|Year : 2020 | Volume
| Issue : 1 | Page : 13-18
Caregiver burden and quality of life in primary caregivers of schizophrenia patients: A cross-sectional study from a tertiary care hospital
Bilal Ahmad Bhat, Shabir Ahmad Dar, Rouf Ahmad Mir, Arshad Hussain
Department of Psychiatry, Institute of Mental Health and Neurosciences, Kashmir, Srinagar, Jammu and Kashmir, India
|Date of Submission||18-Mar-2020|
|Date of Acceptance||21-Apr-2020|
|Date of Web Publication||11-Jun-2020|
Dr. Bilal Ahmad Bhat
Institute of Mental Health and Neurosciences, Kashmir, Kathi Darwaza, Srinagar - 190 003, Jammu and Kashmir
Source of Support: None, Conflict of Interest: None
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.
Keywords: Burden, caregiver, quality of life, schizophrenia
|How to cite this article:|
Bhat BA, Dar SA, Mir RA, Hussain A. Caregiver burden and quality of life in primary caregivers of schizophrenia patients: A cross-sectional study from a tertiary care hospital. Acta Med Int 2020;7:13-8
|How to cite this URL:|
Bhat BA, Dar SA, Mir RA, Hussain A. Caregiver burden and quality of life in primary caregivers of schizophrenia patients: A cross-sectional study from a tertiary care hospital. Acta Med Int [serial online] 2020 [cited 2020 Nov 29];7:13-8. Available from: https://www.actamedicainternational.com/text.asp?2020/7/1/13/286417
| Introduction|| |
Schizophrenia, a severe mental disorder, typically begins in late adolescence or early adulthood and is characterized by profound disruptions in thinking, affecting language, perception, and the sense of self, and it often includes psychotic experiences, such as hallucinations or delusions. The World Health Organization while providing the facts of this disorder mentions that it affects >21 million people worldwide, is a treatable disorder, one in two people living with schizophrenia does not receive care for the condition, and care of persons with schizophrenia can be provided at the community level, with an active family and community involvement. There has been 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. It is estimated that about 70% of people with schizophrenia in Asian countries live with their families or friends. Caregivers are the persons who have significant responsibility for the well-being of a person diagnosed with schizophrenia. In developing countries, the structure of families and economic difficulties resist the use of paid caregivers for patients with schizophrenia. The burden of caring for these patients is further increased by challenges in the health system, such as inadequate health personnel and poor infrastructure. As a result of caregiving, they 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. To understand the quality of life (QoL) and extent of burden perceived by caregivers while caregiving a family member with a diagnosis of schizophrenia, we framed this study as in our state, till now, no such study has been conducted.
| Materials and Methods|| |
This was a cross-sectional study conducted in a tertiary care hospital from June 2019 to September 2019. This study was approved by the institute's ethics committee. The study population included schizophrenia patients undergoing treatment as outpatients and their caregivers. All the diagnoses were reviewed using DSM-5 criteria. Those who were not willing to participate were excluded. Schizophrenia patients not accompanied by primary caregiver or caregivers who came without patients to collect medications were also excluded. Written informed consent was obtained from the patients as well as their caregivers. The Positive and Negative Syndrome Scale (PANSS) was administered to the patients. To assess QoL in caregivers, the Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL) was administered to them. The perceived burden in caregivers was assessed by administering Zarit Burden Interview (ZBI) in them.
PANSS is a 30-item scale in which there are three component scales in its, i.e., a seven items positive Scale, a seven items Negative Scale and a sixteen items General Psychopathology Scale. According to the severity of symptoms, each item is rated from 1 to 7, with one for absent to seven for extreme.
S-CGQoL, developed by Richieri et al., is a multidimensional self-administered instrument. There are 25 items in it with options from Never to Always, describing seven dimensions (Psychological and Physical Well-Being; Psychological Burden and Daily Life; Relationships with Spouse; Relationships with Psychiatric Team; Relationships with Family; Relationships with Friends; and Material Burden). Each item was rated from 0 to 4 with 0 representing the worst response and 4 representing the best possible response. Accordingly, all dimension scores were transformed into a 0–100 scale with 0 score for worst QoL and 100 score for best QoL.
ZBI by Zarit et al. is a 22 item self-report, used to assess the perceived burden of rendering care. Response options in each item range from 0 to 4. Accordingly, the cumulative score ranges from 0 to 88. The score is interpreted as 0–21: Little or no burden, 21–40: Mild-to-moderate burden, 41–60: Moderate-to-severe burden, 61–88: Severe burden.
SPSS version 16 (Statistical Package for the Social Sciences; IBM Software, Armonk, NY, USA) was used for the data analysis. Mean scores on SCQoL and ZBI were compared among sociodemographic variables of patients and caregivers using independent samples t-test and analysis of variance. To examine the relationship among various key variables and also with sociodemographic factors, Pearson's correlation coefficient was obtained. Multiple regression analysis was used to identify predictor variables that have an influence on the manifestation of burden on caregivers.
| Results|| |
The mean age of caregivers was 40.49 ± 12.65 years. A majority of them were men (70.7%). Around 2/3rd (64%) of them were from a rural background, with a majority of them married (84%). With regard to occupation, 18.7% were employed, whereas 30.7% were skilled workers, 50.6% were unskilled workers with 80% of them having a monthly income of >5000 RS. Educational background was low only around 6% of them being graduate or above. The majority of them had a family size between 5 and 10 (76%).
The mean age of patients was 37.45 ± 9.55 years. Majority of them were men (69.3%). Around 2/3rd (64%) of them were from a rural background. With regard to occupation, most of the patients were unemployed (65.3%). Only 5.3% were employed and had an income of >5000. About 84% of our patients had no income of their own. As with caregivers, the educational background was low in patients with only around 4% of them being graduate or above. Above 53.3% were unmarried and 14.7% were divorced. Around 70% had a duration of illness 5 years or more. [Table 1] shows the distribution of three domains of PANSS in patients.
|Table 1: Distribution of positive and negative syndrome scale sub.scale score among schizophrenia patients|
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Quality of life profile of caregivers
All dimension scores in the S-CGQoL questionnaire were linearly transformed to a 0–100 scale, with 100 indicating the best possible level of QoL and 0 the worst. The mean score on the S-CGQoL questionnaire was 44.8 ± 8.67, with a range of 28–63. 76% of caregivers had a score <50. [Table 2] shows a comparison of mean scores on S-CQoL among various sociodemographic variables of patients and caregivers.
|Table 2: Comparison of caregiver quality of life among sociodemographic variables|
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Burden profile of caregivers
The mean score on ZBI was 38.28 ± 11.19, with a range of 19–63. 64% of caregivers perceived mild-to-moderate burden, whereas 30.7% of them perceived moderate-to-severe burden. Little or no burden was present only in one caregiver and severe burden was present in three caregivers. [Table 3] shows a comparison of mean scores on ZBI among various sociodemograhic variables of patients and caregivers, respectively.
|Table 3: Comparison of burden on caregivers among sociodemographic variables|
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[Table 4] depicts the correlation between various variables. As can be seen in this table, there is a significant negative correlation between QoL and the burden on caregivers (r = −0.478; P = 0.0001). QoL was also significantly correlated with duration of illness of patients (r = 0.243; P = 0.014). There was no significant correlation between QoL and other variables. Caregivers burden was also significantly and positively correlated with manifestation of negative symptoms in patients (r = 0.287; P = 0.013), but with other variables, it had a nonsignificant correlation. General psychopathology in patients was correlated positively with manifestation of both positive symptoms (r = −0.419; P = 0.001) and negative symptoms (r = −0.319; P = 0.005).
Predictors of caregiving burden
A multiple linear regression method was used to see if the scores on subscales of PANSS and the duration of illness predicted the extent of burden perceived by the caregivers, i.e., the total score on ZBI. Accordingly, the dependent variable was the score on ZBI for the caregivers, whereas independent variables were the scores on three subscales of PANSS and duration of illness. Using the enter method, we found the extent of burden perceived by caregivers was not explained by the total PANSS score with a variance of 3.6% (F = 2.97; R2 = 0.039, R2 adjusted = 0.036, P = 0.09). [Table 4] depicts subscales of PANSS predicting the burden perceived by the caregivers [Table 5]. However, the score on the negative symptom scale significantly predicted the burden perceived by caregivers.
|Table 5: Regression analysis of positive and negative syndrome scale sub.scale scores and the duration of illness with caregiver burden|
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| Discussion|| |
Our study found that on PANSS, positive symptoms, negative symptoms, and general psychopathology were highly prevalent among schizophrenia patients. On correlating these three subscales of PANSS with scores on S-CQoL and ZBI, we found there was no significant correlation except for a significant positive correlation of negative symptoms and burden on caregivers. Like our study, Stanley et al. did not found any significant relationship between the three subscales of the PANSS and caregiver burden but found caregiver QoL negatively correlated with the general psychopathology subscale. However, there have been studies previously which have found a positive correlation between PANSS score and burden on caregivers. However, there has been a concern that mere improvement in clinical symptoms in not sufficient to alleviate burden on caregivers and improve their QoL. In our study, most of caregivers perceived mild-to-moderate or moderate-to-severe burden while caregiving an individual with schizophrenia. 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.,,,,,, 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., This can be attributed to the differences in methodology, cultural differences in these countries, and differences in sociodemographic characteristics of caregivers. Further, studies have demonstrated that caregivers of schizophrenia patients bear other types of psychological and social burdens that are not easily quantified., Sociodemographic characteristics of patients and caregivers like residence, marital status, family size, and durations of illness did not have a significant influence on burden perceived by caregivers. However, in caring female patients, caregivers perceived significantly more burden in comparison to caregiving a male patient. Our results are in concordance with many studies, in which sociodemographic variables were found to have no influence on the burden perceived by caregivers., However, with regard to gender, there are some studies which have found more burden perceived by male caregivers and some studies which have found more burden perceived by female caregivers but an earlier study from India did not found any significant difference in burden perceived by caregivers based on the gender of patients.,, Caregiver burden was significantly and positively correlated with negative symptoms in patients, whereas other two subscales of PANSS did not show any significant correlation. There are many studies which have shown a positive correlation between PANSS scores and caregiver burden., However, some studies have not found any significant correlation between PANSS scores and caregiver burden., 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. Therefore to address caregiver burden, it is very important to effectively treat schizophrenia patients. In our study, through regression analysis, the total PANSS score did not predict burden on caregivers. This is in contradiction with previous studies that have shown higher PANSS scores predicting higher burden on caregivers in several domains. 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.,,,, Stanley et al. and Aydin et al. did not found any PANSS subscale as a predictor of the burden on caregivers., Most of the caregivers had low QoL in various dimensions on the S-CGQoL scale. This is in agreement with most of the earlier studies from India as well as outside India.,,,,, It has been reported earlier that caregivers of patients with schizophrenia are ten times more likely to remain isolated with poor QoL in comparison to normal matched controls. However, when comparing mean scores of SCGQoL among sociodemographic characteristics of patients and their caregivers, there was no significant influence of these characteristics on caregivers QoL. In literature, most of the studies have found low QoL in caregivers of schizophrenia patients who are young, female, with low educational level, unemployed, and are parents of the patients.,, However, there are many studies as well, including studies from India which have found no differences in QoL of caregivers in relation to sociodemographic characteristics.,, There was a significant positive correlation between caregivers' QoL and duration of illness, indicating the chronic nature of this disorder does have an impact on caregivers. This is consistent with previous studies that have shown patient characteristics such as duration of illness, positive symptoms, and negative symptoms significantly correlated with caregivers QoL.,,, However, in our study, scores on subscales of PANSS were not significantly correlated with QoL. In a recent study, clinical improvement in schizophrenia patients was not found to have any significant effect on the QoL of caregivers. However, previously, it has been found that negative symptoms and general psychopathology contribute significantly to low QoL in caregivers of schizophrenia. Conversely, with improvement in QoL of caregivers, psychotic symptoms in patients may improve, which indirectly will have an impact on QoL of patients. We found a significant correlation between low QoL and high burden in caregivers. A recent study from India did not report this correlation, but in literature, it has been shown that low QoL and high burden in caregivers are positively correlated.,,,
Our study was cross-sectional in nature, which limits our ability to capture the changing dynamics of caregiving as experienced by caregivers at different points of time. The caregiver burden is multidimensional, but we took it as a one-dimensional variable; thus, it does not give us an insight into various areas where they experience more burden. The adverse mental health consequences of caregiving an individual with schizophrenia have been reported in many previous studies, but we omitted this important aspect of caregivers in our study.,, It has also been demonstrated that coping strategies used by caregivers do have an influence on the burden perceived by them and this also was ignored in our study. Cultural variations may also limit wider generalizations of our results. Lack of a control group in our study limits the specificity of our results to schizophrenia caregivers.
| Conclusion|| |
To conclude findings of our study, caregivers of schizophrenia patients experience considerable level of burden. To a large extent, the burden on caregivers was not related to sociodemographic variables of patients and caregivers and the clinical profile, except for significant correlations between negative symptoms in patients and score on ZBI. In addition, negative symptoms in patients were the only predictor of burden on caregivers in our study. We found a score of <50 on S-CGQoL in around two-third of our participants. Like caregivers burden, QoL was not related to sociodemographic variables of patients and caregivers and to the clinical profile of patients. However, QoL was related positively to the duration of illness and negatively to burden on caregivers. High perceived burden and low QoL in caregivers of schizophrenia patients need an address. They should be provided adequate financial, educational, and psychosocial support. In addition, family interventions such as psychoeducation and provision of support groups for caregivers of schizophrenia patients need to be started to reduce their burden and increase their QoL.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Rofail D, Regnault A, le Scouiller S, Lambert J, Zarit SH. Assessing the impact on caregivers of patients with schizophrenia: Psychometric validation of the Schizophrenia Caregiver Questionnaire (SCQ). BMC Psychiatry 2016;16:245.
Chan SW. Global perspective of burden of family caregivers for persons with schizophrenia. Arch Psychiatr Nurs 2011;25:339-49.
Opoku-Boateng YN, Kretchy IA, Aryeetey GC, Dwomoh D, Decker S, Agyemang SA, et al
. Economic cost and quality of life of family caregivers of schizophrenic patients attending psychiatric hospitals in Ghana. BMC Health Serv Res 2017;17:697.
Ae-Ngibise KA, Doku VC, Asante KP, Owusu-Agyei S. The experience of caregivers of people living with serious mental disorders: A study from rural Ghana. Glob Health Action 2015;8:26957.
Kay SR, Fiszbein A, Opler LA. The positive and negative syndrome scale (PANSS) for schizophrenia. Schizophr Bull 1987;13:261-76.
Richieri R, Boyer L, Reine G, Loundou A, Auquier P, Lançon C, et al
. The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL): Development and validation of an instrument to measure quality of life of caregivers of individuals with schizophrenia. Schizophr Res 2011;126:192-201.
Sh Z, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist. 1980;20(6):649-55.
Stanley S, Balakrishnan S, Ilangovan S. Psychological distress, perceived burden and quality of life in caregivers of persons with schizophrenia. J Ment Health 2017;26:134-41.
Ponangi C, Thatisetti PV, Dronanmraju P. Caregiver burden in patients with schizophrenia. Arch Ment Health 2014;15:117-21. [Full text]
Rhee TG, Rosenheck RA. Does improvement in symptoms and quality of life in chronic schizophrenia reduce family caregiver burden? Psychiatry Res 2019;271:402-4.
Ampalam P, Deepthi R, Vadaparty P. Schizophrenia-insight, depression: A correlation study. Indian J Psychol Med 2012;34:44-8. [Full text]
Ganguly KK, Chadda RK, Singh TB. Caregiver burden and coping in schizophrenia and bipolar disorder: A qualitative study. Am J Psychiatr Rehabil 2010;13:126-42.
Kate N, Grover S, Kulhara P, Nehra R. Relationship of caregiver burden with coping strategies, social support, psychological morbidity, and quality of life in the caregivers of schizophrenia. Asian J Psychiatry 2013;6:380-8.
Mandal P, Prakash S, Sagar R. Primary caregivers of schizophrenia outpatients: Burden and its correlates. Delhi Psychiatry J 2014;17:343-8.
Caqueo-Urízar A, Urzúa A, Jamett PR, Irarrazaval M. Objective and subjective burden in relatives of patients with schizophrenia and its influence on care relationships in Chile. Psychiatry Res 2016;237:361-5.
Lowyck B, De Hert M, Peeters E, Wampers M, Gilis P, Peuskens J. A study of the family burden of 150 family members of schizophrenic patients. Eur Psychiatry 2004;19:395-401.
Jagannathan A, Thirthalli J, Hamza A, Nagendra HR, Gangadhar BN. Predictors of family caregiver burden in schizophrenia: Study from an in-patient tertiary care hospital in India. Asian J Psychiatr 2014;8:94-8.
Souza AL, Guimarães RA, de Araújo Vilela D, de Assis RM, de Almeida Cavalcante Oliveira LM, Souza MR, et al
. Factors associated with the burden of family caregivers of patients with mental disorders: A cross-sectional study. BMC Psychiatry 2017;17:353.
Durmaz H, Okanlı A. Investigation of the effect of self-efficacy levels of caregiver family members of the individuals with schizophrenia on burden of care. Arch Psychiatr Nurs 2014;28:290-4.
Knock J, Kline E, Schiffman J, Maynard A, Reeves G. Burdens and difficulties experienced by caregivers of children and adolescents with schizophrenia-spectrum disorders: A qualitative study. Early Interv Psychiatry 2011;5:349-54.
Roick C, Heider D, Bebbington PE, Angermeyer MC, Azorin JM, Brugha TS, et al
. Burden on caregivers of people with schizophrenia: Comparison between Germany and Britain. Br J Psychiatry 2007;190:333-8.
Thunyadee C, Sitthimongkol Y, Sangon S, Chai-Aroon T, Hegadoren KM. Predictors of depressive symptoms and physical health in caregivers of individuals with schizophrenia. Nurs Health Sci 2015;17:412-9.
Sreeja I, Sandhya G, Rakesh I, Singh M. Comparison of burden between family caregivers of patients having schizophrenia and epilepsy. Internet J Epidemiol 2009;6:1-2.
Aydin A, Eker SS, Cangur S, Sarandol A, Kirli S. The association of the level of caregiver burden with the sociodemographic variables and the characteristics of the disorder in schizophrenic patients. Noropsikiyatri Arsivi Arch Neuropsychiatry 2009;46:10-4.
Madivalkar SD, Popuri S, Chaukimath SP. Assessment of burden in caregivers of patients with chronic schizophrenia; who attend the tertiary care center. J Med Res 2018;4:263-6.
Aggarwal M, Avasthi A, Kumar S, Grover S. Experience of caregiving in schizophrenia: A study from India. Int J Soc Psychiatry 2011;57:224-36.
Chakrabarti S. Research on family caregiving for mental illness in India and its impact on clinical practice: Are we doing enough to help families? Indian J Soc Psychiatry 2016;32:19-24. [Full text]
Grover S, Pradyumna, Chakrabarti S. Coping among the caregivers of patients with schizophrenia. Ind Psychiatry J 2015;24:5-11.
] [Full text]
Li J, Lambert CE, Lambert VA. Predictors of family caregivers' burden and quality of life when providing care for a family member with schizophrenia in the People's Republic of China. Nurs Health Sci 2007;9:192-8.
Hayes L, Hawthorne G, Farhall J, O'Hanlon B, Harvey C. Quality of life and social isolation among caregivers of adults with schizophrenia: Policy and outcomes. Community Ment Health J 2015;51:591-7.
Awadalla AW, Ohaeri JU, Salih AA, Tawfiq AM. Subjective quality of life of family caregivers of community living Sudanese psychiatric patients. Soc Psychiatry Psychiatr Epidemiol 2005;40:755-63.
Boyer L, Caqueo-Urízar A, Richieri R, Lancon C, Gutiérrez-Maldonado J, Auquier P. Quality of life among caregivers of patients with schizophrenia: A cross-cultural comparison of Chilean and French families. BMC Fam Pract 2012;13:42.
Rammohan A, Rao K, Subbakrishna DK. Burden and coping in caregivers of persons with schizophrenia. Indian J Psychiatry 2002;44:220-7.
] [Full text]
Ribé JM, Salamero M, Pérez-Testor C, Mercadal J, Aguilera C, Cleris M. Quality of life in family caregivers of schizophrenia patients in Spain: Caregiver characteristics, caregiving burden, family functioning, and social and professional support. Int J Psychiatry Clin Pract 2018;22:25-33.
Caqueo-Urízar A, Alessandrini M, Urzúa A, Zendjidjian X, Boyer L, Williams DR. Caregiver's quality of life and its positive impact on symptomatology and quality of life of patients with schizophrenia. Health Qual Life Outcomes 2017;15:76.
Caqueo-Urízar A, Gutiérrez-Maldonado J, Ferrer-García M, Morales AU, Fernández-Dávila P. Typology of schizophrenic symptoms and quality of life in patients and their main caregivers in northern Chile. Int J Soc Psychiatry 2013;59:93-100.
Foldemo A, Gullberg M, Ek AC, Bogren L. Quality of life and burden in parents of outpatients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 2005;40:133-8.
Gater A, Rofail D, Tolley C, Marshall C, Abetz-Webb L, Zarit SH, et al
. “Sometimes it's difficult to have a normal life”: Results from a qualitative study exploring caregiver burden in schizophrenia. Schizophr Res Treat 2014;2014:368215.
Gupta S, Isherwood G, Jones K, Van Impe K. Assessing health status in informal schizophrenia caregivers compared with health status in non-caregivers and caregivers of other conditions. BMC Psychiatry 2015;15:162.
Stanley S, Bhuvaneswari GM, Bhakyalakshmi S. Mental health status and perceived burden in caregiving spouses of persons with psychotic illness (A study from India). Soc Work Ment Health 2016;14:530-44.
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]