Of Life WHOQOL Group (1998). It consists of 26 items that assess the subjective opinion of family caregivers regarding quality of life. The scale was designed for use in various populations. It was divided into four subscales, namely, physical health (seven items), psychological health (six items), social relationships (three items), and environmental factors (eight items). It also includes a facet on overall quality of life (two items). All items are rated on a five-point scale (from 1=very dissatisfied to 5=very satisfied). Higher scores indicate better quality of life. Caregivers with a score less than 50% denote poor quality of life, 50–75%(indicate fair quality of life, and more than 75 denote good quality of life. The four domains are scaled in a positive direction except for three items, which are reversed before scoring.
An official letter was issued from the Faculty of Nursing, Tanta University, to the director of the Neuropsychiatric Department in Tanta University Hospital and to the director of the mental health hospital in Tanta City.
- Tools I, II, and III were translated into Arabic language and back translated.
- Content validity was carried out by a group of five experts in the psychiatric medicine and nursing fields, and the required corrections were done accordingly.
- A pilot study was carried out on 15 family caregivers from the outpatient clinic to ensure the clarity and applicability of the study tools, and they were excluded later from the actual study. The pilot study proved the applicability of the study tools.
- The validated tools were then tested for their reliability using Cronbach’s α=0.829, indicating acceptable internal consistency.
- During the actual study, each family’s caregiver of patient with schizophrenia who fulfills the inclusion criteria was referred to the researchers by the psychiatrist, then contacted on an individual basis and interviewed in privacy by the researchers. The caregiver signed the informed consent form and completed the study tools. Each interview lasted between 30 and 45 min. Data collection was completed over a period of 5 months starting from May 2017 to September 2017.
An informed consent to participate in the study was obtained from the study participants. This was done after explaining the purpose of the study and emphasizing the right to refuse to participate in the study.
- Patients’ confidentiality was maintained throughout the interview.
- Collected data were used only for the purpose of the research and kept confidential.
The collected data were organized, tabulated, and statistically analyzed using statistical package for the social sciences version 19 (SPSS) created by IBM (Chicago, Illinois, USA). For numerical values, the range, mean, and SDs were calculated. The differences between two mean values were used using Student’s t-test. The correlation between two variables was calculated using Pearson’s correlation coefficient. The level of significant was adopted at P value of less than 0.05.
| Results|| |
[Table 1] indicated the distribution of the studied caregivers according to their sociodemographic characteristics. It was observed that the mean age of caregivers was 45.90±14.05 years. More than half of patients (57.8%) were females and nearly two-thirds of them were living in rural areas. In addition, more than two-thirds (68.8%) were married and nearly half of the caregivers (47.7%) were illiterate compared with only 14.7% who have university level of education. Regarding caregivers’ job and family income, those who were employed and those who had not enough income had almost the same percentages (54.1 and 55.0%, respectively)
Regarding caregivers’ clinical data, [Table 2] revealed that 37.6% of the studied caregivers had no available support whereas 62.4% of them had available support. Moreover, it was observed that the mean duration of care in years was 6.27±5.66, with more than half of caregivers (53.2%) caring for their relative psychotic patients for duration of more than 5 years. Most studied participants (71.6%) did not experience physical illness compared with 28.4% who have physical illness. Regarding the number of daily care hours, the number of caregivers who cared for their relatives for more than 10 h was nearly half of the total participants (45.9%), with a total mean of 9.16±3.94. Regarding to, the kinship to their psychiatric patients, the table showed that 29.4% of the studied subjects were brothers followed by 24.8% mother.
[Table 3] revealed the distribution of the studied caregivers in relation to their quality of life. The table revealed that approximately two-thirds of the patients (65.9%) had poor overall subjective quality of life compared with only 20.2% who had good quality of life. Regarding satisfaction with health, 65.1% of the caregivers had poor satisfaction with health, whereas 15.6% of them had good satisfaction with health. Speaking about quality-of-life subscales, more than two-thirds of the studied participants (69.7%) had poor quality of life in physical aspect and only 3.7% had good quality of life in this subscale. Regarding psychological aspect of quality of life, most caregivers (73.4%) had fair quality of life. As for social aspect of quality of life, those who have poor and fair quality of life had nearly the same percentages (42.2 and 40.4%, respectively), whereas 17.4% had good quality of life in this subscale. In relation to environmental aspect subscale, 61.5% of the studied caregivers had fair quality of life.
|Table 3 Distribution of studied participants in relation to their quality of life|
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[Table 4] revealed correlation between resilience, burden, and quality of life. It was noted that there is a statistically significant negative correlation between resilience and burden, where r=−0.453, P=0.001. Moreover, there was a statistically significant positive correlation between resilience and overall quality of life, where r=0.417, P=0.001, and satisfaction with health (r=0.281, P=0.003). Moreover, a statistically significant positive correlation was found between resilience and all subscales of quality of life, namely, physical aspect (r=0.524, P=0.001), psychological aspect (r=0.622, P=0.001), social aspect (r=0.458, P=0.001), and finally environmental aspect (r=0.526, P=0.001).
Furthermore, the same table shows a statistically significant negative correlation between burden and overall quality of life (r=−0.545, P=0.001), satisfaction with health (r=−0.386, P=0.001), and with all subscales of quality of life, namely, physical aspect (r=−0.465, P=0.001), psychological aspect (r=−0.478, P=0.001), social aspect (r=−0.412, P=0.001), and finally, environmental aspect (r=−0.551, P=0.001).
[Figure 1] illustrated the distribution of the studied caregivers in relation to resilience. It was noted that nearly half of the participants (47.7%) had moderate degree of resilience, whereas caregivers who have high and mild degree of resilience have almost the same percentages (25.7 and 26.5%, respectively).
|Figure 1 Distribution of the studied patients in relation to resilience.|
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Concerning burden on caregivers, [Figure 2] showed that 37.6% of participants had moderate to severe burden, whereas 32.1% of them had mild to moderate burden, and 27.5% had sever burden.
| Discussion|| |
Family caregivers play a major role in the recovery of patients with schizophrenia by confirming maintenance of life stability and prevention of relapse. They require resilience to overcome the burden of care and maintain their physical and mental health and improve their quality of life and functions (Van Breda, 2001; Amagai et al., 2016). Increasing resilience might be a new awareness to reduce the dominance of psychological distress among family caregivers of patients with schizophrenia (Chen et al., 2016). Therefore, this study aimed to assess the levels of resilience, burden, and quality of life among family caregivers of patients with schizophrenia and their relationships.
The present study found that approximately half of the family caregivers have moderate level of resilience and one-quarter of them have high level of resilience. This may be attributed to several explanations. First, the availability of support system. Presence of support may provide a means to adapt to circumstances within the caregiver role leading to more resilience. Supporting this explanation, Hesi et al. (2013) reported that the presence of good support system is among the factors associated with resilience. They also found that 60% of the caregivers had medium level of resilience and 24% had high level of resilience.
Second is the nature of schizophrenia as a chronic disorder. Schizophrenia is relatively chronic in nature; consequently, it may reduce the perceived stress on the caregivers over time as they may adjust to the behavior patterns and fluctuations in the patients over the years, and may become more resilient individuals as a result of habituation. This goes with the findings of the present study, as more than half of the caregivers who cared for their relatives with schizophrenia did it for a duration of more than 5 years.
Third is the nature of our culture. It is commonly known that Egyptian family is more accepting and supportive of their loved ones, as it has a sense of commitment to an unchangeable situation. In this respect, previous studies suggested that acceptance and understanding the features of the disease help the family stand together, even with the unpleasant behavior of a patient with illness. When family caregivers can accept the diagnosis and evaluate a crisis situation positively, they can find different ways of adapting to their situation (Greeff et al., 2006; Bishop and Greeff, 2015). Moreover, Amagai et al. (2016) conducted a study to examine the resilience of family members who cared for patients with schizophrenia and reported that the second factor in the resilience of a family caregiver was a sense of mission that enables them to protect a family member with illness. Patients’ family began to feel that it was their own problem and created an inner consciousness to confront the situation positively.
The results of the current study revealed that two-thirds of the study participants had poor overall quality of life and moderate to severe levels of burden. Moreover, caregivers’ quality of life is inversely correlated with their burden. This significantly negative correlation could be explained by the nature of burden and its effect on family caregivers’ quality of life. Indeed, caring for someone with schizophrenia can result in considerable consequences for the caregivers as a result of physical, psychological, social and financial burden (Möller-Leimkühler and Wiesheu, 2012; Vella and Pai, 2013). Watching a close relative experience mental illness on an everyday basis affects the family caregivers in a manner that creates pain and distress. Caregivers could experience a range of negative emotions, affecting both their mental and physical health. They may be unable to meet their patients’ needs along with their own personal needs; they also feel secluded and unable to participate in any social or recreational activities inside or outside home because of their responsibilities toward their patients (Vella and Pai, 2013; Manzini, 2015).
Researchers have suggested that as a result of prolonged distress and the physical demands of caregiving; the family caregivers’ physiological functioning is compromised. This will increase their risk for physical health problems and increased mortality (Saarni, 2010). Additionally, stigma toward mental illness is still a great problem for patients with mental illness and their families. It is considered a threat to the self-esteem and relationships for the patients with schizophrenia as well as their family members. It may also discourage family caregivers from seeking support (Chang and Horrocks, 2006; Vermeulen et al., 2015). Supporting this explanation, Tsang et al. (2003) reported that much of the burden on caregivers was related to stigma and lack of rehabilitation services.
All the aforementioned factors affect negatively family caregivers’ quality of life. In this respect, a study by Elliot et al. (2001) mentioned that burden among family caregivers of individuals with schizophrenia has been shown to affect significantly caregivers’ welfare and quality of life. Additionally, Foldemo et al., 2001 reported that family members are less satisfied with their overall quality of life and are significantly worried as a result of caring of a family member with a mental disorder. Along the same line, the World Federation of Mental Health (2010) reported that families caring for a relative with a chronic or mental illness experienced physical, psychological, social, and financial burdens, which consequently affect their quality of life.
On the contrary, two studies by Kate et al. (2013) and Vermeulen et al. (2015) found that caring for patients with psychiatric illness such as schizophrenia have positive effects on the family caregivers’ quality of life. These positive caregiving experiences that were associated with better quality of life include finding strength in oneself, with family, and with friends, which contrasts the dominance of stress-burden model in caregiving research. Therefore, caregiving is not all doom and gloom.
Regarding the correlation between resilience and burden, the present study revealed a statistically significant negative correlation between resilience level of caregivers and their burden. This means that greater resilience levels led to lower levels of burden and vice versa. This result is expected because all of us know that a resilient person is characterized by self-efficacy. This person views stress as a challenge/opportunity, has commitment, engages the support of others, accepts reality, has an extraordinary ability to adapt to significant change, and deeply believes that life is meaningful. Additionally, they have a sense of humor, action-oriented approach, patience, tolerance of negative effects, and optimism (Connor and Davidson, 2003; Sutcliffe and Vogus, 2003; Burns and Anstey, 2010).
All of these characteristics will definitely help them tolerate stress and burden of caregiving and to cope effectively. Moreover, Sexton et al. (2010) and Seoud and Ducharme (2015) reported that resilient caregivers are more likely to adopt problem-focused coping strategies that are considered as adaptive behavioral coping. Supporting this explanation, a study by Lakiska et al. (2000) found that passive coping styles are associated with a high level of burden, and problem-focused coping styles are related to lower levels of burden in caregivers.
On the same direction with the present study results, two studies found that as resilience increased, caregiver burden decreased (Bonaduce, 2013; Scott, 2013). Similarly, Lautenschlager et al. (2013) found that the stress of dealing with a family member experiencing a mental illness is inversely proportional to a healthy personality and greater resilience. Moreover Pipatananond et al. (2006) reported that resilience indicators have been linked with decreased caregiver burden in family members of persons with mental illness.
Concerning the correlation between resilience and quality of life, the present study also found a positive and statistically significant correlation between resilience and overall quality of life and its domains (physical, psychological, social, and environmental). This means when resilience level increased in caregivers, their quality of life increased. Again, the characteristics of resilient person that were mentioned before will be reflected on and affect their quality of life. Along the same line, previous studies have reported that individuals who are more resilient demonstrate a better mental state and physical health, perceive sufficient support from either family or friends, and cope well with adversity (Jonker and Greeff, 2009; O’Rourke et al., 2010).
This result is also consistent with Jain and Singh (2014) who found a significant correlation between the quality of life and resilience in caregivers of individuals diagnosed with bipolar disorder and schizophrenia. Moreover, Fernández-Lansac et al. (2012) found that caregivers with lower level of resilience were significantly associated with poor physical and mental health, whereas higher scores of resilience in caregivers were associated with reduced anxiety and depression, lower drug use, and absence of psychological interventions.
Conclusion and recommendations
Based on the results of the present study, it could be concluded that family caregivers of patients with schizophrenia had moderate level of resilience, experiencing moderate to severe burden, and had poor overall quality of life. Moreover, resilience was positively correlated with quality of life. On the contrary, caregiver’s burden was negatively correlated with each of resilience and quality of life. This finding leads to creating more strain of decreasing family caregivers’ burden and enhancing their quality of life by emphasizing the significant role of resilience.
Based on the results of this study, certain recommendations were raised
- A rehabilitation program should be established and ongoing family interventions should be conducted for family caregivers to enhance their resilience and consequently their coping skills, and hence their quality of life becomes better.
- Supportive interventions and counseling services should be implemented to decrease the effect of the burden on the family, and hence improve quality of life.
- Community mental health nurse should evaluate the ability of the family caregiver to care and manage patients at home through home-visit nursing care and develop a care model suitable for each home situation.
The authors thank all family caregivers who agreed to participate in this research study.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3], [Table 4]