Archives of Psychiatric Nursing xxx (2014) xxx–xxx
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Depression, Anxiety and Quality of Life in Caregivers of Long-Term Home Care Patients Hülya Yıkılkan ⁎, Cenk Aypak, Süleyman Görpelioğlu Department of Family Medicine, Dışkapı Yıldırım Beyazıt Training and Reseach Hospital, Ankara, Turkey
a b s t r a c t Family caregivers of patient in long-term care facilities often have high rates of stress, burden and psychological illness. A descriptive study was carried out with 63 caregivers. Caregivers were asked to complete a demographic questionnaire, Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI) and Short form 36 (SF-36), which measures health related quality of life (QoL). The majority of caregivers were female (79.4%), and most often the daughter of the patient in long-term care (47.6%). The mean BDI score of the sample was 18.8, and the mean BAI score was 20.0. Almost all the mean scores referring to the QoL were decreased (lower than 50), with the exception of mental health. On the SF-36 questionnaire, the lowest scores were observed on the role-emotional, role-physical, social functioning and vitality scales of the SF-36. © 2014 Elsevier Inc. All rights reserved.
Turkey has a young population, with 24.9% of the population being under 14 years old; however, projections suggest that the population will be aging rapidly in the near future. The current ratio of the population aged over 65 is 7.5% (Turkish Statistical Institute, 2013), and expected to be 16% in 2025 (Savaş, Karahan, & Saka, 2002). Thus, healthcare needs are expected to increase. The provision of medical care and rehabilitation at home, as opposed to learn-term care facilities for the elderly or bedridden, is a common practice in many developed countries. Home care is a popular option, as it reduces hospitalization and healthcare costs (Sales, 2003). An increased number of individuals with complex healthcare needs are being cared for at home by their families. This shift from long-term care facility, to home care, places an increased demand on family caregivers. A study that investigated patients in a family practice demonstrated that 21% of the patients had provided care for persons with chronic medical conditions (Andolsek et al., 1988). The task of caregiving results in additional responsibilities on the caregivers' daily life, and occupies the caregivers' time, energy, and attention (Leow & Chan, 2011). Caregiver burden is a term that covers all the physical, emotional and financial tolls of providing care (Parks & Novielli, 2000). High rates of stress, burden and psychological illness are observed in family caregivers who provide for long-term home care patients (Beinart, Weinman, Wade, & Brady, 2012; Kasuya, Polgar-Bailey, & Takeuchi, 2000). Schulz found that caregivers who were providing care often experienced burden and strain, and had a 63% higher risk of mortality than non-caregivers (Schulz & Beach, 1999).
⁎ Corresponding Author: Hülya Yıkılkan, MD, Dışkapı Yıldırım Beyazıt Training and Research Hospital, Irfan Basbug cad. Diskapi, Ankara, Turkey. E-mail address: [email protected] (H. Yıkılkan).
Professional health care providers can have a significant impact on the health and well-being of family caregivers as well as those cared for by family. In Turkey, professional home health care has been provided since 2010, mostly by nurses under the supervision of a primary care physician. While working with family caregivers, the primary care physician and nurse often see a burdened group of caregivers. By assessing the caregiver's level of burden, including the issue of depression, the health provider can identify those who are at high risk for physical and emotional problems (O'Brien, 2000). Research has consistently reported that increased caregiver burden is associated with a decline of well-being and quality of life (QoL). Song et al. showed that family caregivers of patients with terminal cancer experience mental health problems and deterioration of health-related QoL (Song et al., 2011). Results of a study by George and Gwyther indicated that, relative to random community samples, family caregivers of demented adults were most likely to experience problems with mental health and social participation (George & Gwyther, 1986). Payne et al. showed that 33 of 39 caregivers of patients in palliative care scored above the threshold for psychological distress (Payne, Smith, & Dean, 1999). In Turkey, there are limited studies about burnout of caregivers of groups such as dementia or cancer patients. Hacialioglu et al. studied the QoL of caregivers of cancer patients in the east of Turkey, using the World Health Organization Quality of Life-Short Form, Turkish Version (Hacialioglu, Ozer, Yilmaz Karabulutlu, Erdem, & Erci, 2010). QoL scores of those feeling unhealthy during the last 2 weeks were low in every domain. Karabulutlu et al. studied a total of 150 caregivers of cancer patients, and found the prevalence of anxiety and depression to be 46% and 72%, respectively (Karabulutlu, Akyıl, Karaman, & Karaca, 2013). In fact, physicians and nurses in primary care tend to work with a broad range of caregivers and patients, irrespective of their diagnosis. There are no studies about the
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Please cite this article as: Yıkılkan, H., et al., Depression, Anxiety and Quality of Life in Caregivers of Long-Term Home Care Patients, Archives of Psychiatric Nursing (2014), http://dx.doi.org/10.1016/j.apnu.2014.01.001
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H. Yıkılkan et al. / Archives of Psychiatric Nursing xxx (2014) xxx–xxx
depression, anxiety and the QoL of caregivers for long-term care home patients in Turkey. The aim of our study was to assess depression, anxiety and the QoL of long-term caregivers without a limitation of a specific subgroup of caregivers. In addition, we aimed to bring awareness of caregiver burden to professional healthcare workers. MATERIAL AND METHODS
Statistical Analysis The data obtained from the study was analyzed using Statistical Package for Social Sciences version 18 for Windows. Descriptive statistics are presented as mean ± standard deviation, range and frequency (% values). Chi square test was used for categorical variables and student's t test for normally distributed data with equal variances. The Mann–Whitney U-test was used if the variables do not show a normal distribution. Statistical significance was set at P b 0.05.
Study Design Our study design is a descriptive cross-sectional study. Study was carried out in a home health care center of a research hospital in Ankara. Ankara is the capital city of Turkey, and our center serves the greatest number of home care patients in Ankara. Between September and December 2012, there were 161 new applications to the center. Caregivers of home care patients were consecutively invited to participate in this questionnaire-based study. Nurses gave an information letter and a consent form to the eligible caregivers. Caregivers who consented to participate were thereafter more thoroughly informed by the first author, who also provided the structured questionnaires. Completed questionnaires were collected on the next home visit by a representative of the home health care center. Inclusion criteria for caregivers were: age ≥18 years, at least 6 months of care provided, ability to speak, read, and write Turkish, and providing written consent. Patients with a known psychiatric history were excluded from the study. Of 161 eligible caregivers, 38 declined to participate; 11 consented but did not return the questionnaire, 32 were non-native speakers and 17 were illiterate. The present study protocol was accepted by the ethics and research committee of our hospital. Outcome Measures Caregivers were asked to complete a demographic questionnaire, Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI) and Short form 36 (SF-36) (SF-36), which measures health related QoL. Reliability and validity of Turkish version of the SF-36 has been previously established (Kocyigit, Aydemir, Fisek, Olmez, & Memis, 1999). The SF-36 evaluates QoL in eight domains related to physical and mental health, and each variable ranges from 0 to 100 points, with zero being the worst and 100 the best possible score. Depressive symptoms were evaluated by the BDI which was developed by Beck (Beck, Ward, & Mendelson, 1961) and adapted to Turkish language by Hisli (Hisli, 1989). It has not been validated specifically for caregivers, however for non-psychiatric Turkish populations, the alpha range is 0.55–0.73 (mean = 0.60). BDI is a self-reported scale, with 21 items, that measure emotional, somatic, cognitive, and motivational symptoms seen in an individual with depression. The aim of the scale is not to diagnose depression, but to objectively determine the severity of the depressive symptoms. BDI scores greater than or equal to 17 (total score N 28 signifies severe depression) have been reported to indicate depression that may require treatment, with more than 90% accuracy. Anxiety symptoms were evaluated by the BAI, which was developed by Beck (Beck, Epstein, & Brown, 1988), and a validated version of the BAI was adapted to the Turkish population by Ulusoy (Ulusoy, Erkmen, & Sahin, 1998). The BAI's internal consistency (Cronbach's Alpha) ranges from 0.92 to 0.94 for adults, and test–retest reliability is 0.75. The BAI is a self-administered instrument with 21 items that cover the most frequent anxiety symptoms observed in clinical practice. Each item was scored 0, 1, 2 or 3, with higher scores denoting an increasing severity of symptoms. Total scores can be categorized as minimal (0–7), mild (8–15), moderate (16–25), and severe (26–63).
RESULTS A total of 63 caregivers participated in the study. The mean age of the participants was 47.4 ± 11.9 years (range: 20–74 years). The mean age of the female caregivers (n = 50) was 45.7 ± 12.2, while that of male caregivers (n = 13) was 53.8 ± 8.4 (P = 0.02). The median duration of time spent providing care was 4 years (range: 1– 32 years). The majority of caregivers were female (79.4%), and the daughter of the patient (47.6%). Socio-demographic characteristics of the caregivers are shown in Table 1. The mean BDI score of the sample was 18.8 with 58.7% of the scores meeting the criteria for at least mild depression and 12.7% meeting the criteria for severe depression. With higher education and a lower duration of caregiving, the mean BDI scores were statistically significantly lower (P = 0.04, P = 0.02 respectively). The mean BAI score of the sample was 20.0 with 84.1% of the scores meeting the criteria for at least mild anxiety and 30.2% meeting the criteria for severe anxiety. Caregiving for 3 or more years was represented by an even higher incidence of anxiety (P = 0.001). The distribution of mean BDI and BAI scores according to gender, age, education and duration of caregiving is shown in Table 2. The mean scores for QoL in the categories included in SF-36 were 53.1 ± 18.6 for mental health, 33.0 ± 26.8 for social functioning, 48.5 ± 27.0 for bodily pain, 28.6 ± 37.9 for role-physical, 33.3 ± 22.1 for vitality, 44.6 ± 22.8 for general health, 25.4 ± 36.2 for role emotional and 48.5 ± 29.2 for physical functioning. Statistically significant differences for general health (P = 0.03) and mental health (P = 0.00) were observed for caregiving more than 2 years and additionally for vitality (P = 0.01) for caregiving more than 3 years. Statistically significant differences in SF-36 mean scale scores were not observed as a function of age, gender and education. DISCUSSION The primary finding of this study is that the majority of family caregivers experience high levels of burden, a finding consistent with Table 1 Socio-Demographic Characteristics of the Caregivers Mean ± SD/median Age (years) Length of providing care (years)
Range: 20–74 Range: 1–32
Gender
Female Male Primary (5) Middle (8) High (11) University Daughter Daughter-in-law Son Spouse Son-in-law Mother
47.4 ± 11.9 4⁎ Number (%)
Education (years)
Relation to long-term patient
50 (79.4) 13 (20.6) 36 (57.1) 4 (6.3) 10 (15.9) 13 (20.6) 30 (47.6) 11 (17.5) 10 (15.9) 9 (14.3) 2 (3.2) 1 (1.6)
⁎ Median.
Please cite this article as: Yıkılkan, H., et al., Depression, Anxiety and Quality of Life in Caregivers of Long-Term Home Care Patients, Archives of Psychiatric Nursing (2014), http://dx.doi.org/10.1016/j.apnu.2014.01.001
H. Yıkılkan et al. / Archives of Psychiatric Nursing xxx (2014) xxx–xxx Table 2 Distribution of the Mean Beck Depression Inventory (BDI) and Beck Anxiety Inventory (BAI) Scores According to Gender, Age, Education and Duration of Caregiving
Gender Age (years) Length of providing care (years) Duration of caregiving (years) Total
n
BDI scores (mean ± SD)
Female Male b45 ≥45 5 N5
50 13 30 33 36 27
18.8 18.8 17.6 19.9 20.8 15.9
b3 ≥3
18 45
14.4 ± 8.3 20.5 ± 9.8
63
18.8 ± 9.8
± ± ± ± ± ±
9.8 10.2 10.1 9.5 10.0 8.8
P value 0.99 0.36 0.04
0.02
BAI scores (mean ± SD) 20.5 18.3 21.3 18.9 20.8 19.0
± ± ± ± ± ±
12.4 11.6 13.5 10.9 11.0 13.8
13.3 ± 6.5 22.7 ± 12.9
P value 0.56 0.44 0.57
0.00⁎
20.0 ± 12.2
⁎ Mann–Whitney U test.
the literature (Annestedt, Emstahl, Ingvad, & Samuelsson, 2000; Papastavrou, Kalokerinou, Papacostas, Tsangari, & Sourtzi, 2007; Tornatore & Grant, 2002; Winslow & Carter, 1999). In Turkey, the prevalence of depression in the general population is 7.9% and 5.8%, in women and men, respectively (Kılıç, 1998). In our study we found that 58.7% of caregivers had depressive symptoms and 12.7% had severe depression. According to a study of patients with Alzheimer's type dementia, 68% of caregivers were highly burdened, and 65% exhibited depressive symptoms (Papastavrou et al., 2007). In our study, we were unable to find any significant difference of burden between genders. According to a meta-analysis that integrates results from 229 studies on gender differences in caregiver psychological and physical health and caregiving stressors, contrary to common preconceptions, gender differences in caregiving variables were small to very small (Pinquart & Sörensen, 2006). Payne et al. reported that female caregivers experienced more psychological morbidity and strain (Payne et al., 1999). This observation was not confirmed in our study. Explanations for this may include biased samples, or a low number of male respondents in our study. Types of diseases and cultural differences may be an alternative explanation of the differences. Our results show that a caregiver's level of education is correlated with their burden. Data from other studies are in accordance with our findings (Contador, Fernández-Calvo, Palenzuela, Miguéis, & Ramos, 2012; María García-Alberca, Pablo Lara, & Luis Berthier, 2011; Sansoni, Vellone, & Piras, 2004). We found that caregivers with a higher education had lower levels of burden. It seems that those caregivers have developed more effective skills in managing the demand associated with care of a family member and their own stress. A longer duration of caregiving seems to be related to increased burden in both depressive and anxiety symptoms (P = 0.02, P = 0.00 respectively). A high level of anxiety in caregivers may be related to concerns about the future, coping with the situation, fear of loss and being alone, sole responsibility for children, or unfamiliar tasks at home (Grov, Dahl, Moum, & Fosså, 2005). In addition to all those factors, unpredictable time of caregiving may contribute to increased burden. According to our results, the majority of caregivers were women (79.4%), often being the daughter (47.6%) of the patient receiving the care. In Turkish society, the traditional view is that caregiving is primarily a family responsibility, with a particular emphasis of this place on women. Religious beliefs, such as the filial piety also contribute to that social assumption. The caring role is ascribed to families, and many women undertake this not by choice, but, because it is socially imposed on them. It is also expected that women will fulfill the difficult task of care without preparation or knowledge, because it is claimed to be characteristic of their ‘female nature’ (Connell, Janevic, & Gallant, 2001). The child or children of the elderly
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find themselves with demanding care obligations. Caregivers sacrifice themselves to care for their parents, resulting in strain on their physical and mental health (Yang, Hao, George, & Wang, 2012). Almost all the mean scores referring to the QoL were decreased (lower than 50), with the exception of mental health. This is in contrast to George et al. and Grov's observations of reduced QoL in mental health in caregivers (George & Gwyther, 1986; Grov et al., 2005). That may be related to their subgroup of caregivers, who were tending to cancer patients. The lowest scores were observed the roleemotional, role-physical, social functioning and vitality scales of the SF-36. The results emphasized that caregivers had problems with work or other daily activities as a result of emotional and physical problems. SF-36 mean scale scores were not found to be affected by age, gender or education level. However, especially general health, mental health and vitality were observed to be affected by providing care for longer periods of time. Our study has limitations, including lack of data on income and the employment status of caregivers. Unemployment and low income may also contribute to depression and anxiety. Some of our nonsignificant results could be a result of type II statistical error due to the low sample size of male caregivers. The originality of our study is that it is the first study performed by a home health care center on this concept in Turkey. There are just a few studies on specific groups like Alzheimer disease and similar chronic conditions, such as cancer (Evci et al., 2012; Yılmaz et al., 2009). Our study was not limited to a specific subgroup of caregivers. Since 2010, the Turkish Ministry of Health has provided home health care, a positive improvement in the health care system. Our study unveils the fact that not only do the long-term patients have needs, but the caregivers also have needs. From that perspective, our study is valuable. New coping strategies and appropriate interventions should be made for those caregivers who are overwhelmed. In order to increase student awareness, the inclusion of that content in primary care residents and nursing curricula is recommended. Further research is needed to better understand the caregivers' lived experiences. Qualitative research using depth interviews may be used. Understanding caregivers' experiences and coping reactions will assist healthcare workers, and especially nurses, to develop strategies to reduce caregiver burden and promote better coping skills for challenges caregivers face. In the literature, some evidence exists for the effectiveness of respite care, interventions at the individual caregiver level, group support and information and communication technology. Overall, the effect of caregiver support interventions is small and also inconsistent between studies (Cassie & Sanders, 2008; Dellasega & Zerbe, 2002; Mason et al., 2007; Shaw et al., 2009). Caregivers exist all over the world, but their support needs may be different because of cultural habits and the healthcare system of the country in which they reside (Lopez-Hartmann, Wens, Verhoeven, & Remmen, 2012). As a result, our study was the first to report a high prevalence of depressive and anxiety symptoms and a decline in QoL of the caregivers in Turkey. Currently in our country, there are no community services or support groups for caregivers. The effectiveness of public policies to provide formal support for the care receivers and caregivers, and the creation of support groups, may contribute to the overall family well-being. In further research, special attention should be given to the influence of caregivers' characteristics on the outcome. According to those outcomes, we will be able to formulate effective home care models that provide support for caregivers in Turkey.
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Please cite this article as: Yıkılkan, H., et al., Depression, Anxiety and Quality of Life in Caregivers of Long-Term Home Care Patients, Archives of Psychiatric Nursing (2014), http://dx.doi.org/10.1016/j.apnu.2014.01.001
Contents lists available at ScienceDirect
Archives of Psychiatric Nursing journal homepage: www.elsevier.com/locate/apnu
Depression, Anxiety and Quality of Life in Caregivers of Long-Term Home Care Patients Hülya Yıkılkan ⁎, Cenk Aypak, Süleyman Görpelioğlu Department of Family Medicine, Dışkapı Yıldırım Beyazıt Training and Reseach Hospital, Ankara, Turkey
a b s t r a c t Family caregivers of patient in long-term care facilities often have high rates of stress, burden and psychological illness. A descriptive study was carried out with 63 caregivers. Caregivers were asked to complete a demographic questionnaire, Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI) and Short form 36 (SF-36), which measures health related quality of life (QoL). The majority of caregivers were female (79.4%), and most often the daughter of the patient in long-term care (47.6%). The mean BDI score of the sample was 18.8, and the mean BAI score was 20.0. Almost all the mean scores referring to the QoL were decreased (lower than 50), with the exception of mental health. On the SF-36 questionnaire, the lowest scores were observed on the role-emotional, role-physical, social functioning and vitality scales of the SF-36. © 2014 Elsevier Inc. All rights reserved.
Turkey has a young population, with 24.9% of the population being under 14 years old; however, projections suggest that the population will be aging rapidly in the near future. The current ratio of the population aged over 65 is 7.5% (Turkish Statistical Institute, 2013), and expected to be 16% in 2025 (Savaş, Karahan, & Saka, 2002). Thus, healthcare needs are expected to increase. The provision of medical care and rehabilitation at home, as opposed to learn-term care facilities for the elderly or bedridden, is a common practice in many developed countries. Home care is a popular option, as it reduces hospitalization and healthcare costs (Sales, 2003). An increased number of individuals with complex healthcare needs are being cared for at home by their families. This shift from long-term care facility, to home care, places an increased demand on family caregivers. A study that investigated patients in a family practice demonstrated that 21% of the patients had provided care for persons with chronic medical conditions (Andolsek et al., 1988). The task of caregiving results in additional responsibilities on the caregivers' daily life, and occupies the caregivers' time, energy, and attention (Leow & Chan, 2011). Caregiver burden is a term that covers all the physical, emotional and financial tolls of providing care (Parks & Novielli, 2000). High rates of stress, burden and psychological illness are observed in family caregivers who provide for long-term home care patients (Beinart, Weinman, Wade, & Brady, 2012; Kasuya, Polgar-Bailey, & Takeuchi, 2000). Schulz found that caregivers who were providing care often experienced burden and strain, and had a 63% higher risk of mortality than non-caregivers (Schulz & Beach, 1999).
⁎ Corresponding Author: Hülya Yıkılkan, MD, Dışkapı Yıldırım Beyazıt Training and Research Hospital, Irfan Basbug cad. Diskapi, Ankara, Turkey. E-mail address: [email protected] (H. Yıkılkan).
Professional health care providers can have a significant impact on the health and well-being of family caregivers as well as those cared for by family. In Turkey, professional home health care has been provided since 2010, mostly by nurses under the supervision of a primary care physician. While working with family caregivers, the primary care physician and nurse often see a burdened group of caregivers. By assessing the caregiver's level of burden, including the issue of depression, the health provider can identify those who are at high risk for physical and emotional problems (O'Brien, 2000). Research has consistently reported that increased caregiver burden is associated with a decline of well-being and quality of life (QoL). Song et al. showed that family caregivers of patients with terminal cancer experience mental health problems and deterioration of health-related QoL (Song et al., 2011). Results of a study by George and Gwyther indicated that, relative to random community samples, family caregivers of demented adults were most likely to experience problems with mental health and social participation (George & Gwyther, 1986). Payne et al. showed that 33 of 39 caregivers of patients in palliative care scored above the threshold for psychological distress (Payne, Smith, & Dean, 1999). In Turkey, there are limited studies about burnout of caregivers of groups such as dementia or cancer patients. Hacialioglu et al. studied the QoL of caregivers of cancer patients in the east of Turkey, using the World Health Organization Quality of Life-Short Form, Turkish Version (Hacialioglu, Ozer, Yilmaz Karabulutlu, Erdem, & Erci, 2010). QoL scores of those feeling unhealthy during the last 2 weeks were low in every domain. Karabulutlu et al. studied a total of 150 caregivers of cancer patients, and found the prevalence of anxiety and depression to be 46% and 72%, respectively (Karabulutlu, Akyıl, Karaman, & Karaca, 2013). In fact, physicians and nurses in primary care tend to work with a broad range of caregivers and patients, irrespective of their diagnosis. There are no studies about the
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Please cite this article as: Yıkılkan, H., et al., Depression, Anxiety and Quality of Life in Caregivers of Long-Term Home Care Patients, Archives of Psychiatric Nursing (2014), http://dx.doi.org/10.1016/j.apnu.2014.01.001
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H. Yıkılkan et al. / Archives of Psychiatric Nursing xxx (2014) xxx–xxx
depression, anxiety and the QoL of caregivers for long-term care home patients in Turkey. The aim of our study was to assess depression, anxiety and the QoL of long-term caregivers without a limitation of a specific subgroup of caregivers. In addition, we aimed to bring awareness of caregiver burden to professional healthcare workers. MATERIAL AND METHODS
Statistical Analysis The data obtained from the study was analyzed using Statistical Package for Social Sciences version 18 for Windows. Descriptive statistics are presented as mean ± standard deviation, range and frequency (% values). Chi square test was used for categorical variables and student's t test for normally distributed data with equal variances. The Mann–Whitney U-test was used if the variables do not show a normal distribution. Statistical significance was set at P b 0.05.
Study Design Our study design is a descriptive cross-sectional study. Study was carried out in a home health care center of a research hospital in Ankara. Ankara is the capital city of Turkey, and our center serves the greatest number of home care patients in Ankara. Between September and December 2012, there were 161 new applications to the center. Caregivers of home care patients were consecutively invited to participate in this questionnaire-based study. Nurses gave an information letter and a consent form to the eligible caregivers. Caregivers who consented to participate were thereafter more thoroughly informed by the first author, who also provided the structured questionnaires. Completed questionnaires were collected on the next home visit by a representative of the home health care center. Inclusion criteria for caregivers were: age ≥18 years, at least 6 months of care provided, ability to speak, read, and write Turkish, and providing written consent. Patients with a known psychiatric history were excluded from the study. Of 161 eligible caregivers, 38 declined to participate; 11 consented but did not return the questionnaire, 32 were non-native speakers and 17 were illiterate. The present study protocol was accepted by the ethics and research committee of our hospital. Outcome Measures Caregivers were asked to complete a demographic questionnaire, Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI) and Short form 36 (SF-36) (SF-36), which measures health related QoL. Reliability and validity of Turkish version of the SF-36 has been previously established (Kocyigit, Aydemir, Fisek, Olmez, & Memis, 1999). The SF-36 evaluates QoL in eight domains related to physical and mental health, and each variable ranges from 0 to 100 points, with zero being the worst and 100 the best possible score. Depressive symptoms were evaluated by the BDI which was developed by Beck (Beck, Ward, & Mendelson, 1961) and adapted to Turkish language by Hisli (Hisli, 1989). It has not been validated specifically for caregivers, however for non-psychiatric Turkish populations, the alpha range is 0.55–0.73 (mean = 0.60). BDI is a self-reported scale, with 21 items, that measure emotional, somatic, cognitive, and motivational symptoms seen in an individual with depression. The aim of the scale is not to diagnose depression, but to objectively determine the severity of the depressive symptoms. BDI scores greater than or equal to 17 (total score N 28 signifies severe depression) have been reported to indicate depression that may require treatment, with more than 90% accuracy. Anxiety symptoms were evaluated by the BAI, which was developed by Beck (Beck, Epstein, & Brown, 1988), and a validated version of the BAI was adapted to the Turkish population by Ulusoy (Ulusoy, Erkmen, & Sahin, 1998). The BAI's internal consistency (Cronbach's Alpha) ranges from 0.92 to 0.94 for adults, and test–retest reliability is 0.75. The BAI is a self-administered instrument with 21 items that cover the most frequent anxiety symptoms observed in clinical practice. Each item was scored 0, 1, 2 or 3, with higher scores denoting an increasing severity of symptoms. Total scores can be categorized as minimal (0–7), mild (8–15), moderate (16–25), and severe (26–63).
RESULTS A total of 63 caregivers participated in the study. The mean age of the participants was 47.4 ± 11.9 years (range: 20–74 years). The mean age of the female caregivers (n = 50) was 45.7 ± 12.2, while that of male caregivers (n = 13) was 53.8 ± 8.4 (P = 0.02). The median duration of time spent providing care was 4 years (range: 1– 32 years). The majority of caregivers were female (79.4%), and the daughter of the patient (47.6%). Socio-demographic characteristics of the caregivers are shown in Table 1. The mean BDI score of the sample was 18.8 with 58.7% of the scores meeting the criteria for at least mild depression and 12.7% meeting the criteria for severe depression. With higher education and a lower duration of caregiving, the mean BDI scores were statistically significantly lower (P = 0.04, P = 0.02 respectively). The mean BAI score of the sample was 20.0 with 84.1% of the scores meeting the criteria for at least mild anxiety and 30.2% meeting the criteria for severe anxiety. Caregiving for 3 or more years was represented by an even higher incidence of anxiety (P = 0.001). The distribution of mean BDI and BAI scores according to gender, age, education and duration of caregiving is shown in Table 2. The mean scores for QoL in the categories included in SF-36 were 53.1 ± 18.6 for mental health, 33.0 ± 26.8 for social functioning, 48.5 ± 27.0 for bodily pain, 28.6 ± 37.9 for role-physical, 33.3 ± 22.1 for vitality, 44.6 ± 22.8 for general health, 25.4 ± 36.2 for role emotional and 48.5 ± 29.2 for physical functioning. Statistically significant differences for general health (P = 0.03) and mental health (P = 0.00) were observed for caregiving more than 2 years and additionally for vitality (P = 0.01) for caregiving more than 3 years. Statistically significant differences in SF-36 mean scale scores were not observed as a function of age, gender and education. DISCUSSION The primary finding of this study is that the majority of family caregivers experience high levels of burden, a finding consistent with Table 1 Socio-Demographic Characteristics of the Caregivers Mean ± SD/median Age (years) Length of providing care (years)
Range: 20–74 Range: 1–32
Gender
Female Male Primary (5) Middle (8) High (11) University Daughter Daughter-in-law Son Spouse Son-in-law Mother
47.4 ± 11.9 4⁎ Number (%)
Education (years)
Relation to long-term patient
50 (79.4) 13 (20.6) 36 (57.1) 4 (6.3) 10 (15.9) 13 (20.6) 30 (47.6) 11 (17.5) 10 (15.9) 9 (14.3) 2 (3.2) 1 (1.6)
⁎ Median.
Please cite this article as: Yıkılkan, H., et al., Depression, Anxiety and Quality of Life in Caregivers of Long-Term Home Care Patients, Archives of Psychiatric Nursing (2014), http://dx.doi.org/10.1016/j.apnu.2014.01.001
H. Yıkılkan et al. / Archives of Psychiatric Nursing xxx (2014) xxx–xxx Table 2 Distribution of the Mean Beck Depression Inventory (BDI) and Beck Anxiety Inventory (BAI) Scores According to Gender, Age, Education and Duration of Caregiving
Gender Age (years) Length of providing care (years) Duration of caregiving (years) Total
n
BDI scores (mean ± SD)
Female Male b45 ≥45 5 N5
50 13 30 33 36 27
18.8 18.8 17.6 19.9 20.8 15.9
b3 ≥3
18 45
14.4 ± 8.3 20.5 ± 9.8
63
18.8 ± 9.8
± ± ± ± ± ±
9.8 10.2 10.1 9.5 10.0 8.8
P value 0.99 0.36 0.04
0.02
BAI scores (mean ± SD) 20.5 18.3 21.3 18.9 20.8 19.0
± ± ± ± ± ±
12.4 11.6 13.5 10.9 11.0 13.8
13.3 ± 6.5 22.7 ± 12.9
P value 0.56 0.44 0.57
0.00⁎
20.0 ± 12.2
⁎ Mann–Whitney U test.
the literature (Annestedt, Emstahl, Ingvad, & Samuelsson, 2000; Papastavrou, Kalokerinou, Papacostas, Tsangari, & Sourtzi, 2007; Tornatore & Grant, 2002; Winslow & Carter, 1999). In Turkey, the prevalence of depression in the general population is 7.9% and 5.8%, in women and men, respectively (Kılıç, 1998). In our study we found that 58.7% of caregivers had depressive symptoms and 12.7% had severe depression. According to a study of patients with Alzheimer's type dementia, 68% of caregivers were highly burdened, and 65% exhibited depressive symptoms (Papastavrou et al., 2007). In our study, we were unable to find any significant difference of burden between genders. According to a meta-analysis that integrates results from 229 studies on gender differences in caregiver psychological and physical health and caregiving stressors, contrary to common preconceptions, gender differences in caregiving variables were small to very small (Pinquart & Sörensen, 2006). Payne et al. reported that female caregivers experienced more psychological morbidity and strain (Payne et al., 1999). This observation was not confirmed in our study. Explanations for this may include biased samples, or a low number of male respondents in our study. Types of diseases and cultural differences may be an alternative explanation of the differences. Our results show that a caregiver's level of education is correlated with their burden. Data from other studies are in accordance with our findings (Contador, Fernández-Calvo, Palenzuela, Miguéis, & Ramos, 2012; María García-Alberca, Pablo Lara, & Luis Berthier, 2011; Sansoni, Vellone, & Piras, 2004). We found that caregivers with a higher education had lower levels of burden. It seems that those caregivers have developed more effective skills in managing the demand associated with care of a family member and their own stress. A longer duration of caregiving seems to be related to increased burden in both depressive and anxiety symptoms (P = 0.02, P = 0.00 respectively). A high level of anxiety in caregivers may be related to concerns about the future, coping with the situation, fear of loss and being alone, sole responsibility for children, or unfamiliar tasks at home (Grov, Dahl, Moum, & Fosså, 2005). In addition to all those factors, unpredictable time of caregiving may contribute to increased burden. According to our results, the majority of caregivers were women (79.4%), often being the daughter (47.6%) of the patient receiving the care. In Turkish society, the traditional view is that caregiving is primarily a family responsibility, with a particular emphasis of this place on women. Religious beliefs, such as the filial piety also contribute to that social assumption. The caring role is ascribed to families, and many women undertake this not by choice, but, because it is socially imposed on them. It is also expected that women will fulfill the difficult task of care without preparation or knowledge, because it is claimed to be characteristic of their ‘female nature’ (Connell, Janevic, & Gallant, 2001). The child or children of the elderly
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find themselves with demanding care obligations. Caregivers sacrifice themselves to care for their parents, resulting in strain on their physical and mental health (Yang, Hao, George, & Wang, 2012). Almost all the mean scores referring to the QoL were decreased (lower than 50), with the exception of mental health. This is in contrast to George et al. and Grov's observations of reduced QoL in mental health in caregivers (George & Gwyther, 1986; Grov et al., 2005). That may be related to their subgroup of caregivers, who were tending to cancer patients. The lowest scores were observed the roleemotional, role-physical, social functioning and vitality scales of the SF-36. The results emphasized that caregivers had problems with work or other daily activities as a result of emotional and physical problems. SF-36 mean scale scores were not found to be affected by age, gender or education level. However, especially general health, mental health and vitality were observed to be affected by providing care for longer periods of time. Our study has limitations, including lack of data on income and the employment status of caregivers. Unemployment and low income may also contribute to depression and anxiety. Some of our nonsignificant results could be a result of type II statistical error due to the low sample size of male caregivers. The originality of our study is that it is the first study performed by a home health care center on this concept in Turkey. There are just a few studies on specific groups like Alzheimer disease and similar chronic conditions, such as cancer (Evci et al., 2012; Yılmaz et al., 2009). Our study was not limited to a specific subgroup of caregivers. Since 2010, the Turkish Ministry of Health has provided home health care, a positive improvement in the health care system. Our study unveils the fact that not only do the long-term patients have needs, but the caregivers also have needs. From that perspective, our study is valuable. New coping strategies and appropriate interventions should be made for those caregivers who are overwhelmed. In order to increase student awareness, the inclusion of that content in primary care residents and nursing curricula is recommended. Further research is needed to better understand the caregivers' lived experiences. Qualitative research using depth interviews may be used. Understanding caregivers' experiences and coping reactions will assist healthcare workers, and especially nurses, to develop strategies to reduce caregiver burden and promote better coping skills for challenges caregivers face. In the literature, some evidence exists for the effectiveness of respite care, interventions at the individual caregiver level, group support and information and communication technology. Overall, the effect of caregiver support interventions is small and also inconsistent between studies (Cassie & Sanders, 2008; Dellasega & Zerbe, 2002; Mason et al., 2007; Shaw et al., 2009). Caregivers exist all over the world, but their support needs may be different because of cultural habits and the healthcare system of the country in which they reside (Lopez-Hartmann, Wens, Verhoeven, & Remmen, 2012). As a result, our study was the first to report a high prevalence of depressive and anxiety symptoms and a decline in QoL of the caregivers in Turkey. Currently in our country, there are no community services or support groups for caregivers. The effectiveness of public policies to provide formal support for the care receivers and caregivers, and the creation of support groups, may contribute to the overall family well-being. In further research, special attention should be given to the influence of caregivers' characteristics on the outcome. According to those outcomes, we will be able to formulate effective home care models that provide support for caregivers in Turkey.
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Please cite this article as: Yıkılkan, H., et al., Depression, Anxiety and Quality of Life in Caregivers of Long-Term Home Care Patients, Archives of Psychiatric Nursing (2014), http://dx.doi.org/10.1016/j.apnu.2014.01.001
