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Background Family caregivers experience significant burden in taking care of their patients with schizophrenia. Research on predictors of caregiver burden in India, where families are the primary caregivers of schizophrenia patients, is lacking. Aim To study the predictors of burden experienced by the family caregivers of first admission in-patient schizophrenia patients in India. Methods and Materials Family caregivers of 137 schizophrenia patients admitted to an in-patient facility of a hospital in south India were interviewed using the Burden Assessment Schedule. The coping, knowledge about schizophrenia, perceived social support of the caregivers and illness severity, psychopathology and disability experienced by the patients were also assessed. Statistical Analysis: Bivariate correlation and multivariate regression analysis were used to study the association of different factors on burden. Results Duration of illness and levels of psychopathology and disability had significant direct correlation with total burden score; perceived social support had significant inverse correlation with total burden score. There was a high correlation between psychopathology and disability (p < 0.001). Two separate regression analysis, each including total PANSS score (psychopathology) or total IDEAS score (disability) showed that duration of illness and perceived social support were significant predictors of burden in addition to psychopathology and disability. Conclusion During the first hospitalization, in addition to symptom reduction and disability limitation, focus should be on enhancing social support in order to reduce caregiver burden among family members of schizophrenia patients.

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... 21(p89) This issue was especially problematic for female caregivers, who were the predominant caregivers in the studies (which is consistent with the cultural norms of caring roles). 5,[22][23][24] The gender issues involved in informal caregiving are discussed further below. ...
... 4(p1171) Informal caregivers were frustrated as they felt health care workers did not recognise their contribution to patient care. 18,23,31 The caregivers expressed a desire for a familycentred approach to care, where they would be active participants in decisions, but felt unable to raise this with health workers, who often stereotyped them as incompetent. 24 Some informal caregivers felt reluctant to ask the nurses and doctors questions because they were afraid it would result in a reprimand. ...
... 37(p23) The death of a loved one were traumatic for some informal caregivers and contributed to their emotional burden. 23,36 Caregivers described how caregiving had imposed restrictions on their lives and prevented them from engaging in social activities. 30 Stressors included a lack of independence and time to engage in social activities due to their having to be at the hospital. ...
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Objective In low- and middle-income countries, informal caregivers frequently stay in hospitals and perform patient care tasks typically performed by nurses in other contexts. This article reviews qualitative research on these informal caregivers, to gain insight and understanding of their experiences. Methods We undertook a qualitative meta-synthesis. Relevant literature was identified through searches of electronic databases in 2021. Thematic analysis was conducted to facilitate the identification of conceptual relationships to formulate synthesised findings. Results Twenty-four studies met the inclusion criteria – 13 from Sub-Saharan Africa, five from Bangladesh, two from India, two from Iran, one from Brazil and one from Peru. Three themes were generated from the meta-synthesis: (1) The unwelcome but tolerated guest, (2) Enduring personal sacrifice and (3) Fulfilling familial obligations. These themes emphasised the significant burden associated with the hospital caregiving experience and highlighted the implicit reliance on informal caregivers in low- and middle-income countries. Conclusions Informal caregivers perform an essential caregiving role, yet occupy a peripheral and voluntary space in hospitals. There is a clear need to support informal caregivers so that they can safely perform their tasks.
... Families of PwS suffer from a heavy burden, and family caregivers face the challenge of balancing caretaking responsibilities with their own lives [13]. They may experience a wide variety of caregiving burdens in terms of financial [6,14,15], physical [16,17], mental [15,18,19], daily life [7,13], and social aspects [20,21]. For instance, previous literature has documented different types of psychological distress among family caregivers of PwS such as perceptions of guilt, a sense of disgrace/shame (also described as 'losing face'), embarrassment, grief, worry, and resentment [17,19]. ...
... This is what sociologists call 'emotional labour' [50]: Caregivers learn to manage their experiences and expressions of emotions when interacting with the patient in order to perform their role as a caregiver or family member more effectively, but doing so takes a toll on them. Moreover, in line with previous research indicating the financial impacts posed by schizophrenia [6,14,15], the financial burden not only increased the degree of psychological strain among family caregivers, but also affected family decisions in many regards. Certainly, the family caregivers in this study reported facing difficulties in coping with their relationships with neighbours due to the stigma of mental disorder, or out of fear that the PwS would exhibit troublesome behaviour outside the family. ...
... Certainly, the family caregivers in this study reported facing difficulties in coping with their relationships with neighbours due to the stigma of mental disorder, or out of fear that the PwS would exhibit troublesome behaviour outside the family. This finding is in line with past studies documenting a strong sense of social isolation or a considerable degree of pressure on social life and social interactions among caregivers of PwS [7,14,15,19]. Hence, identifying caregivers' external and internal stressors is crucial to understanding their needs. ...
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Background We aimed to explore the long-term caregiving experiences of family caregivers of people with schizophrenia (PwS) in terms of both positive and negative aspects. Method Utilising a purposive sampling method, we conducted in-depth interviews with 20 family caregivers of persons who had suffered from schizophrenia for more than 20 years. We empirically investigated their retrospective experiences of caregiver-patient interactions during a long period of family caregiving. We audio-recorded and transcribed the interviews into text. We thematically coded and analysed the transcribed text using a four-phase method of theme development. Findings Schizophrenia might not only generate a caregiving burden, affect caregivers’ psychological status, and accordingly influence their coping strategies, but also have short- or long-term patient-related consequences. Discussion Family caregivers should develop their stress management skills to cope with relevant life changes and increase their knowledge of the potential psychological consequences for care recipients resulting from negative caregiving strategies during home-based practice. Care recipients with schizophrenia in a relatively stable status should be empowered to take care of themselves. More effective family-based interventions for psychiatric nursing or individualised training for symptom management should be tailored to serve families’ diverse needs.
... The caregiving burden was higher in female than male caregivers. This finding is consistent with the results of the systematic review conducted by Yükü and Derleme (2017); however, in some individual studies (Arun et al., 2018;Jagannathan et al., 2014;Siddiqui & Khalid, 2019;Stanley et al., 2017), the association between gender and caregiving burden was not statistically significant. Women are usually predominant caregiver for family members with chronic medical conditions, so they could experience high caregiving burden than men (Swinkels et al., 2019). ...
... This finding is consistent with previous research showing that caregivers of patients with schizophrenia who have higher education experience less caregiving burden than those with low or no education (Hidru et al., 2016;Jagannathan et al., 2014;Siddiqui & Khalid, 2019;Yükü & Derleme, 2017 (Rahmani et al., 2018). Financial strain is prevalent among these families due to a lack of support from the government (Chen et al., 2019;Tamizi et al., 2020;Weinmann & Koesters, 2016). ...
... The regression model results also indicated that the caregiving burden was higher in caregivers who provided caregiving constantly and for a long duration. This finding supports previous research that the length of caregiving is inversely related to caregiving burden (Alexander et al., 2016;Hidru et al., 2016;Jagannathan et al., 2014), yet Stanley et al. (2017) did not find a statistically significant association between these variables (Stanley et al., 2017). It is possible that with the increase in the duration of disease and treatment, the disease stabilizes, and caregivers learn to cope with their role (Kate et al., 2013); however, this relationship is not linear, and the caregiving burden intensifies with long-term and constant caregiving. ...
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Aim: Our study aimed to investigate the caregiving burden and its associated factors in family caregivers of patients with schizophrenia. Design: Correlational study. Method: Using the convenience sampling method, 215 caregivers were recruited from outpatient clinics affiliated with a tertiary referral psychiatric hospital in Iran. The caregiving burden was measured by the Zarit Burden Interview (ZBI-22), and associations between caregiving burden and potential factors were examined using multiple regression analysis. We used the STROBE checklist to report the results. Results: Family caregivers of patients with schizophrenia reported a high level of caregiving burden, with 38.2% of the caregivers perceiving severe burden relating to their role. In the regression analysis, age, gender, educational level, income, job loss due to caregiving, relationship with patient, disease duration and frequency of caregiving were statistically significant predictors of caregiving burden. The regression model explained 54.4% of the variance of caregiving burden.
... 11 Caregiver burden has been studied for different SMIs and burden predictors have often been considered as not receiv-ing help with caregiving, lack of social support, lower-income, older age, lower level of education, depression, having another family member needing care, and more days in contact with the patient as for the family characteristics, and duration of illness, early onset of the illness, disability or level of functioning, number of hospitalizations, violent behavior, suicidal behavior, comorbid illnesses, and more relapse regarding the illness characteristics. [12][13][14][15][16][17][18][19][20][21][22] When the data of longitudinal and cross-sectional studies are evaluated in conjunction, the duration of the illness and the level of disability stand out in terms of contributing to the family burden. It was shown that the caregiver burden for chronic illnesses was not significantly associated with the clinical changes in symptoms over time. ...
... Patients' functional impairment, sometimes called disability or poor functioning, and self-destructive behavior called in some studies as self-abusive behavior were also reported as predictive factors for caregiving burden by other studies for both ASD and schizophrenia. 3,12,15,16,28,29,31,42,47 That means family members of patients who needed to provide more assistance for daily functioning were more likely to have a higher caregiver burden. 28 In conclusion, the results of the study pointed out that the patients' self-destructive behaviors and need for self-care, family members' levels of income, self-stigma, and depression are determinative in terms of family burden. ...
... 48 Additionally, social support and social stigma which are possible predictive factors for the family burden was not examined in this study. 1,12,15,18,44 Lastly, because this study is a cross-sectional design it cannot give a causal relationship between caregiver burden and its correlates. Future studies should employ prospective design to clarify this issue. ...
Article
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Objective There is no study comparing schizophrenia and autism spectrum disorders (ASD) in terms of caregiver burden. This study aims to compare the caregiver burden among family members of patients with schizophrenia and ASD and investigate the predictive factors. Methods A cross-sectional study with the family members living with and/or providing care to their patients was carried out. A sociodemographic form, the Beck Depression Inventory, the Self-Stigma Inventory for Families, and the Zarit Caregiver Burden Scale were utilized. Regression analyses were conducted to determine the predictive factors for higher burden. Results Caregiver burden in ASD was significantly higher than in schizophrenia. Regression analysis showed that the predictors of high caregiver burden were the need for self-care (OR=3.6), self-destructive behaviors (OR=3.4), self-stigma (OR=1.1), depression (OR=1.1), and level of income (OR=1.0) for all family members. When the diagnosis was removed from the equation, the factors determining the high burden did not change. Conclusion This study suggests that characteristics of the illness are stronger predictors than family members’ characteristics in explaining the high caregiver burden for both illnesses. Psychological, social, and economic supports should be provided for families to help alleviate their caregiving burden.
... Caring for a family member with schizophrenia requires considerable time, energy, and money from the family caregivers over a prolonged period, which may result in increased caregiver burden and psychological distress (15,16). Numerous studies have demonstrated a high level of burden among caregivers of PLSs (12,15,17,18) and psychological distress, such as stress, anxiety, and depression (19). ...
... Caring for a family member with schizophrenia requires considerable time, energy, and money from the family caregivers over a prolonged period, which may result in increased caregiver burden and psychological distress (15,16). Numerous studies have demonstrated a high level of burden among caregivers of PLSs (12,15,17,18) and psychological distress, such as stress, anxiety, and depression (19). For instance, more than half of caregivers report a moderate to severe level of caregiver burden (18), whereas the prevalence of psychological distress is as high as nearly 80% (1,20). ...
... For caregivers, the key element of psychoeducation lies in improving knowledge and skills in caregiving (34). However, inconsistent findings about the correlations between caregiving knowledge and skills and caregiver burden have been reported by Sefasi et al. (35) and Jagannathan et al. (15). Sefasi et al. found caregivers of PLSs with more knowledge tended to bear greater burden, whereas Jagannathan et al. suggested there was no relationship of caregiving knowledge with burden. ...
Article
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Background: There is a lack of clarity regarding the correlation of caregiving knowledge and skills with caregiving experiences of people living with schizophrenia (PLSs). To address this gap, this comprehensive study examines the relationships of caregiving knowledge and skills to the primary family caregiver's experiences of burden, psychological well-being (stress, anxiety, depression, caregiving rewarding feelings), and coping styles in China. Methods: A total of 395 primary family caregivers of PLSs were enrolled in a cross-sectional study between May 2019 and September 2019. Each family caregiver was independently assessed on caregiving knowledge and skills, caregiver burden, and psychological well-being, as well as coping styles. Results: A higher level of caregiving knowledge and skills was positively correlated with less stress ( b = −0.48, P < 0.001), anxiety ( b = −0.23, P = 0.029), depression ( b = −0.29, P = 0.013), and more caregiving rewarding feelings ( b = 0.54, P < 0.001). Also, caregivers with more knowledge and skills were more inclined to adopt positive coping strategies ( b = 0.44, P < 0.001). Despite these differences, caregivers with different levels of caregiving knowledge and skills reported comparable caregiver burden ( b = 0.11, P = 0.705) and the use of a passive coping style ( b = 0.10, P = 0.169). Conclusion: Caregiving knowledge and skills are a reliable predictor of psychological well-being and active coping among the primary family caregivers of PLSs. These findings inform the development of psychoeducational interventions to support family caregivers of PLSs.
... The association between disease-related factors and family burden has been extensively researched in the literature, with patient function, duration of illness and treatment being the most frequently studied factors. For patient function, although contradictory results have been reported as regard to whether positive or negative symptoms are more burdensome [10,[15][16][17], consistency exists in that less severe symptoms and higher level of function results in lower family burden [15,16,[18][19][20]. For duration of illness, the majority of study documented a decline in family burden over time [20][21][22], yet some studies found no effect of time [18]. ...
... Patient factor. Higher patient function negatively predicted family burden, which was consistent with existing literature [10,15,19]. The result is self-explanatory considering that managing the ill behaviors and keeping the normal function of patients have always been the main focus and major needs of family caregivers [19]. ...
... Higher patient function negatively predicted family burden, which was consistent with existing literature [10,15,19]. The result is self-explanatory considering that managing the ill behaviors and keeping the normal function of patients have always been the main focus and major needs of family caregivers [19]. The result that family with a patient being admitted for over 3 times was a strongest predicting factor of family burden was a novel finding that has scantly been reported in other studies. ...
... This is in concordance with many studies from India as well as from the west, which have found high levels of perceived burden in caregivers of patients with schizophrenia. [13][14][15][16][17][18][19] We found a mean score of 38.38 while assessing caregiver burden on ZBI. Those studies which have previously looked for caregiver burden using the same instrument of ZBI have found a wide variation in scores of caregiver burden. ...
... There are many studies which have shown a positive correlation between PANSS scores and caregiver burden. [11,19] However, some studies have not found any significant correlation between PANSS scores and caregiver burden. [10,26] More symptomatic a patient more will be impairment in his functioning, which ultimately will result in a greater degree of responsibility on their caregivers and thus increasing their caring burden. ...
... This is in contradiction with previous studies that have shown higher PANSS scores predicting higher burden on caregivers in several domains. [19] However, in subscales of PANSS, negative symptom scale significantly predicted burden on caregivers. This is in accordance with many studies from India as well as outside India which have found psychopathology in schizophrenia patients predicting caregiver burden. ...
... This is in concordance with many studies from India as well as from the west, which have found high levels of perceived burden in caregivers of patients with schizophrenia. [13][14][15][16][17][18][19] We found a mean score of 38.38 while assessing caregiver burden on ZBI. Those studies which have previously looked for caregiver burden using the same instrument of ZBI have found a wide variation in scores of caregiver burden. ...
... There are many studies which have shown a positive correlation between PANSS scores and caregiver burden. [11,19] However, some studies have not found any significant correlation between PANSS scores and caregiver burden. [10,26] More symptomatic a patient more will be impairment in his functioning, which ultimately will result in a greater degree of responsibility on their caregivers and thus increasing their caring burden. ...
... This is in contradiction with previous studies that have shown higher PANSS scores predicting higher burden on caregivers in several domains. [19] However, in subscales of PANSS, negative symptom scale significantly predicted burden on caregivers. This is in accordance with many studies from India as well as outside India which have found psychopathology in schizophrenia patients predicting caregiver burden. ...
Article
Background: With a shift in treatment and care of schizophrenia over the years, with more and more patients being treated on an outpatient basis and cared in community, caregivers experience distress in psychological and emotional health, have reduced social contact, have financial difficulties, have low life satisfaction, and have poor mental and physical health. Aims: The aim is to understand the quality of life (QoL) and the extent of burden perceived by caregivers while caregiving a family member with a diagnosis of schizophrenia. Materials and Methods: This was a cross-sectional study. A total of 75 schizophrenia patients and their caregivers were included in this study. Standardized instruments were administered to patients as well as to caregivers to collect data regarding symptomatology in patients and perceived burden and QoL in their caregivers. Results: The mean age of caregivers was 40.49 ± 12.65 years, and of patients was 37.45 ± 9.55. The mean score on the Schizophrenia Caregiver Quality of Life (S-CGQoL) questionnaire was 44.8 ± 8.67. 76% of caregivers had a score <50. QoL was significantly correlated with burden on caregivers (r = −0.478; P = 0.0001) and duration of illness of patients (r = 0.243; P = 0.014). The mean score on Zarit Burden Interview (ZBI) was 38.28% ±11.19. 64% of caregivers perceived mild-to-moderate burden. Caregivers burden was correlated with manifestation of negative symptoms in patients (r = 0.287; P = 0.013). Negative symptom scores significantly predicted the burden perceived by caregivers. Conclusion: Caregivers of schizophrenia patients experience a considerable level of burden which with significant correlations between negative symptoms in patients and scores on ZBI. Negative symptoms in patients were the only predictor of the burden on caregivers. Low QoL with a score of <50 on S-CGQoL was present in two-thirds of caregivers. QoL was related positively to the duration of illness and negatively to the burden on caregivers.
... Despite the trend towards community-based mental health services, approximately 10-20% of persons with serious psychoses, such as schizophrenia, require treatment in inpatient psychiatric rehabilitation services [2]. Although patients are cared for at inpatient facilities, family caregivers continue to provide ongoing caregiver support [3,4]. Insufficient support from mental healthcare providers leave primary family caregivers feeling unprepared and untrained [5], which can generate tremendous caregiver burden and substantial disruption of daily lives [6][7][8]. ...
... Patients' characteristics are related to caregiver burden; however, findings are inconsistent as to what variables are most important. Characteristics of patients with schizophrenia that increase caregiver burden include being male [13]; being younger [14]; having impaired functioning or severity of psychopathology [3,14]; having multiple psychiatric hospitalizations [14,15]; and having a longer duration of mental illness [3,16]. In contrast, other studies have found no association between caregiver burden and patients' characteristics, including gender, psychiatric symptomatology, duration of mental illness, or number of psychiatric hospitalizations [3,6,7]. ...
... Patients' characteristics are related to caregiver burden; however, findings are inconsistent as to what variables are most important. Characteristics of patients with schizophrenia that increase caregiver burden include being male [13]; being younger [14]; having impaired functioning or severity of psychopathology [3,14]; having multiple psychiatric hospitalizations [14,15]; and having a longer duration of mental illness [3,16]. In contrast, other studies have found no association between caregiver burden and patients' characteristics, including gender, psychiatric symptomatology, duration of mental illness, or number of psychiatric hospitalizations [3,6,7]. ...
Article
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PurposeThis study aimed to examine correlates of caregiver burden and health-related quality of life (HRQoL) among primary family caregivers of individuals with schizophrenia in inpatient psychiatric rehabilitation facilities.MethodsA cross-sectional study was conducted with 157 Taiwanese primary family caregivers of individuals with schizophrenia residing in inpatient psychiatric facilities. Measures included socio-demographic questionnaires and clinical information, Mutuality Scale, Family Crisis-Oriented Personal Evaluation Scales, Zarit Burden Interview, and World Health Organization Quality of Life-brief version. To describe the degree of caregiver burden and domains of HRQoL, descriptive statistics were computed. Independent sample t test, one-way analysis of variance, and Pearson’s correlation analysis followed by multiple regression analyses were performed to determine correlations and relationships between characteristics of patients and primary family caregivers with caregiver burden and domains of HRQoL.ResultsPrimary family caregivers experienced mild to moderate caregiver burden and poor HRQoL. Primary family caregivers who were older and unemployed, caring for patient’s severe psychiatric symptoms, and had low monthly incomes, decreased mutuality, and fewer family coping strategies were associated with greater caregiver burden and poor HRQoL. Greater mutuality and family coping strategies of reframing and seeking spiritual support were the most significant factors in improving caregiver burden and all domains of HRQoL, respectively.Conclusion Family-focused interventions for caregivers of institutionalized persons with schizophrenia that include psychological support and peer support groups are recommended to enhance mutuality and family coping strategies, reduce caregiver burden, and improve HRQoL.
... The caregivers of patients with schizophrenia experience a heavier burden than other psychiatric disorders [4,7,8]. The family caregiver burden impresses the physical and mental health [2,9], social relationships [7,[9][10][11], and the financial life [7,9,10,12] of caregivers. Also, it is associated with psychological morbidity [7], less leisure time, workload, and burnout of caregivers [13]. ...
... The caregivers of patients with schizophrenia experience a heavier burden than other psychiatric disorders [4,7,8]. The family caregiver burden impresses the physical and mental health [2,9], social relationships [7,[9][10][11], and the financial life [7,9,10,12] of caregivers. Also, it is associated with psychological morbidity [7], less leisure time, workload, and burnout of caregivers [13]. ...
... The caregivers of patients with schizophrenia experience a heavier burden than other psychiatric disorders [4,7,8]. The family caregiver burden impresses the physical and mental health [2,9], social relationships [7,[9][10][11], and the financial life [7,9,10,12] of caregivers. Also, it is associated with psychological morbidity [7], less leisure time, workload, and burnout of caregivers [13]. ...
Article
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Background: Since the deinstitutionalization policy, in psychiatric hospitals, the care of patients with schizophrenia was left to their families which has been imposing a heavy burden on them. Family caregiver burden could have consequences for caregivers, patients, and the society. There is very little consensus on the definition and dimensions of the caregiver burden, which leads to a lack of consistency in the results of research. Thus, the present study was aimed to redefine the family caregiver burden of patients with schizophrenia. Methods: The databases PubMed, Scopus, Web of Science, MEDLINE (Via Ovid), ProQuest, SCI, Magiran, SID, and IranDoc will be searched from 1940 to 2018 using subject headings and appropriate terms in both Farsi and English languages. Also, gray literature and the reference list of included articles will be used to offer an appropriate definition of the family caregiver burden in patients with schizophrenia. Two independent reviewers will participate in study selection, data collection, and quality assessment steps. The result will be presented in tabular form, and meta-synthesis will be performed. Discussion: The result of this systematic review will help present the comprehensive definition of the family caregiver burden in patients with schizophrenia according to its evolutionary trend. Systematic review registration: PROSPERO CRD42018099372.
... Caregiver burden refers to quantifiable costs such as costs of care and loss of free time for caregivers. Informal care, the unpaid provision of care to a dependent person, is the backbone of care for people with a psychosocial disability (PPSD) in India and is predominantly performed by women (Balaji et al., 2012;Chatterjee et al., 2014;Jagannathan, Thirthalli, Hamza, Nagendra, & Gangadhar, 2014;Kate, Grover, Kulhara, & Nehra, 2013b;V Patel et al., 2006). Informal care is highly beneficial to society but can have a negative impact on the physical and mental health, and even mortality, of caregivers (del Rı´o-Lozano, Garcı´a-Calvente, Marcos-Marcos, Entrena-Dura´n, & Maroto-Navarro, 2013;Pinquart & Sorensen, 2006). ...
... There is very little research describing the experience of caregiving in LMIC settings (Addlakha, 1999;Ae-Ngibise, Doku, Asante, & Owusu-Agyei, 2015;Pompili et al., 2014;Viana et al., 2013), and particularly few accounts using a gender lens and qualitative methods (del Rı´o-Lozano et al., 2013;Opie, 1994). Recent studies of caregiver experiences in India have primarily been quantitative (Chadda, 2014;Jagannathan et al., 2014;Kate, Grover, Kulhara, & Nehra, 2013a;Kate et al., 2013b;Koujalgi & Patil, 2013;Kumar & Gupta, 2014), which may miss nuanced understandings related to gender relations (Opie, 1994;Patton, 2002). Understanding caregiver experiences allows the formation of policy and programme interventions to promote the agency and mental health of caregivers. ...
... Transcultural Psychiatry 0(0) food, and give medicines (Jagannathan et al., 2014;Kate et al., 2013b;Mehrotra, 2012). Gender inequalities are further evident in daily agricultural wages for women that are typically only 80% of those received by men (Raj, 2011), and in gender-based violence that affects one third of married women (Ahmad, Khan, Mozumdar, & Varma, 2015). ...
Article
Caring for a family member with a psycho-social disability can be both rewarding and burdensome. This study analyses the experiences of caregivers of people with psychosocial disabilities (PPSDs) in rural communities in North India using relational gender theory. In-depth interviews with 18 female and male caregivers of PPSDs probed the social, emotional and health impacts of their caregiving role. Nine themes were identified that were grouped under three meta-themes: intra-personal, inter-personal and institutional impacts. Under the intra-personal meta-theme, all caregivers experienced high tension, with women describing almost overwhelming stress. Women minimised their role as caregivers, and felt negative and hopeless about their futures, while men had a more positive view of the future and themselves. Embodied experiences of psychological and social distress were consistently described by women, but not by men. Within the interpersonal meta-theme, men experienced opportunity for social connection and social support that was seldom available to women. Interpersonal violence with other household members was described by both men and women. Within the institutional meta-theme, both men and women described strength in unity, and gestures leading to the reordering of gender relations. These findings underline the significant and diffuse impacts of a gender order that values males and disadvantages females as caregivers of PPSDs, with the asymmetry of a greater burden for women. The findings point to the urgent need for global mental health policies that support and empower caregivers and that strengthen gender equality.
... Due to these additional caregiving tasks, they often curtail on their social and leisure activities, and sometimes have to take leave from their jobs [1]. An extensive body of Indian research shows that providing care for a relative with mental illness is associated with considerable distress and burden for the family caregiver [3,[6][7][8][9] which in turn, associates with decreased quality of life [10]. ...
... However, the potential influence of these demographic variables on caregiver burden or quality of life were inconsistent across studies. A few studies have reported the association between caregivers' age and burden [30,31] or age and quality of life [32] or patients' gender and caregiver burden [31], while others have not [7,33]. Therefore, we do not anticipate these variables playing a strong confounding role in our study. ...
Article
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Although studies have examined caregiver centred intervention programmes on caregiver wellbeing, patient focused interventions to improve caregiver outcome is less studied, especially in India. We examined the impact of a patient focused, structured day care skill training programme on caregiver burden and quality of life in Indian context. Using a post-test only design, we conducted this study among a naturalistic cohort of 60 caregivers of patients with severe mental illness. The carers were recruited from two-day care skill training units and outpatient department of a tertiary mental health centre in Kerala. Caregiver burden and quality of life were measured using Burden Assessment Scale (BAS) and WHOQOL-BREF. Independent sample t test was used to compare the outcomes. Caregivers of patients attending the day-care skill training programme have reported significantly lower burden on various domains of BAS including physical & mental health (t = − 4.758; P < .001; d = − 0.829), external support (t = − 4.563; P < .001; d = − 0.778), caregivers routine (t = − 7.104; P < .001; d = − 0.834), support of patient (t = − 4.038; P < .001; d = − 0.834), taking responsibility (t = − 2.320; P < .05; d = − 0.599), other relations (t = − 7.636; P < .001; d = − 0.972), patients behaviour (t = − 6.350: P < .001; d = − 0.640) and caregiver strategy (t = − 2.991; P < .05; d = − 0.772) as compared to the caregivers in comparison group. They also reported significantly higher quality of life on various domains of WHOQOL-BREF including physical quality of life (t = 4.62; P < .001; d = 0.793), psychological quality of life (t = 7.23; P < .001; d = 0.867), social relationship quality of life (t = 7.94; P < .001; d = 1.252) and environment quality of life (t = 7.93; P < .001; d = 1.349). Caregivers of patients attending the day care skill training demonstrated lesser burden and better quality of life. The findings underscore the importance of a long-term patient focused day-care skill training for caregivers’ health and wellbeing.
... One of the patient-related factors was resentment from psychological problems, and according to family caregivers, these symptoms impose a lot of pressure on them. A 2014 study by Jagannathan et al. showed that the amount of stress and burden that caregivers of patients with schizophrenia experience depends on the patient's psychopathology and level of psychological and behavioral problems (27). The more severe the symptoms are, the more pressure on the caregivers there will be (28). ...
... Participants in the study stated that taking care of the patient was followed by experience in some problems, pains and physical dysfunction. This issue has also been addressed in previous research in this area (13,15,27,31,32). A 2000 study by Chou et al. argued that caregivers reported general physical complaints such as fatigue and chronic muscle aches, insomnia or lack of sleep, heart problems, digestive problems, and weight changes due to the high pressures from care responsibilities (31). ...
Article
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Background Family caregivers of individuals with chronic psychiatric disorders play an important role in the management of the patient’s conditions, which interferes with other activities of daily living, work, social and leisure activities. Objective This study was conducted in an Iranian context to explore the perception of family caregivers about barriers of leisure in care of individuals with chronic psychiatric disorders. Methods The current qualitative study was conducted on the basis of conventional content analysis. Participants were 15 family caregivers of individuals with chronic psychiatric disorders who were selected by Purposeful sampling method between July 2016 and March 2017 in Tehran, Iran. The data was collected via in-depth semi-structured interviews. The interviews were tape recorded, written and transcribed. Then, data were analyzed by inductive content analysis method. Results Data analysis led to extraction of 3 main categories and 10 sub categories. Obstacles to leisure-time of family caregivers have been placed in three main categories which are patient-related factors (Resentment from psychological problems, Resentment from behavioral problems, Need for continuous monitoring and access), caregiver-related factors (Physical harm, Psychosocial harm, Temporal stress, Accumulation of responsibilities, Concerns), and community-related factors (Feeling of sympathy and rejection, Social stigma). Conclusion Understanding the barriers of leisure in this group of family caregivers has contributed to understanding the family caregivers’ perception in this area and regarding their leisure, it can provide a broader perspective to mental health therapists, rehabilitation managers and policy makers for understanding the needs, addressing the challenges and barriers of this group of family caregivers.
... On the other hand, in the following study, this condition happens because nurse caregivers are busy with the recovery process for inpatients with schizophrenia, and thus, they understand the problem. 22 The use of specific coping strategies may be relevant much later in the treatment. 22 However, a study investigating avoidance shows different results. ...
... 22 The use of specific coping strategies may be relevant much later in the treatment. 22 However, a study investigating avoidance shows different results. The use of avoidance coping strategy shows a positive correlation with the burden on schizophrenic caregivers. ...
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Background: Violent behavior is one of the most common symptoms of people who have schizophrenia. Caring for family members who have schizophrenia can be a stressor for other family members. The stressors can be stressful for the caregiver. Family caregivers require coping strategies to overcome the stressors. This study aims to determine the relationship between stress levels and coping strategies of family caregivers who treat schizophrenic patients with a risk of violent behavior. Design and Methods: The research design engaged cross-sectional with the purposive sampling technique by involving 87 caregiver families who who treat schizophrenic patients. The data was collected by using the Perceived Stress Scale (PSS) and Ways of Coping (WOC) questionnaires. This study was analyzed by employing the Chi-Square test to determine the relationship between stress levels and coping strategies in the caregiver family. Results: This study shows that stress levels are not significantly associated with coping strategies in family caregivers. Conclusion: Good supports from health and social service professionals are required to help family caregivers cope with their stressors well.
... Previous studies have shown that such burden is experienced by family caregivers of patients with mental disorders [26]. The family caregiver burden negatively affects physical and mental health [27,28], social relationships [29,30], and financial life [27,29,31,32] of caregivers. For example, the caregiving burden can cause much marital discord, especially for women whose husbands suffer from schizophrenia [33]. ...
... Previous studies have shown that such burden is experienced by family caregivers of patients with mental disorders [26]. The family caregiver burden negatively affects physical and mental health [27,28], social relationships [29,30], and financial life [27,29,31,32] of caregivers. For example, the caregiving burden can cause much marital discord, especially for women whose husbands suffer from schizophrenia [33]. ...
Article
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Background Mental disorders are destructive and usually require long-term medication, but non-adherence of medication is highly prevalent in patients with mental disorders. Previous studies relating to medication non-adherence were mainly quantitative. Meanwhile, there have been even fewer studies conducted in rural areas in China that focused on patients’ medication non-adherence. This study aims to explore the barriers to medication adherence for rural patients with mental disorders in China from the perspectives of patients, patients’ family members and healthcare providers. Methods A qualitative study was carried out in the rural areas of four towns within Shandong Province in eastern China. The study adheres to COREQ guidelines. Semi-structured in-depth interviews were conducted with 11 patients, 21 family members and 8 primary mental health service providers. Results Thematic analysis generated five major themes: (1) lack of self-insight, (2) inadequate family support, (3) long treatment duration and side effects of drugs, (4) poor economic conditions, and (5) the perceived stigma of illness. Conclusion These findings may be useful for policymakers and planners to improve medication adherence and decrease the recurrence rate of mental disorders in China.
... More severe illness symptomatology and disability in the patient were the patient characteristics associated with higher IEQ score. All these factors; female sex (24)(25)(26)(27)(28)(29), being a first degree relative (6,20,29,30), more severe symptomatology and disability (6,25,28,(30)(31)(32)(33); have all been found to be associated with increased care burden. While the consistency of the findings speaks to the validity of the findings in this setting, it also speaks to the need for improving access to care to reduce symptoms of illness and disability and to the need of identifying interventions that support female caregivers in particular. ...
... More severe illness symptomatology and disability in the patient were the patient characteristics associated with higher IEQ score. All these factors; female sex (24)(25)(26)(27)(28)(29), being a first degree relative (6,20,29,30), more severe symptomatology and disability (6,25,28,(30)(31)(32)(33); have all been found to be associated with increased care burden. While the consistency of the findings speaks to the validity of the findings in this setting, it also speaks to the need for improving access to care to reduce symptoms of illness and disability and to the need of identifying interventions that support female caregivers in particular. ...
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Introduction: Caregivers of people with severe mental illness experience substantial burden from providing care. This burden is likely to be higher in low-and middle-income countries where statutory medical and social services are in low supply. Objective: We conducted a study aiming to evaluate the level of caregiver burden among caregivers of people with severe mental illness. Methods: The study was population-based cross-sectional evaluation carried out in the Sodo district of the Gurage zone in south Ethiopia. Three hundred people with severe mental illness and matched caregivers were included. The involvement evaluation questionnaire, a widely used tool for assessing caregiver burden, was administered. The involvement evaluation questionnaire has four domains (urging, worry, supervision and tension). Results: Caregivers were predominantly women (52.5%), married (67.6%), under 45 years of age (57.5%) and had little or no formal education (60.9%). The overall mean burden score (95% confidence interval (CI)) was 45.3 (43.2, 47.4); highest for "urging" (mean=15.5; 95% CI=14.6, 16.4) and "worrying" domains (mean=13.7; 95% CI=12.9, 14.4). Being female caregiver, first degree relative, experiencing distress and caring for patients with higher levels of symptomatology and disability were significantly associated with higher overall burden score. Conclusions: As anticipated, caregivers in this setting have higher levels of burden of caring compared with care givers in Europe and other settings. Interventions should aim not only at decreasing patient symptoms and improving functionality, but also at decreasing caregiver distress focused on women and first-degree relatives.
... 3 There are very limited numbers of studies available on the subject in the Indian population. Jagannathan, A. et al. 15 have reported the duration of illness and perceived social support to be significant predictors of burden in addition to psychopathology and disability. Kumar, C. N., et al. 16 have concluded that burden experienced by family caregivers of schizophrenia patients depends on the level of disability experienced by the patient, age of the family caregivers and gender of the patient. ...
... In the current study, 22(55%) had the moderate burden, and 18(45%) had a severe burden. The mean score of selfreporting questionnaire 20 of the study population was 8.78 Factors associated with caregiver burden and distress Jagannathan, A., et al. 15 in their study of caregivers of 137 schizophrenia patients found that duration of illness and levels of psychopathology and disability had a significant direct correlation with total burden score; perceived social support had a significant inverse correlation with total burden score. There was a high correlation between psychopathology and disability (p<0.001). ...
... Carer burden may also be an important consideration (Jacobs et al. 2015) and could explain more variation in length of hospital stay beyond just the presence or absence of a carer. Carer burden is typically divided into subjective and objective components; this distinction is important as the incidence and correlates of the two burden types tend to differ (Jagannathan et al. 2014;Jones 1996;Montgomery et al. 1985). Most studies have focused on subjective burden, that is personal appraisal of the caring role including attitudes and emotions (Brouwer et al. 2004;Montgomery et al. 1985;Page et al. 2006). ...
... To our knowledge, no study to date has investigated the impact of objective carer burden alone on length of stay for mental health, using such measures as hours of care per week and standby time or time 'on call' and, in the Australian context, there has only been one investigation of the impact of any form of carer burden on length of stay (Draper & Luscombe 1998). Caring for long hours (over lengthy periods of time) tends to be related to caring for someone who is more unwell, coupled with a greater need for carer respite (Jagannathan et al. 2014;Shi et al. 2018), which as hypothesized by Jacobs et al. (2015), could result in a prolonged length of stay for patients. This investigation is therefore pertinent because if objective carer burden is highly associated with longer hospitalizations, attempts to reduce care recipient hospital days may be feasible, for example by targeting more timely and suitable respite options. ...
Article
Informal carers play a vital role in supporting Australians living with a mental illness, including during the acute phases of illness; however, little is known about their impact on length of hospital stay. We aimed to investigate the impact of having a carer and of carer burden on length of hospital stay for mental health. Two Australian datasets were used. Data from the 2010 National Survey of High Impact Psychosis (n = 1825) were used to investigate the impact of having versus not having a carer on length of hospital stay for mental health. Data from the UQ Carer Survey 2016 (n = 105), a convenience sample of mental health carers, were used to investigate the impact of weekly hours of care (a measure of objective carer burden) on length of stay. Multiple logistic regression and correlation analyses were performed to investigate the association between carer status/burden and length of stay. Having a carer was associated with a significantly longer length of hospital stay; however, this relationship was no longer significant after adjusting for diagnosis, global functioning, depressive symptoms, deliberate self‐harm, mental health outpatient contacts and type of admission. Weekly hours of care did not significantly impact on length of stay. Patients with carers had poorer functioning which may be related to longer stays. Our analysis was not able to look at subgroups of carers with different needs. Future work is required to determine other components of the admission and discharge process where having a carer is influential.
... There were several factors that affect care giver burden, such as from patients, caregivers, especially due to lack of knowledge (Yazici et al., 2016) and stigma from communities (Bonsu, Salifu Yendork, & Teye-Kwadjo, 2020). Caregivers should have the knowledge and competence to provide care for family with chronic mental illness (Jagannathan, Thirthalli, Hamza, Nagendra, & Gangadhar, 2014). Family caregivers who are caring schizophrenia patients had high level of burden compared to caregivers who are caring for family members with chronic illnesses (Hsiao, Lu, & Tsai, 2020). ...
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Introduction: People with schizophrenia need the role of the family as a caregiver. Objectives: The aim of this study was to describe the burden of the family as a caregiver for schizophrenia patients in an outpatient polyclinic setting, Menur Mental Health Hospital Surabaya. Methods: Total participants were 160 family caregivers who carry out routine check-ups for families with schizophrenia. The data was obtained using the Indonesian version of the Zarit Burden Interview (ZBI) questionnaire and Cronbach alpha (α) was 0.931. Descriptive statistics were used to describe and categorize the family caregiver burden. Results: The results showed that the majority of participants had burden score in the category no burden – low burdens: 64 participants (40.0%), the mild-moderate burden category was 84 participants (52.5%), the moderate-severe burden was 11 participants (6.9%), very severe burden category was only 1 participant (0.6%). In addition, the demographic data showed that most of the participants were adult (55%), and the majority of caregivers are female (54.4%), the majority of education was senior high school (51.9%), for and most of the participants were unemployed (45.6%). Conclusion: This study was needed to provide evidence for evolving intervention among family caregivers.
... The physical and mental well-being, social relationships, and caregivers' financial life are impressed by the family caregiver burden 11,12 . It also correlates with psychological morbidity, lower leisure time, workload, and caregiver burnout 13 . Due to patients' behaviour and a negative attitude towards the patient, they often feel frustration, rage, humiliation, anxiety, sadness, and stress 14,15 . ...
Article
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Background: People who are dealing with psychological disorders are not able to take care of themselves; therefore, their family has to take care of them. While dealing with psychological issues is itself difficult for their family members. Schizophrenia and Bipolar disorder are psychological severe disorder that has a considerable influence not only in the patient but also for the entire family. This study aims to determine a relationship between life satisfaction and caregiver burden among caregivers of patients suffering from psychiatric illness. Methodology: We started the research after approval from the board of study and prior consent from the psychiatric hospitals' higher authorities and rehabilitation centers in Karachi. The authorities demonstrated the research objectives, the consent letter, and the questionnaire to be filled by the researcher. Zarit Burden Interview Scale (ZBIS) and Satisfaction with Life Scale (SWLS) (Pavot & Diener) were used. The sample size of this study was 170 psychiatric patients. Psychiatric patients were divided into schizophrenia disorder (n=85) and bipolar disorder (n=85). Results: The result indicates that the caregiver burden is the predictor of satisfaction with life in patients with bipolar disorders. It also shows in results that there was a significant difference among the different levels of the duration of illness on the variable of caregiver burden scale and satisfaction life scale among the caregivers of patients with schizophrenia and bipolar disorders. Further, findings indicate significant differences between males' and females' caregivers of psychiatric patients on the variable of caregiver burden and satisfaction with life scale. Conclusion: We concluded that caregiver burden significantly affects the mental health of the caregivers of patients with psychiatric disorders. Also, caregivers of people who are mentally ill patients suffer a lot of burdens. Therefore, interventions that can assist them, such as providing them with a support system and counselling services, must be created.
... 10 Jagannathan et al. opined that, duration of illness and levels of psychopathology and disability had direct correlation with total burden score and perceived social support had significant inverse correlation with total burden score. 11 A study conducted by Chakrabarthi et al. administered family burden interview schedule to the relatives of 78 patients with affective disorder (BPAD, Recurrent MDD) and 60 patients with schizophrenia and found that both the groups reported financial burden, disruption of family routine, family leisure and family interaction as burdensome. ...
Article
BACKGROUND Mental health is an important aspect of health, and it should be cherished, promoted, and conserved, to the maximum. World-wide, around 450 million people suffering from mental illness and contributing to important causes for years lived with disability. Caring is a fundamental issue in the treatment of a patient with mental illness. Majority of patients stay with their families and they have been the mainstay of care giving for patients with mental illness. Taking care of chronic mentally ill patients puts stress and burden on the caregivers. Caregivers use different methods of coping. This study was conducted to assess burden among caregivers of chronic mentally ill patients. METHODS This is a hospital based cross-sectional study. A consecutive sample of 150 caregivers of both inpatients and outpatients who satisfy the inclusion criteria, attending psychiatry department were recruited in the study. Caregivers were assessed with socio-demographic proforma. The burden assessment schedule (BAS) developed by SCARF measures the burden experienced by caregivers of chronic mentally ill patients. Statistical analysis was done using statistical package for social sciences (SPSS). Categorical and quantitative variables were expressed as frequency (percentage) and mean ± SD respectively. Chi-square test was used to association between categorical variables. RESULTS Of the 150 participants, 16 % experienced mild burden, 57.3 % had moderate levels of burden and 26.7 % had severe burden levels. CONCLUSIONS This study concluded that caregivers of the mentally ill individuals do undergo a lot of burden or strain. Highest areas of burden were seen in the areas of physical and mental health, external support, and spouse related. The caregivers are in need of support and understanding. Clinicians dealing with the caregivers of patients with chronic mental illness must systematically assess the coping mechanisms of caregivers and encourage the use of adaptive and problem-focused coping mechanism to improve the caregiving and patient related outcome. Hence, there is a need to develop strategies that can help them such as providing them with a support structure as well as counseling services. KEYWORDS Caregiver, Burden, Mental Illness, Coping
... Importantly, caregivers appear to have different concerns from people with mental illness. For example, they bear signi cant physical, mental, and economic burdens as a result of caring for those with mental illness [2]. In short, we need to identify proper research outcomes for caregivers themselves. ...
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Objective: This study investigated outcomes in community mental health research that were important to caregivers of people with schizophrenia. Using an online survey conducted from August 1–31, 2020, data were collected from caregivers belonging to the LINE Schizophrenia Family Association. Caregivers identified outcomes important in community mental health research. Two researchers categorized caregivers’ statements into research outcomes. Results: A total of 132 caregivers completed the online self-reported questionnaire, and 296 caregiver statements were identified. Qualitative analysis identified 17 outcome categories. The caregivers tended to value having more free time, maintaining an appropriate relationship with people with schizophrenia, and being able to cope with their symptoms. This exploratory study newly demonstrates the outcomes that caregivers of people with schizophrenia consider important in community mental health research. The findings may be useful in selecting outcomes for future studies of caregivers.
... Impaired motor function and the inability to perform ADLs independently are likely to be associated [19], given that LS progression results in limited independence in performing ADLs. In the study by Jagannathan et al. the patients with schizophrenia who were unable to perform ADLs independently became significant burdens to their family members and demonstrated poor community integration [20]. ADL independence is paramount to transitioning back into the community, and preventing LS risk progression is critical. ...
Article
Background Patients in psychiatric care wards face serious problems in terms of declining physical function due to aging and long-term hospitalization. This study aimed to determine the current status of locomotive syndrome (LS) in long-term inpatients in psychiatric care wards and to clarify the factors associated with LS risk severity. Methods The study included 84 patients admitted to psychiatric care wards who underwent the LS stage test. We investigated the participants’ age, length of stay, antipsychotic drug use, body mass index, and activities of daily living were assessed and analyzed the correlations between the LS stage test and each assessment item. Results The participants' mean age was 60.0 ± 13.6 years, with those aged ≥60 years comprising nearly 60% of the sample. The participants’ mean length of stay was 10.5 ± 12.0 years, and over half of the patients stayed >5 years: 17.9% stayed between 5 and 10 years, while 36.9% stayed ≥10 years. Nearly 90% of participants stayed for >1 year. The LS stage test showed that 60.7% of the participants were stage 3, 21.4% were stage 2, 14.3% were stage 1, and 3.6% had no risk. The results of the LS stage indicated significant correlations with age, length of stay, and the Barthel Index scores. Conclusions Patients who stay in a psychiatric care unit for a long period experience declining physical function, which is associated with aging and long-term hospitalization and might affect their activities of daily living.
... In the last few years, an increasing number of studies have analysed the characteristics of caregivers and assisted patients in order to discover the cause of the perceived "caregiver burden", with mixed results. Although some studies are not able to highlight any correlation between caregiver burden and patient characteristics [32][33][34], other research shows that some variables of patients affected by schizophrenia could worsen caregiver burden: male gender, young age, impaired functional skills, severe mental illness for a long time, multiple psychiatric hospitalizations [35][36][37]. Regarding condition characteristics, suicidal ideation, behavioural disorders and/or negative symptoms have the highest impact on the increase of perceived burden [38]. ...
Article
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Background Caregivers of patients load different kinds of burdens, including emotional distress. Aims of this study were to evaluate both burden and empathy of caregivers who assist patients with schizophrenia spectrum disorders. Methods We selected a sample of 60 caregivers (34 women and 26 men), who assisted patients with schizophrenia spectrum disorders treated in our local Community Mental Health Center for a 1-year minimum period. We administered two scales to our sample, Zarit Burden Interview (ZBI) and Balanced Emotional Empathy Scale (BEES), and collected data of caregivers and their assisted patients in a 3-month period. Data were statistically analyzed. Results We reported a mean ZBI score of 49.68 (±15.03 SD) and a mean BEES score of 14.35 (±9.05 SD), indicating the perception of moderate-severe burden and low level of empathy, respectively. The analysis of internal consistency confirmed the good reliability of both ZBI (Cronbach’s alpha = 0.90) and BEES (Cronbach’s alpha = 0.77). The correlation between the two scales was not statistically significant at Spearman test. At our multiple linear regression, many variables of both caregiver and patient showed a significant correlation with the ZBI score. In particular, not living with the assisted patient and female gender of caregiver potentially decreased the burden, whereas clinical severity of assisted patient and two caregiver conditions, middle school education and spouse relationship with patient, could worsen the burden. We highlighted two positive statistically significant correlations between the total score of BEES and caregiver characteristics: being spouse and not living with assisted patient. Conclusions Our study highlights that the caregiver burden of patients with severe psychiatric disorders is high and is associated with low emotional empathy experienced by caregivers, probably due to a defensive psychological mechanism. The conditions of spouse and cohabitation can concomitantly increase both empathy and burden in caregivers.
... Yoga is considered more as an exercise or a practice of lifestyle management rather than a therapy, which makes it more acceptable among people, especially among those, who have stigma regarding use of psychotherapy. Yoga does not seem to have any side-effects as in the case of psychiatric medications (Jagannathan, Thirthalli, Nagendra, & Gangadhar, 2014). Autosuggestion: Sari et al. (2017) did their study on role of autosuggestion in geriatric patients and how this variable affected their quality of life. ...
Conference Paper
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Corona-virus pandemic has been there for more than nine months in all over the world. This pandemic lock down forced all of us to think alternative ways to live and work. Similarly mental health professionals are also looking for alternatives ways to offer their services. Present paper is a theoretical attempt to propose a supporting tool/model (SYAM: Social Support, Yam of eightfold path of Yoga given by Maharsi Patnajali, Auto Suggestion and Meditation of eightfold path of Yoga given by Maharsi Patnajali) for tele-counselling during and after pandemic. Therefore, studies related to the proposed model/tool have been reviewed. And it is found that the proposed model of the first aid or crisis management of mental health can be one of the significant tools to assist not only tele-counselling but also to manage the mental health crisis with just a little support from an expert. The present model (SYAM) is just based on author observation and supporting studies and it is recommended to test this model with empirical finding in future.
... In the last few years, an increasing number of studies have analysed the characteristics of caregivers, assisted patients in order to discover the cause of the perceived "caregiver burden", with mixed results. Although some studies are not able to highlight any correlation between caregiver burden and patient characteristics [25,26,27], some research shows that some variables of patients affected by schizophrenia could worsen caregiver burden: male gender, young age, impaired functional skills, severe mental illness for a long time, multiple psychiatric hospitalizations [28,29,30]. Regarding disorder characteristics, suicidal ideation, behavioural disorders and/or negative symptoms have the highest impact on the increase of perceived burden [31]. ...
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Background The caregiver of patients loads different kind of burdens, including emotional distress. Aims of this study were to evaluate the burden and empathy of caregivers of patients with schizophrenic spectrum disorders and to evaluate if these dimensions are correlate between them and/or with selected variables of caregivers and assisted patients. Methods We selected a sample of 60 caregivers (34 women and 26 men), who assisted patients with schizophrenia spectrum disorders treated in our local Community Mental Health Center for a 1-year minimum period. We administered to our sample two scales, Zarit Burden Interview (ZBI) and Balanced Emotional Empathy Scale (BEES) and collected data of caregivers and their assisted patients in a 3-month period. Results We reported a mean ZBI score of 49.68 (± 15.03 SD) and a mean BEES score of 14.35 (± 9.05 SD), indicating the perception of moderate-severe burden and a low level of empathy, respectively. The analysis of internal consistency confirmed the good reliability of both ZBI (Cronbach's alpha = 0.90) and BEES (Cronbach's alpha = 0.77). The correlation between the two scales was not statistically significantly at Spearman test. Only a few variables, the living environment ("do not live with the patient") indirectly, and the Clinical Global Impression-Severity (CGI-S) score of assisted patients, in a direct way, were statistically significantly correlated with ZBI score. We highlighted only a positive statistically significant correlation between the fifth dimension score of BEES ("Tendency to avoid emotional involvement with fragile people") and CGI-S and GAF (Global Assessment of Functioning) scores of assisted patients. Conclusions Our study highlights that the burden of caregivers of patients with severe psychiatric disorders is similarly high to that of organic or neurologic disorders and is associated with low emotional empathy experienced by caregivers, probably due to a defensive psychological mechanism.
... Jenkins and colleagues (2009) also reported that individuals who experienced a "strain" associated with caregiving responsibilities had significantly higher rates of mortality and poor health. This is similar to other recent studies that have demonstrated how caregiving burden can have a negative impact on individual's physical and mental health, as well as social and financial burden (Jagannathan et al., 2014;Kızılırmak & Küçük, 2016). ...
Article
Abstract More people with HIV live in South Africa than anywhere else in the world. As people with HIV increasingly confront comorbid conditions, such as Type 2 diabetes, the need for integrated chronic care continues to grow. However, chronic care for patients with multimorbidities is limited in many public hospitals in South Africa. This ethnographic study describes patients’ experiences seeking care for comorbid HIV and diabetes at a public tertiary hospital in Soweto, South Africa, and self-management at home. Findings illustrate how fragmented care, multiple clinic appointments, conflicting information, and poor patient–provider communication impeded patients’ access to care for their multimorbidities. Socio-economic factors such as poverty, costly transport to the hospital, and food insecurity impeded management of multimorbidities. Integrated care for patients with multimorbidities in Soweto is imperative and must recognize the critical role social and economic conditions play in shaping the experiences of living with HIV, diabetes, and their overlap. Keywords Diabetes; HIV; integrated care; ethnographic study; qualitative; South Africa.
... Many researchers have investigated the consequences and problems that are faced by the caregivers of patients with schizophrenia. [6][7][8] But, there is a paucity of data regarding the problems faced by the caregivers of patients with somatoform disorder. A prior Indian study had found that patients with somatization disorder suffer substantial disability and caregiver burden, comparable with severe mental illness. ...
Article
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Background Very few Indian studies have explored disability among patients with somatoform disorder and the burden experienced by their caregivers. We aimed to assess the levels of disability among patients with somatoform disorder and the levels of burden among their caregivers and compare these parameters against patients with schizophrenia. Methods Participants included adults with a diagnosis of somatoform disorders (F45.0–F 45.9) ( n = 28) or schizophrenia (F20.0–F20.9) ( n = 28) diagnosed as per the International Classification of Diseases, Tenth Revision ( ICD-10), clinical descriptions, and diagnostic guidelines, as well as their caregivers. The WHO Disability Assessment Schedule 2.0 and Family Burden Interview Schedule were used to assess patient disability and caregiver burden, respectively. Independent Student’s t-test or chi-square test was used to compare relevant sociodemographic and clinical parameters. Results Out of 56 patients, the mean (±SD) age of the sample was 38.6 (±10.5) years. Females constituted a slender majority of the sample ( n = 29, 51.8%). The mean disability score of patients with somatoform disorders was slightly higher (83.6 ±20.9) than that of patients with schizophrenia (82.3 ±16.7). Similarly, the mean burden score of caregivers of patients with somatoform disorders was nominally higher (18.96 ±9.9) than that of caregivers of patients with schizophrenia (15.7 ±9.7). Neither of these differences approached statistical significance (P > 0.05). Conclusion Patients with somatoform disorders experience considerable levels of disability, and their caregivers go through various levels of burden in their daily life that is comparable to schizophrenia.
... Carers experienced high levels of distress and difficulty. Our finding support a qualitative study conducted in India which identified 'managing illness behavior' was one of the high priority need among carers of schizophrenia [14] and, higher caregiver burden was related to psychopathology [26]. ...
... However, another study of parent couples of a person with SZ reported that men and women were equally vulnerable to caregiving stressors (Ghosh and Greenberg 2012). Factors that may lead to perceived increased burden of caregiving are-among others-duration of illness, perceived social support, type and degree of psychopathology and disability (Jagannathan et al. 2014). ...
Chapter
Schizophrenia is a chronic and debilitating major mental disorder which causes significant burden worldwide. Gender may significantly influence its biological features—onset, clinical symptoms, course and outcome. Gender also influences its social consequences: degree of disability, quality of life, stigma, discrimination and social outcomes such as marriage, parenting and caregiving. Gender-based disparities result in the gender gap for availability and access to treatment services and to disability benefits. We review biological and social factors which determine the outcome of schizophrenia. Social workers are well positioned to examine the critical role of gender at the intersection of the biological, psychological and social influences which determine the consequences of this illness on patients and their families. They can facilitate the formulation of gender- and culture-sensitive interventions to improve treatment outcome in both male and female patients of schizophrenia.
... In this regard, one study showed that caregivers endured a lot of stress and it affected all activities of their daily life. 37 In Iran, these caregivers confront with more severe financial problems. Thus, it seems that the development of mental health disorders such as BPD through imposing heavy costs can reduce the comfort of life of the caregivers and limit their daily living activities. ...
Article
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Background: Having a patient with borderline personality disorder (BPD) in the family is a complicated and stressful experience. The caregivers' experiences and the problems they have in care of patient with BPD have remained unknown. The aim of this research was to explore the experiences of the caregivers while living with BPD patients in Iran. Methods: This interpretive phenomenological research was performed on 10 caregivers of patients with BPD at Ibn-sina Hospital in Mashhad, Iran, in 2019. Purposeful sampling was used for sampling. Data were collected through semi-structured interviews and saturated after 16 interviews. The analysis of data was concurrently carried out using the method proposed by Diekelman (1989). The MAXQDA software (Ver.10) was used for data organization. Results: The participants in this study were aged 25 to 55 years. After data analysis, three themes ("life in hell", "chain to the feet", and "black shadow of stigma") and six sub-themes ("disrupted from the life", "self-discrepancy", "care bottlenecks", "in the fence of restriction", "society dagger" and "resort to secrecy") emerged. Conclusion: The results of this study showed that the caregivers of patients with BPD during the period of care were faced with a variety of problems. It is suggested that health policy-makers should pay more attention to the problems related to the mental health of caregivers.
... As the duration of illness in patients increased the spousal burden also increased with a positive correlation (r = 0.8), which was statistically significant with the p value -0.001* as shown in Section: Psychiatry of family caregiver burden in schizophrenia: Study from an in-patient tertiary care hospital in India, found duration of illness and levels of psychopathology and disability had significant direct correlation with total burden score. 19 In the same manner Kar et al also reported that duration of illness had statistically significant impact on care giving burden. 20 In the current study as the severity of illness increased the mean burden value also increased, showed a positive correlation value of r = 0.85, which was found to be statically significant with a p value = 0.001 as shown in table 6. ...
... Those with serious mental health problems are defined as a population likely to need long-term care and assistance (Alexander et al., 2016). The scientific literature is rich in studies (Jagannathan, Thirthalli, Hamza, Nagendra, & Gangadhar, 2014;Krishnan & Sood, 2017;Navarro-Pérez & Carbonell, 2018) that analyze the impact that this care has on families and the way this is associated with a lower quality of life (Narasipuram & Kasimahanti, 2012). Despite the fact that it is becoming more and more widely recognized that it is not only associated with negative consequences but also with subjective gains and satisfaction (Kulhara, Kate, Grover, & Nehra, 2012), care is a great devourer of time and opportunity in many areas of life. ...
Article
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The aim of this article is to investigate the importance of family care in mental health and identify the shortcomings of the Spanish model of health care for the mentally ill. The empirical process comprised three qualitative procedures involving 37 experts from different regions of Spain. In order to guarantee the rigor of the data, a social worker discussion group was set up to create an interview script. Interviews were then carried out with 22 professionals who take care of people with mental illness in various public facilities throughout the country. A second focal group met three times to validate the categorizations analyzed in the interviews. The results of the empirical process indicate a need to remodel the mental health care system, which can be described with reference to five critical characteristics: 1) a lack of financial and human resources for mental health, 2) a lack of effective coordination among all the institutions and authorities involved, 3) a lack of quality resources aimed at rehabilitation and social reintegration as alternatives to institutionalization, 4) a lack of integrated care, and 5) a lack of a common healthcare framework for all professional workers in all the regions. A remodeling of the system is necessary to enable the rehabilitation, recovery, empowerment and development of people with SMD and thus ease the burden and improve the quality of life of family caregivers.
... There was strong evidence showing that family psychosocial interventions were effective in improving the clinical and social course of schizophrenia [9][10][11]. On the other hand, patients with schizophrenia who cannot perform ADL independently become a significant burden to their family members and show poor integration into the community [12]. A large body of research has demonstrated that caregivers may have substantial disruption and distress in coping with the disruptive behavior and thinking of their family member, including psychological distress, financial hardships, and impediment to employment [13,14]. ...
Article
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This study investigated the relationship between the activities of daily living and the length of hospitalization to determine the optimal length of hospitalization for patients with schizophrenia. We collected information from all schizophrenia patients discharged in Peking University Huilongguan Clinical Medical School from January 1, 2015 to December 31, 2015. A total of 1967 patients were enrolled in this study. The Chinese version of the modified Barthel index (MBI-C) was used to assess patients’ actual performance on activities of daily living. We used the paired samples t-test to compare MBI-C scores at admission and discharge and performed correlation analysis to find the trend of MBI-C change with length of hospitalization. The average length of hospitalization was 73.3 ± 42.2 days. There were significant differences between the MBI-C scores at the time of discharge from hospital compared with those at the time of admission to the hospital (93.4 ± 11.2 vs. 88.7 ± 11.8; P < 0.001). Taking the length of hospitalization as the grouping boundary value, the correlation analysis of the subgroup found that below a minimum of 20 days, the improvement in the MBI-C scores increased with the increase of length of hospitalization, and above a maximum of 50 days, the improvement in the MBI-C scores decreased with the increase of length of hospitalization. The optimal length of hospitalization for patients with schizophrenia may lie between 20 and 50 days, with regard to the recovery of daily living function.
... e442 The analysis of caregiver burden produced an average score of 45.79, and three-quarters of the population surveyed registered intense levels of burden on the ZBI, revealing that the caregivers of people with SMI felt a significant burden similar to that found in other studies in the literature (17,15), which warn that this population could be at risk of being overwhelmed. In this study the caregiver burden is associated with sex and age, with the highest levels being found among male and younger caregivers, unlike in other recent investigations (18,19) that indicate that looking after women and older patients are sources of stress and factors predictive of burden. Following Blanco et al. (20), this could be because inexperience and the opportunity costs of care may cause a feeling of burden in younger male caregivers. ...
Article
Background: The aim of the present study is to analyse the variables associated with the family care of people diagnosed with serious mental illness. Material and methods: A cross-sectional study was carried out involving caregivers of people with serious mental illness (SMI) who were known to the mental health services in Valencia (España) and associations for those with SMI. The sample comprised 417 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview. Bivariate analyses (t-test, analysis of variance and Pearson correlation) were performed, as was a multiple linear regression model. Values of p < .05 were considered significant. The study was carried out in accordance with the recommendations of the ethics committees of the participating institutions. Results: The statistical analyses showed significant associations between the sociodemographic and clinical variables of the caregivers and patients and the burden felt by caregivers of people with SMI. The importance of both formal and informal social support stands out as a protective factor against the consequences of the illness's impact on the main caregiver. Conclusions: The role of spaces of mutual support is crucial. The results suggest that family psychoeducational programmes should be created, applied and evaluated in all mental healthcare services so as to reinforce training in mental health matters and provide support and assessment to caregivers in order to ease their burden.
... These women who care are themselves prone to Psychological problems like anxiety and depression 6 times more than those who have no such responsibility [1] . The factors that influence the caregiver burden is affected by gender of the patient, severity of the illness, caregiver age, cultural factors, stigma, duration of the disease [3,4] . ...
... 1,2 An accumulating number of studies have also endeavored to explore correlates of family burden. While there is more agreement that family burden is positively associated with the psychopathology and disability of schizophrenia and can be alleviated by strengthening social psychological factors such as social support, family function, and positive coping, 1,3,4 conflicting evidence exists on the correlation between family burden and sociodemographic factors. For instance, the literature differs on whether caring for male patients or female patients is more burdensome. ...
Article
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Background: The present study aimed to investigate differences in family burden and caregiver distress in a population of caregivers for schizophrenia, by separating patient gender and caregiver gender. Methods: A sample of 327 primary family caregivers was recruited from a Chinese rural community through a one-stage cluster-sampling method. A cross-sectional design was employed, using validated measures to assess both family burden and primary caregivers' depression and anxiety. Results: Significant differences by gender were detected in family burden and caregiver distress. Family burden was significantly higher for male patients on the domains of effect on physical and mental health of others, and significantly higher for female caregivers on the domains of financial burden and effect on physical and mental health of others. Caregivers of male patients were more likely to suffer from anxiety than caregivers of female patients (52.7% vs 38.1%, P=0.012); female caregivers were more likely to suffer from depression (51.2% vs 38.6%, P = 0.031) and anxiety (51.6% vs 38.1%, P=0.020) than male caregivers. Conclusion: The results reinforced the expected differences in caregiving experiences of a schizophrenia population by gender, which has implications for the future design of gender-specific interventions to alleviate family burden and caregiver distress.
... The 2 onset of mental illness in the family can be stressful or 3,4 crisis for the family members. They experience high levels of burden in caring a person with severe mental 5,6 illness. Family experiencing high but perceived stigma, which in turn can affect their relationship with the affected member, help-seeking behaviour and well being of the family. ...
... Studies in India and Chile conducted on caregivers of schizophrenic outpatients at the hospital said that the duration of illness, the degree of psychopathology, level of disability, the frequency of recurrence, positive symptoms and lack of social support were predictors of the onset of the burden of family care 10,11 . In this study duration of pain and frequency of recurrence did not affect the burden of family care but long caring was associated with family care burden. ...
Article
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Background: Schizophrenia is a chronic severe mental disorder which causes a substantial burden of care for family caregivers.Objective: This study aimed to identify the effect of a brief interactive psycho-education intervention on caregivers towards family care burden for schizophrenic patients.Method: This study was a quasi-experimental design with one control group. Data were obtained from a random sample of patients who came to Puskesmas Kasihan II (Community and Primary Health Care Center). The participants in this research were 68 caregivers, who were divided into treatment and control groups. Both groups were administered a pre and post-test with the Burden Assessment Schedule questionnaire early in the first week and in the end or fourth week. The treatment group received a brief interactive psycho-education of schizophrenic patient care over one week for 4 sessions, while the control group received the prescribed essential medicines as usual.Results: This study showed that the average scores of the pre-test for the two groups were not significantly different (p value 0.77), while the averages of the post-tests were significantly different (p value 0.001).Conclusion: It was concluded that a brief interactive psycho-education for caregivers of schizophrenic patients was effective to decrease family care burden.
... For schizophrenia, a number of studies have reported on caregiver burden in countries outside Japan, including European countries (Gupta et al., 2015a;Magliano et al., 2005a;Papastavrou et al., 2012;Zendjidjian et al., 2012), middle income countries, such as Chile (Gutierrez Maldonado et al., 2005) or developing countries like India (Jagannathan et al., 2014) and Nigeria (Lasebikan & Ayinde, 2013). ...
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Background: When a family member is diagnosed with schizophrenia, it causes stress to the caregiver that can eventually result in missed work days and lower work performance. Aim: This study aims at revealing productivity costs for caregivers of schizophrenia patients in Japan. Method: A cross-sectional survey of caregivers was conducted and resulted in 171 respondents. The assessment of work productivity included calculating the costs of absenteeism, presenteeism and total productivity costs. This was accomplished using the “Work Productivity and Activity Impairment Questionnaire” (WPAI). Results: A relative majority of caregivers in the sample provided care for their spouse (47%), 18% cared for their brother or sister and 16% provided care for their child. Per capita productivity costs totaled JPY 2.42 million, with JPY 2.36 million (97%) of that amount being due to presenteeism. Conclusions: The burden on caregivers is substantial enough to warrant structured support programs aimed at maintaining careers’ physical and mental health, helping them provide more effective care to schizophrenia patients and eventually increase productivity at work.
Article
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Background Little is known about how sociodemographic and clinical factors affect the caregiving burden of persons with schizophrenia (PwSs) with transition in primary caregivers. Aims This study aimed to examine the predictive effects of sociodemographic and clinical factors on the caregiving burden of PwSs with and without caregiver transition from 1994 to 2015 in rural China. Method Using panel data, 206 dyads of PwSs and their primary caregivers were investigated in both 1994 and 2015. The generalised linear model approach was used to examine the predictive effects of sociodemographic factors, severity of symptoms and changes in social functioning on the caregiving burden with and without caregiver transition. Results The percentages of families with and without caregiver transition were 38.8% and 61.2%, respectively. Among families without caregiver transition, a heavier burden was significantly related to a larger family size and more severe symptoms in PwSs. Deteriorated functioning of ‘social activities outside the household’ and improved functioning of ‘activity in the household’ were protective factors against a heavy caregiving burden. Among families with caregiver transition, younger age, improved marital functioning, deteriorated self-care functioning, and better functioning of ‘social interest or concern’ were significant risk factors for caregiving burden. Conclusions The effects of sociodemographic and clinical correlates on the caregiving burden were different among families with and without caregiver transition. It is crucial to explore the caregiver arrangement of PwSs and the risk factors for burden over time, which will facilitate culture-specific family interventions, community-based mental health services and recovery.
Article
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This study aimed to conduct a quantitative synthesis of the clinical correlates of caregiver burden in schizophrenia studies published in the last two decades. Derived from eight electronic databases, this meta-analytic review revisits 34 English articles published from 2000 to 2020 relevant to family caregiver burden in the schizophrenia field. The Newcastle–Ottawa Scale (NOS) was used to assess study quality. The pooled effect sizes of the selected studies ranged from −0.390 to 0.751. The results indicated a significant association between a heavier burden and disease-related risk factors, including more severe symptoms, greater general psychopathology, greater severity of functional impairment, and longer duration of illness. The results show moderating effects of study characteristics (i.e., study quality, participants, and location) on the correlations between these disease-related risk factors and caregiver burden. This review highlights the roles of study characteristics in affecting the inconsistent results for the effects of disease-related risk factors on caregiver burden in families of patients with schizophrenia. Psychosocial interventions are essential for family caregivers of persons with schizophrenia. Future studies incorporating random samples from both high-income and low-to-middle-income countries will be crucial to understand the effects of cultural contexts on caregiver burden in families of persons with schizophrenia.
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The main aim of this study is to investigate the difference of transition from oral to long-acting antipsychotic treatments on caregiver burden of patients with schizophrenia. Other factors that may be related to the burden were also discussed. Caregivers (n:138) of patients diagnosed with schizophrenia for at least one year and who received oral paliperidone or aripiprazole were included in the study. The Zarit Caregiver Burden Scale (ZCBS) and The Clinical Global Impression-Disease Severity (CGI-S) were administered at baseline and 1 year after switching to long-acting injectables. Demographic characteristics of caregivers and patients were evaluated to determine other factors associated with the burden. Significant decreases were found in the ZCBS and CGI-S scores after transitioning to long-acting injectable antipsychotics. When the groups using paliperidone and aripiprazole were compared; the decrease in ZCBS scores was not significant, the decrease in CGI-S scores was significant.Caregiver burden was positively correlated with patient's age, CGI-S score, time spent in the same house, duration of illness, and the number of hospitalizations. A significant negative correlation was found among the caregiver’s age, educational level and income. In conclusion, in the present study the importance of switching to long-acting injectable antipsychotics, which is a modifiable factor, to reduce caregiver burden was emphasized.
Article
Introduction: Psychiatric illnesses such as bipolar affective disorder, major depressive disorder, schizophrenia, and dementia can cause significant burden to patient as well as family members. About 14% of the global burden of disease is attributed to neuropsychiatric disorders. Half of the patients with psychiatric illness reported disability in all three domains of work, social, and family life. Aims: (1) To study if caring for patients with major psychiatric illness will lead to significant caregiver's burden. (2) To find the association between caregiver's burden and psychiatric morbidity among the caregivers. Materials and Methods: It is a cross-sectional study conducted at a tertiary care teaching hospital after obtaining institutional ethical clearance. One hundred caregivers of outpatients diagnosed with major psychiatric illness including schizophrenia, bipolar affective disorder, dementia, and major depressive disorder for a period not
Article
This study examines the 21-year longitudinal impacts and predictive effects of family caregiver transition and the presence of family caregiving on the clinical status of persons with schizophrenia (PwSs) in a rural area of China. Using panel data derived from the Chengdu Mental Health Project (CMHP), 250 dyads of PwSs and their family caregivers were investigated in 1994 and 2015. The Positive and Negative Syndrome Scale (PANSS) and the Global Assessment of Functioning (GAF) were utilized. The generalized linear model (GLM) approach was used. The results of this study showed that more severe symptoms in PwSs were found to be significantly predicted by older age and nonmarried status at baseline. Compared with “spousal caregiving in two waves,” the PANSS score was significantly higher in the “transition into sibling caregiving” group. A higher degree of psychosocial functioning was found to be significantly predicted by marital status, shorter duration of illness, and better mental status. Compared with “spousal caregiving in two waves,” the GAF score was significantly lower in the “transition into parental caregiving” group. The presence of family caregiving was not a significant predictor of the severity of symptoms or psychosocial functioning in the PwSs. In conclusion, this study shows the 21-year predictive effects of family caregiver transition on the mental status of PwSs but not the presence of family caregiving. Psychosocial interventions and specific guidance should be provided to family caregivers to enhance their quality of caregiving and improve the prognosis of PwSs during long periods of home care. Resumen es En este estudio se analizan los efectos longitudinales a 21 años y los efectos pronósticos de la transición de los cuidadores familiares y la presencia de cuidado familiar en el estado clínico de las personas con esquizofrenia en un área rural de China. Utilizando datos de panel extraídos del Proyecto de salud mental de Chengdu (Chengdu Mental Health Project, CMHP), se investigaron 250 díadas de personas con esquizofrenia y sus cuidadores familiares en 1994 y 2015. Se utilizó la Escala de síndrome positivo y negativo (Positive and Negative Syndrome Scale, PANSS) y la Evaluación global del funcionamiento (Global Assessment of Functioning, GAF). También se utilizó el método de modelo lineal generalizado. Los resultados de este estudio demostraron que los síntomas más intensos en las personas con esquizofrenia fueron pronosticados principalmente por la edad avanzada y el estado de soltería en el momento basal. En comparación con el grupo de “cuidado de los cónyuges en dos intervalos”, el puntaje de la PANSS fue considerablemente más alto en el grupo de “transición al cuidado de los hermanos”. Se descubrió que principalmente el estado civil, la duración más corta de la enfermedad y un mejor estado mental pronosticaron un grado más alto de funcionamiento psicosocial. En comparación con el grupo de “cuidado de los cónyuges en dos intervalos”, el puntaje de la GAF fue considerablemente más bajo en el grupo de “transición al cuidado de los padres”. La presencia de cuidado familiar no fue un factor pronóstico importante de la intensidad de los síntomas ni del funcionamiento psicosocial en las personas con esquizofrenia. En resumen, en este estudio se muestran los efectos pronósticos a 21 años de la transición de los cuidadores familiares en el estado mental de las personas con esquizofrenia, pero no la presencia de cuidado familiar. Deben ofrecerse intervenciones psicosociales y orientación específica a los cuidadores familiares para mejorar su calidad de cuidado y mejorar el pronóstico de las personas con esquizofrenia durante los periodos prolongados de cuidado en el hogar. 摘要 本研究考察了对中国农村地区精神分裂症患者的长达21年的照顾时间里,家庭照顾者的变化和家庭照顾的存在对患者临床状况的长期性影响和预测作用。数据主要来自成都心理健康项目(CMHP)的长期随访数据,分别于1994年和2015年对250对精神分裂症患者及其家庭照顾者进行了调查。本研究采用了阳性和阴性综合征量表(PANSS)和整体功能评估(GAF),采用了广义线性模型(GLM)分析的方法。本研究结果表明,年龄越大和非婚状态对精神分裂症患者更严重的症状有显著的预测作用。与 "配偶照顾 "相比,"过渡到兄弟姐妹照顾 "组的PANSS得分明显更高。研究发现,婚姻状况、较短的病程和较好的精神状态能够较多地预测较高程度的社会心理功能。与 "配偶照顾 "相比,"过渡到父母照顾 "组的GAF得分明显较低。家庭照护的存在并不是预测精神分裂症患者症状严重程度或社会心理功能的一个重要因素。综上所述,本研究显示,21年的家庭照顾者的变化对精神分裂症患者的精神状态有预测作用,但对是否存在家庭照顾则没有影响。非常有必要为家庭照顾者提供社会心理干预和具体指导,以提高他们的家庭照顾质量,改善精神分裂症患者在长期家庭照顾中的预后。
Article
Background Improving patients’ perception of social support is significant not only for their re-adaptation to life but also for alleviating caregivers’ burden. Aim This study aims to examine an integrated model regarding social support, psychotic symptoms and caregiver burden. Methods Persons with schizophrenia ( N 1 = 300) and their family caregivers ( N 2 = 300) in Xinjin County, Chengdu, China, completed the survey to report their demographics, patients’ perception of social support (Duke Social Support Index), psychotic symptoms (Positive and Negative Syndrome Scale) and caregiver burden (Burden Scale for Family Caregivers, Short Version). Structural equation modelling was utilised to test the proposed model. Results The degree of caregiver burden differed significantly within subgroups of patients’ gender and education, as well as caregivers’ gender, education and employment. Caregiver burden was negatively related to patients’ age and household income. Social interaction partially mediated the relationship between instrumental and subjective social support (total effect = 0.451, p < .01). Subjective social support fully mediated the impact of social interaction on psychotic symptoms (total effect = −0.099, p < .05). In the final model, instrumental social support was positively associated with social interaction ( p < .001) and increased subjective social support ( p < .05). Increased subjective social support showed correlation with a lower degree of psychotic symptoms ( p < .01), which was related to a lower level of caregiver burden ( p < .001). Conclusion This study shows the associations of patients’ social support with psychotic symptoms and caregiver burden. Culture-specific psychosocial interventions should be provided for both patients and caregivers to enrich external support and reduce psychotic symptoms and caregivers’ burden within the health care environment.
Book
Despite years of research, debate and changes in mental health policy, there is still a lack of consensus as to what recovery from psychosis actually means, how it should be measured and how it may ultimately be achieved. In Recovering from a First Episode of Psychosis: An Integrated Approach to Early Intervention, it is argued that recovery from a first episode of psychosis (FEP) is comprised of three core elements: symptomatic, social and personal. Moreover, all three types of recovery need to be the target of early intervention for psychosis programmes (EIP) which provide evidence-based, integrated, bio-psychosocial interventions delivered in the context of a value base offering hope, empowerment and a youth-focused approach. Over the 12 chapters in the book, the authors, all experienced clinicians and researchers from multi-professional backgrounds, demonstrate that long-term recovery needs to replace short term remission as the key target of early psychosis services and that, to achieve this, we need a change in the way we deliver EIP: one that takes account of the different stages of psychosis and the ‘bespoke’ targeting of integrated medical, psychological and social treatments during the ‘critical period’. Illustrated with a wealth of clinical examples, this book will be of great interest to clinical psychologists, psychiatrists, psychiatric nurses and other associated mental health professionals. © 2019 Chris Jackson, Eleanor Baggott, Mark Bernard, Ruth Clutterbuck, Diane Ryles and Erin Turner.
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Aim and Objectives To investigate the relationship between traumatic growth and psychological resilience in young adult children of parents with a mental disorder and to compare them with young adult children of parents without mental disorders. Background Negative life experiences that lead to trauma can affect young adults’ psychological resilience, either positively or negatively. This study investigates levels of traumatic growth, the characteristics of psychological resilience, and the relationship between the former and latter in young adults between the ages of 18 and 23 who have parents with a mental disorder and who have parents without a mental disorder. Design This study was designed as a cross‐sectional, descriptive study and was conducted between June 1 and October 31 of 2017. Methods The sample of the study consisted of young adult children of outpatients with mental disorders who applied to the Psychiatric Polyclinics of Burdur State Hospital (334) and young adult children of parents without mental disorders who applied to different polyclinics (332). A total of 666 individuals participated in the study. Results Comparative analyses showed a significant difference between the participants who had parents with a mental disorder and participants who had parents without mental disorders in terms of the mean scale scores and all sub‐scale scores on the Post‐Traumatic Growth Inventory and Resilience Scale for Adults. Conclusion It was found that individuals who had parents without a mental disorder were negatively affected after traumatic events and that their psychological resilience was high. Relevance to Clinical Practice This study provides data on the characteristics of traumatic growth and psychological resilience levels of not only young adults whose parents have mental disorders but also young adults whose parents do not have mental disorders. In the light of this study's findings, psychiatric nurses may benefit from conducting early screening and intervention programs to help increase the psychological resilience of young adults whose parents have mental disorders. This article is protected by copyright. All rights reserved.
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We assessed carer-burden and its predictors in a traditional rural Ethiopian community in order to establish the longitudinal course of carer-burden and factors predicting changes. Using a 5-year follow-up data from the ongoing Butajira outcome study on SMI, carer-burden was assessed annually with the Family Interview Schedule (FIS). Multilevel modeling was used to identify clinical predictors of severity and rate of change of burden. Scores in all domains of carer burden decreased over time, although the greatest reduction was seen in the first year. In a univariate analyses, longitudinal reduction in burden score was predicted by longer period in remission during follow-up, while negative and positive symptom severity scores predicted higher burden score. In the fully adjusted model, poor social support predicted higher burden score (beta=0.38, 95%CI 0.04, 0.72), and longer period in remission predicted lower level of carer-burden (beta = -0.49, 95%CI = -0.89, - 0.10). Reduction in positive symptoms was associated with the instantaneous rate of reduction of burden score (beta = -0.03, 95%CI - 0.05, -0.01). There is a significant reduction in carer-burden over the years in all burden domains. Providing accessible mental health care has the potential to alleviate carer-burden, as positive symptoms are believed to be more amenable to intervention. The study also indicates that remission is associated with reduction in carer-burden.
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The development of an easy-to-administer, comprehensive coping checklist in English is reported. Initial try-out on 60 neurotics and 60 normals indicated that coping behaviours were differentially used by the two groups.
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Schizophrenia not only influences the lives of those affected but also those around them, especially the caregivers. This study examines the different determinants that are likely to contribute to the caregivers' perception of burden of care across different countries namely Malaysia and India, using the burden assessment schedule. The goals for this study were, to study the psychosocial and demographic aspects of patients suffering from schizophrenia, to study the levels of perceived burden of the Malaysian and Indian families caring for a relative with schizophrenia, and to study the determinants that contributes to the caregivers' perception of burden of care. The study was conducted in private hospitals, both in Malaysia as well as Mangalore after obtaining the necessary approval. 50 schizophrenia patients and their caregivers in Malaysia and India were chosen using the purposive sampling technique. The inclusion criteria were a minimum of 5 years since diagnosis of schizophrenia. Although the Indian caregivers perceived difficulties in several areas such as finance, family relationship, well-being and health, they still perceived burden to be lesser compared to Malaysian counterpart. Intensified community based care can reduce burden.
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This study sought to compare the extent and pattern of burden experienced by relatives of two different patient groups, one with affective disorders and the other with schizophrenia. Cross-sectional assessment of family burden using the Pai and Kapur's Interview Schedule was done in 78 patients with either bipolar disorder or recurrent major depression and 60 patients with schizophrenia diagnosed according to DSM-III. The inter-rater reliability of the interview schedule for burden was also undertaken prior to the assessment of burden in the main study sample. Doth groups were similar with regard to sociodemographic variables, duration of illness and dysfunction of patient except for lower mean age and greater number of single patients in schizophrenia group. The extent of both objective and subjective burden was significantly more in relatives of schizophrenics. The pattern of burden was, however, almost similar in both the groups. Burden was principally fell in the areas of family routine, family leisure, family interaction and finances. The emotional health of the family was relatively untouched and the impact on physical health of the caring relatives due to burden of care was almost negligible. Various sociodemographic and clinical variables related to burden as well as the implication of the findings of the study are discussed.
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The family is a major source of support for the mentally ill in India. Although Indian families show tremendous resilience in caring for their ill relatives, they experience a lot of physical and emotional distress. The burden assessment schedule (BAS) aims to assess both objective and subjective burden experienced by the primary care givers of chronic mentally ill patients. Stepwise ethnographic exploration has been used in the development of this 40 item instrument. Reliability exercises have been carried out throughout the development of this schedule. Criterion validity has been established by comparing with another standardized instrument to assess burden, which has been developed in India.
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Caring for a family member with schizophrenia is an enduring stressor and causes considerable amount of burden. The aim of the present study was to examine burden and coping in parents and spouses of persons with schizophrenia. The sample comprised of 24 parents and 24 spouses. Patients were assessed on the Global Assessment Scale (GAS), and caregivers were assessed on the Burden Assessment Schedule (BAS) and the Coping Checklist (CCL). Spouses reported greater emotional burden. Parents used more of denial as a coping strategy, while spouses used more of negative distraction strategies. On stepwise regression analysis, patient's age, educational level, and level of functioning and caregiver's use of denial as a coping strategy emerged as significant predictors of caregiver burden. The study highlights the fact that family intervention programs need to address the specific concerns of caregivers.
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To explore the needs of caregivers of inpatients with schizophrenia in India. Thirty caregivers of inpatients with schizophrenia participated in five focus group discussions (FGD), where the needs of the caregivers were discussed. The FGDs were recorded, transcribed and similar needs were grouped and ranked according to their order of importance. The main needs that emerged were regarding: managing the behaviour of patients; managing social-vocational problems of patients; health issues of caregivers; education about schizophrenia; rehabilitation; and managing sexual and marital problems of patients. This study has identified additional needs of caregivers from those found in other studies.
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The variable results of positive-negative research with schizophrenics underscore the importance of well-characterized, standardized measurement techniques. We report on the development and initial standardization of the Positive and Negative Syndrome Scale (PANSS) for typological and dimensional assessment. Based on two established psychiatric rating systems, the 30-item PANSS was conceived as an operationalized, drug-sensitive instrument that provides balanced representation of positive and negative symptoms and gauges their relationship to one another and to global psychopathology. It thus constitutes four scales measuring positive and negative syndromes, their differential, and general severity of illness. Study of 101 schizophrenics found the four scales to be normally distributed and supported their reliability and stability. Positive and negative scores were inversely correlated once their common association with general psychopathology was extracted, suggesting that they represent mutually exclusive constructs. Review of five studies involving the PANSS provided evidence of its criterion-related validity with antecedent, genealogical, and concurrent measures, its predictive validity, its drug sensitivity, and its utility for both typological and dimensional assessment.
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An instrument for assessing and evaluating what relatives know about schizophrenia was evaluated as both a pre- and a post-test for an educational programme. The Knowledge About Schizophrenia Interview (KASI) places emphasis on the functional value of the reported knowledge rather than on the recall of information; it is quick, easy to administer, can be rated reliably, and has face-validity for the relative. The educational programme increased scores from pre-test to a post-test one week after the programme. Relatives with high criticism ratings on the Camberwell Family Interview had lower scores at both tests. Relatives of less chronic patients showed lower scores at pre-test and acquired significantly more information from the programme, while relatives of more chronic patients were less influenced by the information sessions.
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The goals of the study were to describe (1) the tasks undertaken by people who care for a relative with chronic schizophrenia, according to their level of contact with the patient; and (2) any needs for further help that these caregivers might experience. Interviews and standardized questionnaires were used to collect information from 121 family caregivers whose relatives had been diagnosed an average of 14 years previously. Burden in the sense of interference in caregivers' daily lives was most marked for caregivers in high contact with the patients. Patients whom the caregivers regarded as enjoyable to live with had greater self-care and communication skills. Caregivers preferred that patients low in these skills or high in disruptive behavior live in supervised settings. Caregivers expressed particular support for earlier professional intervention in episodes of illness, information about how to lobby politicians for resources, and information about schizophrenia. These results can be used to plan interventions to reduce caregiver stress.
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Limited research has been undertaken regarding family caregivers' burden and quality of life (QOL) when providing care for a family member with schizophrenia in the People's Republic of China. This study examined the following in Chinese families caring for a member with schizophrenia: (i) the level of family caregivers' burden and QOL; (ii) the relationships among the demographic characteristics of family caregivers, the demographic characteristics of family members with schizophrenia, and family caregivers' burden and QOL; and (iii) the best predictors of family caregivers' burden and QOL. The findings suggest that family caregivers suffer a high level of burden when caring for a family member with schizophrenia. Numerous significant correlations were found among the variables. The best predictor of family caregivers' burden was found to be their level of education, while the best predictors of family caregivers' QOL were physical health and household income.
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Caregivers of patients of schizophrenia and bipolar affective disorder (BAD) experience considerable burden while caring their patients. They develop different coping strategies to deal with this burden. Longitudinal studies are required to assess the relationship between caregiver burden and coping. The present study was conducted to assess relationship between burden and coping in caregivers of clinically stable patients with schizophrenia and BAD. One hundred patients each of schizophrenia and BAD attending a psychiatric outpatient setting and their caregivers were followed up for a period of 6 months. Burden and coping strategies were assessed in the caregivers at baseline, and after 3 and 6 months using the Burden Assessment Schedule (BAS) and Ways of Coping Checklist - Hindi Adaptation (WCC - HA). Burden remained stable over 6 months and was comparable in the two groups of caregivers. Caregivers from both the groups were found to use problem focused coping strategies more often than seek social support and avoidance strategies. Scores on avoidance type of coping showed a positive correlation with the total burden scores and a number of burden factors. Caregivers of patients of schizophrenia and BAD face similar levels of burden and use similar types of coping methods to deal with it. Relationship between caregiver burden and coping is quite complex.
Article
Schizophrenia is a disabling, chronic psychiatric disorder that poses numerous challenges in its management and consequences. It extols a significant cost to the patient in terms of personal suffering, on the caregiver as a result of the shift of burden of care from hospital to families, and on society at large in terms of significant direct and indirect costs that include frequent hospitalizations and the need for long-term psychosocial and economic support, as well as life-time lost productivity. 'Burden of care' is a complex construct that challenges simple definition, and is frequently criticized for being broad and generally negative. Frequently, burden of care is more defined by its impacts and consequences on caregivers. In addition to the emotional, psychological, physical and economic impact, the concept of 'burden of care' involves subtle but distressing notions such as shame, embarrassment, feelings of guilt and self-blame. The early conceptualization of 'burden of care' into two distinct components (objective and subjective) has guided research efforts until the present time. Objective burden of care is meant to indicate its effects on the household such as taking care of daily tasks, whereas subjective burden indicates the extent to which the caregivers perceive the burden of care. Research contributions in later years (1980s to the present) have added more depth to understanding of the construct of burden of care by exploring important determinants and factors that likely contribute or mediate the caregiver's perception of burden of care. Several studies examined the role of gender, and reported that relatives of male patients with schizophrenia frequently experience more social dysfunction and disabilities than those of female patients. Similarly, a number of other studies documented the contribution of ethnicity and cultural issues to subjective burden of care. Although there is no complete agreement on whether a specific cluster of psychotic symptoms has the most impact on a caregiver's burden of care, there is agreement that the severity of symptoms increases it. An extensive literature concerning family interventions in schizophrenia has demonstrated the positive impact of various family interventions in improving family environment, reducing relapse and easing the burden of care. Although the evidence of such positive impact of family interventions in schizophrenia is well documented, such interventions are neither widely used nor appropriately integrated in care plans, and are frequently underfunded. Although the cost of caregiving is considered to be significant, there are no reliable estimates of the costs associated with such care. The majority of available literature categorized the cost of burden of care among the indirect costs of schizophrenia in general. In recent years, attempts to compare the costs of caregiving in several countries have been reported in the evolving literature on this topic. 'Burden of care' as a complex construct certainly requires the development of appropriate methodology for its costing. In achieving a balance between the patients' and caregivers' perspectives, caregivers have to be included in the care plan and adequate information and support extended to the family and caregivers. Access to better treatment for patients, including medications, psychosocial interventions and rehabilitation services, are important basic elements in easing the burden on caregivers. Other measures such as availability of crisis management, provision of legally mandated community treatment to avert hospitalization, and well informed and balanced advocacy are also important. Although research efforts have been expanded in the last 3 decades, an urgent need exists for enhancing such efforts, particularly in the development and evaluation of effective family interventions strategies. There is also a need for continued improvement in the delivery of psychiatric services to the severely psychiatrically ill and their families. As there is a lack of reliable cost information about the family burden of care specific to schizophrenia, there is an urgent need to develop reliable approaches that can generate data that can inform in policy making and organization of services.
Article
The World Health Organization (WHO) is revising the ICD-10 classification of mental and behavioural disorders, under the leadership of the Department of Mental Health and Substance Abuse and within the framework of the overall revision framework as directed by the World Health Assembly. This article describes WHO's perspective and priorities for mental and behavioural disorders classification in ICD-11, based on the recommendations of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders. The WHO considers that the classification should be developed in consultation with stakeholders, which include WHO member countries, multidisciplinary health professionals, and users of mental health services and their families. Attention to the cultural framework must be a key element in defining future classification concepts. Uses of the ICD that must be considered include clinical applications, research, teaching and training, health statistics, and public health. The Advisory Group has determined that the current revision represents a particular opportunity to improve the classification's clinical utility, particularly in global primary care settings where there is the greatest opportunity to identify people who need mental health treatment. Based on WHO's mission and constitution, the usefulness of the classification in helping WHO member countries, particularly low- and middle-income countries, to reduce the disease burden associated with mental disorders is among the highest priorities for the revision. This article describes the foundation provided by the recommendations of the Advisory Group for the current phase of work.
Article
Aim: To study the efficacy of a need based psychosocial and yoga programme on burden and coping of caregivers of in-patients with schizophrenia Method: 137 consenting family caregivers of in-patients with schizophrenia were randomized into one of the four need-based interventions (one week – one hour): yoga (n=36), psychosocial (n=32), combined (n=30), care as usual (n=39). Outcome measures (burden, coping, knowledge, anxiety and depression, social support) were rated by trained mental health professionals who were blind to the group status at the start of the study, end of the intervention, 1 month and 3 months post intervention. Results: RMANOVA showed that caregivers in all four groups improved significantly in all outcomes over time. However there were no significant differences across the groups in the burden and coping of caregivers over the 3 months study period. The improvement in knowledge about the illness in the combined intervention group was significantly more than in the other groups (F=2.62; p<0.01). Significant positive correlations was observed between patient’ symptom severity and burden of the caregivers both at the baseline (r=0.197; p<0.05) and at the final follow-up (r=0.307; p<0.01) Conclusion: This study has not shown any difference in the reduction of burden and improvement of coping among the caregivers of persons with schizophrenia, across the four groups over three months period. The most important determinant of the burden of caregivers was severity of patient’ symptoms. Future studies may employ longer duration of interventions and follow-up focusing on caregivers who continue to perceive high burden despite their patients receiving care as usual, for conclusive results.
The aims of this study were to measure changes over 3-years in caregiving burden and emotional distress in relatives of people with schizophrenia and to identify factors predicting the levels of caregiving burden. A cohort of 51 caregivers of patients with schizophrenia attending the South-Verona Community Mental Health Service was assessed over 3-years with the Involvement Evaluation Questionnaire, European Version. Predictors of caregiving burden included both caregivers' and patients' characteristics and patterns of carer-patient interaction. Baseline levels of family burden were high in worrying and urging domains. Fifty-one per cent of caregivers experienced significant emotional distress. Both overall burden and emotional distress improved. Higher patients' psychopathology, higher numbers of patient-rated needs, patients' lower global functioning and patients' poorer quality of life were found to be related to the severity of family burden. The only significant predictor of caregivers' burden at follow-up was the baseline level of caregivers' burden itself. A policy addressing the caring burden of informal caregivers beyond patients' symptoms reduction should be considered.
Article
There is a dearth of studies assessing the burden of caregivers of patients with schizophrenia and illness-related variables such as age, sex, duration of illness, domicile, martial status, education, employment and previous hospitalization. The study was conducted to measure the perception of burden by caregivers of patients with schizophrenia and its correlation with nine factors on the Burden Assessment Schedule (BAS) related to spouse, physical and mental health, external support, caregiver's routines, support to patient, responsibility-taking, other relatives, patient's behaviour and caregiver's strategy. Using BAS, we assessed the burden in a sample of caregivers of 34 patients with schizophrenia taken from the OPD of the Institute of Mental Health and Hospital, Agra. A low positive correlation was found between urban domicile and support of the patient; of domicile Agra and effect on other relations; and domicile Agra and effect on the caregiver's routine. There was a low positive correlation between age less than 30 years and the physical and mental health of the caregiver, and with taking responsibility. The t test for population correlation was significant up to 5% probability level (p<0.05) for correlation between urban domicile and support of the patient; between domicile Agra and effect on other relations; between domicile Agra and the effect on the caregiver's routine; between age less than 30 years and the physical and mental health of the caregiver; and between age less than 30 years and taking responsibility. Further studies in this field are required including one with a non-linear correlation analytic design.
Article
A chronic mental illness such as schizophrenia is a challenging task for caregivers especially in the current era of de-institutionalization. In India, few studies have attempted to directly determine the relationship between coping mechanisms and burden; in the West, studies have found that improved coping in family members can decrease the perceived burden. To evaluate the burden and coping of caregivers in relation to the level of functioning in patients with chronic schizophrenia. The sample was 100 patients with their primary caregivers attending a Psychiatry OPD. Patients were assessed on the Global Assessment of Functioning (GAF) scale while caregivers were administered the Burden Assessment Schedule (BAS) and Mechanisms of Coping (MOC) scale. Fatalism and problem-solving were the two most preferred ways of coping. Problem-focused coping, i.e. problem-solving and expressive-action decreased the burden of caregivers, while emotion-focused coping, i.e. fatalism and passivity, increased it. As the level of functioning of the patient decreased, the significance with which the coping mechanisms influenced the burden, increased. The use of problem-solving coping by caregivers showed a significant correlation with higher level of functioning in patients. Coping mechanisms such as problem-solving can decrease the burden of illness on caregivers and may even improve the level of functioning of patients.
Article
To test whether a caregiver's burden is associated with the patient's psychiatric diagnosis and to find other predictors of family burden; to provide Polish data on the issue to international literature. Of 377 eligible subjects, 141 were interviewed on admission to the mental hospital using Brief Psychiatric Rating Scale, Manchester Short Assessment of Quality of Life, Groningen Social Disability Schedule and Client's Sociodemographic and Clinical History Inventory. Their caregivers completed the Involvement Evaluation Questionnaire (IEQ). Subjects were grouped according to ICD-10 diagnoses: schizophrenia (n = 55), depression (n = 61), and anxiety and personality disorders (n = 25). Highly aggressive, suicidal and somatically unstable patients were excluded along with patients below 18 and over 65 years. Statistics included multiple regression analysis, ANOVA, Kruskal-Wallis and chi-square tests. Diagnostic groups differed with respect to sociodemographics, psychopathology and quality of life, but not with respect to mean level of social functioning. Despite between-group differences, the caregiver's burden did not differ according to the diagnostic group. Of the four dimensions of burden, "worrying" and "urging" scored the highest. Majority of caregivers worried about their relative's general health (82%), future (74%) and financial status (66%). Caregivers' characteristics and not patients' explained the largest proportion of the family burden variance (almost 23% for IEQ Tension). Higher burden seemed to be associated with the carer's age, being a parent and number of hours spent weekly on caring for the ill relative. Lower burden was associated with the carers' subjective feelings of being able to cope with problems and to pursue their own activities. Longer history of patient's illness led to higher IEQ Tension. Polish caregivers were affected by their role in the same way as their counterparts abroad, but more of them were worried. The caregiver's burden seems to be independent of the patient's diagnosis, but other factors contribute to the perceived burden, many of which are on the caregiver's part. In Poland, the overall family burden may be attributed mostly to worrying about a mentally ill relative and his future. All caregivers may benefit from psychoeducation and family interventions usually planned for those caring for relatives with schizophrenia.
Article
The purpose of the present study was to investigate the burden of the primary family caregivers of schizophrenia patients and the factors that affect caregiver burden. A total of 126 pairs of patients and their primary family caregivers were recruited from the day care and acute wards of two teaching general hospitals. Demographic information was collected. All patients went through an interview with a senior psychiatrist using the Brief Psychiatric Rating Scale (BPRS). The Caregiver Burden Inventory-Brief Version and the Chinese Health Questionnaire (CHQ) were used to assess the caregiver burden and the caregivers' health condition. One-way analysis of variance and Pearson correlation were used to analyze the relationship between demographic factors and caregiver burden. Multiple regression was used to analyze predictors of burden of caregivers. Statistical significance in this study was defined as P <or= 0.05. The caregiver burden scores (25.9 +/- 10.7; range, 3-61) indicated a moderate burden level. Among the five dimensions of burden, caregiver anxiety (2.13 +/- 0.86) was the highest, followed by dependency of the patient (1.85 +/- 1.02), feeling shame and guilt (1.56 +/- 1.02), and family interference (1.43 +/- 0.83). The burden level of stigmata (1.32 +/- 1.24) was the lowest. The first three rankings of burden were 'I worry about his/her safety when he/she is alone' (2.26 +/- 1.15), 'I worry that she/he will become sick at any time' (2.23 +/- 1.10), and 'I feel he/she depends on me very much' (2.02 +/- 1.29). Patient satisfaction with medical staff support (P = 0.00), CHQ scores of the caregivers (P = 0.00), and the BPRS scores of the patients (P = 0.01) were significantly associated with the caregiver burden scores. The physical and mental health condition of the primary family caregiver of schizophrenia patients was the most important factor determining the caregiver burden level. Comprehensive multidisciplinary care of chronic schizophrenia patients is needed, care that supports the needs and improves the psychiatric symptoms of the patients, helps to decrease the caregiver burden level, and facilitates family participation in treatment.
Article
Investigated were changes over time for caregivers of dementia patients, with a focus on factors associated with nursing home placement. Caregivers were all spouses, and at the time of the initial interview were caring for the patient at home. Subsequent nursing home placement was more strongly associated with subjective factors, particularly caregivers' perceived burden, than with objective indicators of the severity of dementia. Although wives initially reported more burden than husbands, no differences were found at the follow-up.
Article
This paper describes the construction of a semi-structured interview schedule to assess the burden placed on families of psychiatric patients living in the community. The Indian population studied found their sick relatives most burdensome in respect of the effect of the illness on family finances, the disruption of normal family activities and the production of stress symptoms in family members other than the patient. The inter-investigator reliability of the interview schedule proved to be high.
Article
As schizophrenia is a heterogeneous condition with a variety of possible causes, it is sensible to combine biological and social treatment. Neuroleptic drugs give partial protection against environmental stress, but need to be supplemented. The programme developed on the basis of research on relatives' expressed emotion begins with education about schizophrenia for patients and relatives. Family sessions in the home are run in parallel with a relatives' group, and are aimed at improving communication, teaching problem-solving skills, lowering criticism and overinvolvement, reducing social contact between patient and relatives, expanding social networks, and lowering expectations. Individual work with the patient is often undertaken alongside the family sessions, and includes social-skills training, anxiety management, and a cognitive approach to persistent psychotic symptoms. Therapists take a central role in coordinating the variety of services needed by patient and relatives.
Article
Restriction in involuntary hospital admission and reduced lengths of inpatient stay increase burden on relatives of individuals with schizophrenia. This study aims at assessing the relationship between caregiver burden and behavioural disturbances of the affected, e.g. threats, nuisances, but also substance use and aggression. Two weeks before the last hospitalisation of the affected are considered as being the most burdensome period for relatives. Sixty-four relatives of schizophrenic patients were assessed by the semi-structured "Interview for Measuring the Burden on the Family". Subscales and total scales of burden were calculated. Predictors were identified by regression analyses. The most important predictor of burden is burden in the relationship between caregiver and the affected representing the changes in the relationship occurring in acute illness. Threats, nuisances, time spent with the affected, and burden due to restricted social life and leisure activities were additional predictors, but not aggression or substance abuse. Eighty-five percent of the cases could be assigned correctly. To better encounter burden, relatives should learn to cope with disturbing behaviour of and altered relationship to the affected, but also with their own needs. Finally, relatives must be included in the decision whether or not an affected person should be hospitalised.
Article
De-institutionalization of psychiatric patients has led to a greater emphasis on family management in the community, and family members are often overwhelmed by the demands that caring for a patient with schizophrenia involves. Most studies of family burden in schizophrenia have taken place in developed countries. The current study examined family burden and its correlates in a regional area of a medium income country in South America. Sixty-five relatives of patients with schizophrenia who were attending a public mental health out-patient service in the province of Arica, Chile, were assessed on Spanish versions of the Zarit Caregiver Burden Scale and SF-36 Health Survey (SF-36). Average levels of burden were very high, particularly for mothers, carers with less education, carers of younger patients and carers of patients with more hospitalisations in the previous 3 years. Kinship and number of recent hospitalisations retained unique predictive variance in a multiple regression. Burden was the strongest predictor of SF-36 subscales, and the prediction from burden remained significant after entry of other potential predictors. In common with families in developed countries, family members of schizophrenia patients in regional Chile reported high levels of burden and related functional and health impact. The study highlighted the support needs of carers in contexts with high rates of poverty and limited health and community resources.
Article
To identify patients' and carers' perceptions of need in inpatient and community settings and investigate the relationship between need and caregiver burden. The study was conducted across a metropolitan mental health service in Sydney, Australia. Patients (n = 407) and carers (n = 50) completed the Camberwell Assessment of Need Short Appraisal Schedule. Carers also completed a shortened version of the Involvement Evaluation Questionnaire to assess caregiver burden. When completing the assessment tools, patients and carers in hospital settings were asked to consider the 4 weeks preceding hospitalisation; in the community, patients and carers were asked to consider the previous 4 weeks. These data show a high percentage of patients in hospital and community settings have unmet needs for company, daytime activities and intimate relationships. Inpatients had more unmet needs than community based patients. Agreement between patients' and carers ratings' of need ranged from 'poor' to 'moderate'. There was a strong relationship between unmet need and burden from the carer's perspective. Patients with and without carers had similar numbers of needs. Carers of patients recently admitted to hospital reported a significantly higher burden. Carers of inpatients experienced significantly more burden than carers of outpatients. Opportunities to access support, information and education should be readily available and not contingent upon demonstrating a close familial relationship to the patient. We found that unmet need was significantly related to burden, suggesting that meeting patient needs could reduce carer burden.
Article
Caregivers burden is an important area of clinical work that is often neglected, particularly in relatives of patients with psychosis. The aim of the present study is to examine if some demographic factors and symptoms of illness bear a relationship with burden and distress levels in their caregivers. This cross-sectional study involved patients with chronic schizophrenia and their relatives. The Carer Burden Index and the 30-item General Health Questionnaire was used to assess burden and distress in relatives, and positive and negative symptoms of schizophrenia in the patients were rated using the Brief Psychiatric Rating Scale and the Scale for Assessment of Negative Symptoms, respectively. High levels of emotional distress and burden were observed in the caregivers and they were significantly associated with some demographic variables. They were also significantly associated with positive and negative symptoms of schizophrenia. Because Nigerian families continue to play a primary caregiving role for their relatives experiencing schizophrenia, there is a need to focus on specific interventions that will reduce their high levels of distress and burden.