Investigation of the Effect of Self-Ef fi cacy Levels of Caregiver Family Members of the Individuals With Schizophrenia on Burden of Care
Hatice Durmaz ⁎ , Ay ş e Okanl ı
Department of Psychiatric Nursing, Faculty of Health Sciences, Ataturk University, Erzurum, Turkey
a b s t r a c t
Sixty-two individuals with schizophrenia and their families were part of a descriptive study that investigated the effect of self-efficacy levels on the burden of care, using family member caregivers of schizophrenia patients. Data were collected using a questionnaire on the descriptive characteristics of patients and their families, the Self-Efficacy Scale, and Zarit Caregiver Burden Scale. The results for caregivers indicated a total mean self-efficacy score of 76.4 ± 17.76 and a total mean of burden of care score of 68.64 ± 18.60. A negative significant relation was discovered by looking at the correlation between the total mean scores (r =−.260, pb0.05). These results indicate that the burden of care decreases with the increasing level of self-efficacy in caregiver family members.
© 2014 Elsevier Inc. All rights reserved.
Schizophrenia is characterized by disruptions (cognitive healing and relapsing) in perception and emotional areas; it occurs equally in both sexes (Yıldız, 2005). It is present in every society and leads to a 25% occupation of hospital beds, loss of productivity, high costs associated with therapy, a decrease in patient life expectancy, and an increase in patient suicide. The annual incidence rate of schizophrenia is 10–54 individuals per 100,000 people (Işık, 2006; Köroğlu & Güleç, 2007). There are 650,000 individuals with schizophrenia in Turkey (Çekmeci, 2005) and approximately 40 million worldwide (Arieti 2003). Considering the social burden of the disease on the patients' relatives, it is possible to say that 1–2 million people in Turkey are affected by schizophrenia (Üçok, 2008).
Since schizophrenia is a chronic disease that affects the patient and their family, severe disruptions in feelings, thinking, and behavior are experienced by all family members (Göğüş et al., 2001). The symptoms, disease process, and loss of ability causes a great material and spiritual burden for families and society (Awad & Voruganti 2008;
Baskak, Atbaşoğlu, & Saka 2009; Chien, Chan, & Morrissey 2007;
Liberman 2011). Many of the studies conducted in Turkey demon- strate that caregivers face difficulties and/or burden in various areas of their lives (Akbulut 2009; Başıbüyük 2004; Tel & Terakye 2000). There is a consensus that both positive and negative symptoms of schizophrenia impact the caregiver burden, and that the severity level of the symptoms significantly affect the perceived caregiver burden (Awad & Voruganti 2008; Gülseren et al., 2010; Magliano et al.
2002; Roick et al. 2007).
Looking at the studies conducted in Turkey, Karancı (1995) examined the burdens of the patients' relatives and reported that the caregivers mostly experience subjective and financial burdens from the patient's care and treatment. Another study byDoğan (2001) suggests that these families live with economic difficulties, limit their social relations, are unable to cope with the negative behavior of patients, and have negative feelings and attitudes toward patients.
In reviewing the international literature, it is evident that families from Latin America are highly successful in accepting patient's current inabilities, and maintaining hope for the future. Caucasian Americans feel more of a burden than African Americans, and have an attitude of rejection toward the patients (Awad & Voruganti 2008). African Americans are less tolerant to the destructiveness of psychotic behavior than other ethnic groups while Caucasian Americans are less tolerant to the loss of contribution of the patient to the production than other ethnic groups (Hoffmann & Mitchell 1998).
Looking at the comparative studies on caregiving in the culturalfield, though a burden of care is experienced in similar areas in Turkey, people were more tolerant overall. Efforts are required to streamline and support caregiver services in Turkey—this study aspires to this purpose.
Self-efficacy and competency, concepts that affect the burden of care, are the self-judgments and beliefs of an individual on his or her level of success in overcoming potential difficulties (Bandura 2002).
Self-efficacy is an important characteristic that determines how an individual feels, thinks, and behaves. Feelings of low self-efficacy cause low self-esteem and pessimism, whereas feelings of high self- efficacy lead to overcoming challenges and engaging in purposeful work (Gözüm, 1999). It has been found in the studies conducted on the concept of self-efficacy that the caregiving family members are much less affected by the problems experienced with patients as their coping-capabilities improve, and burden of care and difficulties in care affect coping-capabilities adversely and reduce the quality of care Conflict of interest: The authors have no conflicts of interest to disclose.
⁎ Corresponding Author: Hatice Durmaz (Research Assistant), Ataturk University Faculty of Health Science, Department of Psychiatric Nursing, Erzurum, Turkey.
E-mail addresses:[email protected](H. Durmaz),[email protected] (A. Okanlı).
http://dx.doi.org/10.1016/j.apnu.2014.04.004 0883-9417/© 2014 Elsevier Inc. All rights reserved.
Contents lists available atScienceDirect
Archives of Psychiatric Nursing
j o u r n a l h o m e p a g e :w w w . e l s e v i e r . c o m / l o c a t e / a p n u
(Kara, Van der Bijl, Shortridge - Baggett, Aştı, & Ergüney 2006; Kara &
Aştı2004; Navidian, Kerman Saravi, & Navabi Rigi 2012; Stuifbergen, Seraphine, & Roberts 2000).
This study was conducted to determine the burden of care, as perceived by caregiving family members of individuals with schizophrenia, and the effect of self-efficacy on the burden of care.
MATERIAL AND METHOD
This descriptive and correlational study uses a population of caregiving family members of individuals with schizophrenia who are either followed-up at home or hospitalized, and who were diagnosed with schizophrenia (according to DSM-IV diagnosis criteria) between November 15, 2010 and May 30, 2011. No sampling was performed on the study population. The study began with 69 family members that provide care for their individuals with schizophrenia, however 7 of the caregivers were not able to complete the study citing a variety of reasons; the study was completed with a total of 62 caregivers.
Inclusion Criteria for the Study
• Resides in the center of Erzurum, Turkey
• Open to communication and collaboration
• Caregivers have not received a psychotic diagnosis at the time of the study
• Patient was diagnosed at least 1 year prior to the study
• Caregiver lived with the patient for at least 6 months and is directly responsible for his or her care
A questionnaire was prepared by the researcher, which included questions on the characteristics of individuals with schizophrenia and the caregiver's family members. Two scales were used in data collection: the Self-efficacy Scale developed bySherer et al. (1982) and adapted to Turkish byGözüm and Aksayan (1999); and the Zarit Caregiver Burden Scale, developed byZarit, Reever, and Bach-Peterson (1980)and adapted to Turkish byİnci and Erdem (2008).
The General Self-Efficacy Scale measures the general perception of non-specific self-efficacy. Cronbach's Alpha internal consistency coefficient was found as 0.81, and test–retest reliability was found as 0.92, for the reliability and validity of the Turkish version of the scale. Cronbach's alpha coefficient for internal consistency of this study was calculated as 84.7.
Zarit Caregiver Burden Scale is a 22-item instrument that determines the impact of caregiving on the individual's life. The items in the scale are usually for social and emotional areas, and higher scores in the scale indicate higher burden experienced. Internal consistency coefficient of the scale was reported as 0.95. And, internal consistency coefficient of this study was found as 0.93.
RESULTS
Looking at the descriptive characteristics of the caregivers involved in this study, the average age of caregivers was 41.59 ± 13. A total of 45.2% were females, 19.4% were patients' mothers, 64.5%
were married, and 43.5% were unemployed due to their role as caregivers (Table 1).
Examining the descriptive characteristics of patients, their average age was 35.93 ± 14.40, and their disease duration was 9.16 ± 7.74 years. A total of 77.4% of the patients were male, 25.8% were single, 51.6% had graduated from primary school, and 46.8% were unemployed (Table 2).
Among the difficulties experienced by caregivers while taking care of their patients, exposure to aggression was at 33.9% and included slapping, pushing, beating, or hurting; disobedience (not performing the given tasks or performing the opposite) was at 4.8%; behavioral disorders such as improper behaviors, freezing, constantly repeating
the same movement were at 32.3%; communication problems such as repeating the same words, mispronunciation, self-talk, or not talking were at 16.1%; and patients' resistance to receiving medication and embracing treatment was at 12.9% (Table 3).
The mean self-efficacy total score of the caregiving family members was 76.4 ± 17.76. This score indicates a medium level of self-efficacy for caregiving families (Table 4). The mean total score of burden of care for caregiving family members was 68.64 ± 18.60.
This score shows that the level of burden of care of caregiving families is at a high level (Table 4).
The total scores of the caregiving individuals from the self-efficacy and burden of care scales indicated a negative significant correlation (r =−.260*, pb0.05) (Table 5). This result indicates that burden of care decreases with the increasing level of self-efficacy of caregiving family members.
In analyzing the relationship between scores of the sub-scales of the caregivers, a negative significant relation was found between the Table 1
Distribution of the Descriptive Information of the Care Giver Family Members of Individuals With Schizophrenia (n= 62).
Features Number %
Gender
Female 28 45.2
Male 34 54.8
Education status
Illiterate 9 14.5
Primary education 29 46.8
High-school 17 27.4
University 7 11.3
Employment status
Employed 27 43.5
Unemployed 35 56.5
Marital status
Married 40 64.5
Single 22 35.5
Family structure
Extended family 12 19.4
Nuclear family 50 80.6
Caregiver's relationship status
Mother 12 19.4
Father 11 17.7
Sibling 23 37.1
Spouse 0 0
Child 8 12.9
Other 8 12.9
Presence of other psychiatric disorders in the family
Yes 16 25.8
No 46 74.2
Age X ± SD41.59 ± 13
Table 2
Descriptive Information of Individuals With Schizophrenia and Distribution of the Features Related to the Schizophrenia (n= 62).
Features Number %
Gender
Female 14 22.6
Male 48 77.4
Education status
Illiterate 4 6.5
Primary education 32 51.6
High-school 20 32.3
University 6 9.7
Employment status
Employed 27 46.8
Unemployed 35 53.2
Marital status
Married 16 25.8
Single 43 69.4
Widow/Divorced 3 4.8
Age X ± SD35.93 ± 14.40
Disease duration (years) X ± SD9.16 ± 7.74
completion of a behavior and tackling the challenge's sub-scales (r =−.259*, pb0.05, r =−.358**, pb0.01) (Table 5). This result demonstrates that the burden of care for caregivers decreases if he or she completes the behavior and tackles their patient challenges.
DISCUSSION
Exposure to aggression, behavioral disorders, refusing medica- tions, and an inability to communicate effectively with patients are among the most common challenges faced by caregivers. The studies conducted in Turkey indicate that both positive and negative symptoms of schizophrenia have a significant impact on the caregiver's perceived burden.
A study byTel and Terakye (2000)stated that all of the relatives of individuals with schizophrenia experience challenges in patient care.
Başıbüyük (2004)has listed some of these difficulties in a study on the challenges experienced by family members and their levels of coping with stress during the homecare of patients hospitalized in the psychiatric clinic. These difficulties include a lack of self-care;
uncontrollable patient behavior; harm to themselves and others;
and refusing to take their medication. In another study conducted in Turkey, the major difficulty experienced by relatives of patients was being unable to cope with aggressive and uncontrolled patient behavior (Akbulut 2009). The results of this study, regarding the problems experienced by caregivers in Turkey, are consistent with previous studies' results.
Looking at the international literature, caregivers of patients with schizophrenia experience high levels of burden/difficulties (Maldonado & Urízar 2007; Martens & Addington 2001; Mcdonell, Short, Berry, & Dyck 2003; Parabiaghi et al. 2007; Urizar & Maldonado 2006).Larsen (1998)andBonnel (1996)have highlighted that the health of the caregivers deteriorated due to caregiving.Bonnel (1996) also reported that these caregivers are at risk. Similarly, according to Stommel, emotional and physical burdens in caregivers lead to increased anxiety and depression, health deterioration, increased doctor's visits, and increased psychotropic drug use (Stommel, Collins,
& Given 1994).
International studies about caregivers claim that the caregiving process can lead to severe discord. In a study by Awad and Voruganti, the severe burden of care has led to above average divorce rates and family divisions in caregiving families as compared with the national average (Awad & Voruganti 2008). In Turkey, family members complained that they were unable to cope with the burden of care;
however, no data were observed on family division (Akbulut 2009).
This result may be due to the strong socio-cultural ties within families and the caregiver's perception of caregiving as a moral responsibility.
Gibbons, Horn, Powell, and Gibbons (1984)found that positive symptoms lead to more burden, whereasRaj, Kulhara, and Avasthi
(1991),Gopinath and Chaturvedi (1992)have found that negative symptoms lead to increased burdens. Also in the studies conducted in subsequent years, it was found that detrimental effects of schizo- phrenia were effective in caregiver burden, and both positive and negative symptoms were associated with burden of the family (Adeosun 2013, Magliano et al. 2002; Roick et al. 2007). The results of this study are similar to the results of an international study conducted on caregiver families of patients with schizophrenia, and in this regard, caregivers need to be supported.
The mean self-efficacy total score of caregiving family members was 76.4 ± 17.76. Considering the mean scores of these scales, this value suggests moderate levels of self-efficacy in caregivers.
There is limited number of studies in Turkish and foreign literature on the concept of self-efficacy in psychiatric illnesses. In a study conducted, it was found that family-to-family support programs provided to caregivers of individuals with schizophrenia reduce the burden of care, and increase the level of self-efficacy (Yıldırım et al., 2014). Many studies conducted on chronic diseases revealed that individuals with higher levels of perceived self-efficacy are more successful in initiating and maintaining positive health behaviors, and in challenging the obstacles. (Elliott, Jacobson, & Seals 2006; Kara 2002;
Martens & Addington 2001; Senemoğlu 2001; Zengin 2007). A caregiver's perception of adequacy and effectiveness in himself or herself is an important factor in overcoming the different situations (Stuifbergen et al. 2000). It is suggested that caregiving family members of patients with schizophrenia with higher levels of self-efficacy will have a positive contribution in effectively coping with schizophrenia, which has devastating effects in various areas of their lives.
The mean total score of burden of care for caregiving family members was 68.64 ± 18.60. This score demonstrates a higher level of burden of care in caregiving families.
Karancı (1995) examined the burdens of patients' relatives in Turkey. He reported that the caregivers largely experience subjective andfinancial burdens from the patient's care and treatment. In a study reported byDoğan (2001), families experience economic difficulties;
limit their social relations; are unable to cope with the negative behavior of patients; and have negative feelings and attitudes towards the patient. The results of this study are in line with the studies conducted in Turkey.
Many comparative cultural studies have reported difficulties in defining a burden of care. The concept of a burden is not universally defined, and so it differs in many cultures. Although the types of burdens and the mean scores have similarities in domestic and foreign studies, there are cultural differences in naming the burden and in the responses provided.
In studies conducted in different cultures, Caucasian Americans feel more of a burden than African Americans, and express attitudes of rejection toward patients (Awad & Voruganti 2008). These cultural factors play important roles in both the perceived burden and the attitudes of relatives toward patients. In another study, African Americans were deemed less tolerant to the destructiveness of psychotic behavior than other ethnic groups (Hoffmann & Mitchell 1998).
A study carried out byMaldonado, Urízar, and Kavanagh (2005)in Barcelona included 65 caregivers of individuals with schizophrenia.
All of the caregivers scored values between 34 and 88, which indicated that they were overburdened. Parabiaghi et al. (2007) stated that the levels of burden in families of individuals with schizophrenia are at alarmingly high levels. In a study byUrizar and Maldonado (2006), caregivers were also identified as having extremely high levels of burden. The average burden level was 66.51. Of the caregivers, 90.2% had extremely high burdens, and 9.8%
had mild burden (Urizar & Maldonado 2006). Given that this study's average score of total burden of care was 68.64, the similarities between scores are potentially connected to the human aspect of care, and the support provided to caregivers through support programs and improved home care services in Turkey.
Table 3
Distribution of the Challenges Faced by the Caregiver Family Members of the Individuals With Schizophrenia during Care.
Challenges Number Percentage
Aggression (slapping, etc.). 21 33.9
Disobedience 3 4.8
Behavioral disorder 20 32.3
Communication problems 10 16.1
Refusing the treatment 8 12.9
Table 4
The Mean Values of the Self-Efficacy and Care Burden Scales Taken by the Caregiver Family Members of the Individuals With Schizophrenia.
Scales X ± SD
Self-efficacy scale total 76.4 ± 17.76
Care burden scale total 68.64 ± 18.60
The concept of burden of care in Turkey was studied in many physical chronic diseases such as cancer, chronic obstructive pulmonary disease, kidney failure with various caregiver burden scales, and it was found that these diseases cause various degrees of caregiver burden (Atagün, Devrim Balaban, Atagün, Elagöz, & Yılmaz Özpolat 2011; KardaşÖzdemir, AkgünŞahin, & Küçük 2009; Pürlüsoy, Sunay,Şengezer, & Yalçıntaş2011; Tel, Demirkol, Kara, & Aydın 2012).
However, one of the studies suggests that care given to patients with psychotic illnesses causes higher level of burden. (Yüksel, Varlıbaş, Karlıkaya,Şıpka1, & Tireli 2007).
Looking at the international literature, many studies have revealed that family members providing care for individuals with schizophre- nia have higher levels of burden of care. (Maldonado & Urízar 2007;
Martens & Addington 2001; Mcdonell et al. 2003; Parabiaghi et al.
2007; Urizar & Maldonado 2006). Given the total burden of care scores of caregivers of individuals with schizophrenia, this study's results are consistent with thefindings of international studies.
The coping skills and beliefs of a caregiving individual are factors known to affect a burden of care (Asada, Motonaga, & Kinoshita 2000;
Nabors & Seacat 2002). The internal motivation of a caregiver also determines the level of the burden (Kim 2001). Studies demonstrate that the burden of care decreases as the beliefs of caregivers of their own capabilities increase (Chou, Jiann-Chyun, & Chu 2002). Although there are numerous studies on the burden of care (often covering patients and their families) very few studies have focused on facilitating the caregiver's burden of care (Awad & Voruganti 2008;
Caqueo-Urízar & Gutiérrez-Maldonado 2006). Self-efficacy perception is a reflection (Gözüm & Aksayan 1999) of the individual's capacity to cope with stress and a judgment/belief (Bandura 2002) about his or her capability to overcome potential challenges. Therefore, increasing the self-efficacy level of the caregiving individual could reduce the burden of care.
RESULT AND SUGGESTIONS
This study attempted to determine the effect of self-efficacy on burden of care in caregiver family members whose patients have schizophrenia. The results of this study indicate that caregivers bear higher levels of burden, are exposed to the most aggression, have moderate levels of self-efficacies, and have decreased burdens of care as their self-efficacy levels increase.
Based on these results, the following recommendations are suggested:
• The following strategies should be implemented for family members: home visits after patient discharge; activities intended to increase the self-efficacy levels of families; training sessions on schizophrenia; and psychosocial support to help families cope with the destructive effects of schizophrenia and aggression issues.
• Given that each family may experience burdens in different areas, burden scales with sub-dimensions should be developed, and similar studies should be repeated comprehensively with a larger sample group.
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Table 5
The Correlation Between Self-Efficacy Scale and Burden of Care Scale of the Caregiver Family Members of the Individuals With Schizophrenia.
Scales Start of the behavior Sustaining the behavior Completing the behavior Struggling the obstacles Self-efficacy scale total Care burden scale total r =−.158p = .220 r =−.231p = .071 r =−.259⁎p = .042 r =−.358⁎⁎p = .004 r =−.260⁎p = .041
⁎ Significant at 0.05 level.
⁎⁎ Significant at 0.01 level.
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