|Year : 2015 | Volume
| Issue : 2 | Page : 144-149
Quality of life of caregivers of mentally ill patients in a tertiary care hospital
Sabreen Basheer1, Khera Anurag1, Rajat Garg2, Raj Kumar1, Shruti Vashisht1
1 Department of Community Medicine, Armed Forces Medical College, Pune, Maharashtra, India
2 Department of Psychiatry, Armed Forces Medical College, Pune, Maharashtra, India
|Date of Web Publication||4-May-2016|
Department of Community Medicine, Armed Forces Medical College, Pune, Maharashtra
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Objectives: To explore the quality of life (QOL) and its association with psycho-sociodemographic factors among caregivers of mentally ill patients in a tertiary care hospital in urban India. Materials and Methods: Sample consisted of 100 caregivers attending outpatient services in a tertiary care hospital. Data was collected using World Health Organization QOL-BREF (WHOQOL-BREF) questionnaire. The higher score meant a better QOL. Results: Of 100 caregivers, 66% were men, 47% were parents and 64% were literate. 52% of the caregivers were providing care for 1–5 years. The mean total score of QOL of the study population was 13.34 with the highest score 15.15 in the physical domain, followed by 12.75 in social, 12.96 in environmental, and 12.52 in psychological domain. In a multiple linear regression model, caregiver's elderly age was significantly associated most of the domains of WHOQOL. Conclusion: Caregivers of mentally ill patients have diminished QOL levels. Studies measuring QOL among caregivers can help initiate early intervention among the vulnerable caregivers. This study would help in increasing the awareness among the professional health care workers, to identify at risk caregivers. Health workers by providing better health services and better psycho-education to the caregivers can improve their QOL.
Keywords: Caregiver, mentally ill patients, quality of life, World Health Organization quality of life
|How to cite this article:|
Basheer S, Anurag K, Garg R, Kumar R, Vashisht S. Quality of life of caregivers of mentally ill patients in a tertiary care hospital. Ind Psychiatry J 2015;24:144-9
The role of caregivers has gained a greater role, as a result of increasing shift of psychiatric care to the community. Deinstitutionalization and increasing psychiatric care to the community has led to increase in the role of caregivers of mentally ill patients. In today's world, psychiatric patients receive relatively short inpatient care and early discharge from the hospital, which adds to the important role of a caregiver. In India, where rehabilitation services are almost nonexistent, and there is no social security system, the role of the family becomes more important. In India, studies show the majority of the people with schizophrenia or depression stay with their families., On one hand, this development has led to immense progress for the patient because any hospital service cannot replace family environment, but on the other hand caregivers face immense physical, social, emotional, and financial burden.
A caregiver has been defined as a family member who has been living with the patient and has been closely involved in his/her activities of daily living, health care, and social interaction for more than a year. The World Health Organization (WHO) states caregiver burden as “the emotional, physical, financial demands, and responsibilities of an individual's illness that are placed on the family members, friends, or other individuals involved with the individual outside the health care system.” Relatives of patients with major psychiatric disorders feel burdened, as these disorders are unpredictable and long lasting. Previous studies have found that burden is experienced in the form of disruption of family life, family interactions, well-being, health, and financial burden affecting their quality of life (QOL)., The World Federation of Mental Health has issued a report supporting that caring for those with a chronic condition such as depression requires tireless effort, energy, and empathy and greatly impacts the daily lives of caregivers.
WHO defines QOL as individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns. QOL encompasses several important dimensions, including psychological status, functional abilities, personal well-being, social interaction, economic status, vocational status, and physical health. In the midst of caregiving burden, most of the caregivers suffer from poor psychological health and the same progresses to develop mental illness and have higher rates of depression than the general population., Caregivers had a 63% higher risk of mortality than noncaregivers. Almost two-third of all caregivers report difficulty in their employment.
Most of the studies have evaluated the QOL of mentally ill patients, but there are only a few that have evaluated QOL of apparently healthy caregivers of mentally ill patients. The aim of this study was to explore the QOL and its associations with certain psycho-sociodemographic factors among caregivers of mentally ill patients in a tertiary care hospital in urban India.
| Materials and Methods|| |
This cross-sectional analytical study was conducted in the psychiatric outpatient department (OPD) of a tertiary care hospital in urban India for a period of 5 months. Institutional ethics committee approval was obtained prior to the onset of the study.
The study population was caregivers of psychiatric patients (diagnoses were based on International Classification of Diseases-10) attending outpatient services in a tertiary care hospital who were more than 18 years of age and who fulfilled both the major criteria and one of the minor criteria. Major criteria were living with the patient, at least 3 days in a week for at least 6 months during the previous year and closely involving in activities of daily living of the patients. Minor criteria were financial or business assistance, giving emotional support, daily supervision and personal care, the arrangement of doctor's appointment (making calls/transportation/explanations/translations), or involved in medical management. The sample size was calculated to estimate 95% confidence interval for the mean of various domains of QOL with 5% relative error of margin.
The maximum sample size works out to be 69. However, 100 caregivers of psychiatric patients were studied for better estimates. Every third eligible caregiver was selected by systematic random sampling.
After taking their informed consent, data was collected using self-administered/interviewer assisted (in case of insufficient ability) WHOQOL-BREF questionnaire. QOL questionnaire (WHOQOL-BREF) measured the main study outcome. There are four main domains derived from the 26 items in this questionnaire, comprising of the physical, psychological, social, and environmental domain. These four domains were shown to be valid measures of overall QOL and health. This questionnaire is cross-culturally sensitive and has good, excellent reliability and validity. The higher score meant a better QOL. In this study, the Hindi and English versions of WHOQOL-BREF were used.
Data entry and statistical analysis were conducted using Statistical Package for Social Sciences (SPSS) program version 22 (IBM Corporation, Armonk, New York, Chicago). Descriptive analysis was performed including frequencies, percentages, ranges, means, and standard deviations. To investigate the association between participants' characteristics and their QOL, unpaired t-test was used. Multiple linear regression (with the backward method) was used for control confounding effects. Transformed scores were used for statistical analysis in four domains. In this study, the level of significance was set at P < 0.05 for all analysis.
| Results|| |
Of 100 caregivers, 66% were men, the mean age of the study population was 43.80 ± 12.39 (range: 20–80), 47% were parents, 61% were employed, and 64% were literate. 52% of the caregivers were providing care for 1–5 years and 43% provides care for 1–5 h daily [Table 1].
|Table 1: Characteristics of caregivers of mentally ill patients in a tertiary care hospital|
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The mean total score of QOL of the study population was 13.34 with the highest score 15.15 in the physical domain, followed by 12.75 in social, 12.96 in environmental and 12.52 in the physical domain. The distribution of mean QOL Scores of four domains and total of WHOQOL-BREF according to caregiver gender, age, average daily caregiving hours, total number of caregiving years, their kinship with the patient, caregiver education, and working status are presented in [Table 2] and [Figure 1],[Figure 2],[Figure 3],[Figure 4].
|Table 2: Comparison of the WHOQOL-BREF mean scores in four domains according to study variables in caregivers of mentally ill patients in a tertiary care hospital|
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|Figure 1: Comparison of world health organization quality of life-BREF scores in four domains according to age|
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|Figure 2: Comparison of world health organization quality of life-BREF scores in four domains according to caregiver's kinship|
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|Figure 3: Comparison of world health organization quality of life-BREF scores in four domains according to caregiving hours|
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|Figure 4: Comparison of world health organization quality of life-BREF scores in four domains according to caregiver education status|
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In the physical domain, the mean WHOQOL scores of caregiver's age, education status, working status, kinship with the patient were statistically significant. In psychological domain, the mean WHOQOL scores of caregiver's age, education status, marital status, kinship with the patient, daily caregiving hours, chronic illness existence, and patient's diagnosis were statistically significant. In the social domain, the mean WHOQOL scores of caregiver's age and education status were statistically significant. In environmental domain, the mean WHOQOL scores of caregiver's age, education status, marital status, and kinship with the patient were statistically significant.
To adjust for confounders, we used multiple linear regression to identify factors affecting the QOL [Table 3]. Patient's diagnosis, caregiver age, average daily caregiving hours, total numbers of caregiving years, their kinship with the patient were the major factors which influenced the association with various domains. The variability (R2) in the multiple linear regression model as explained by the above variables was 45% in physical domain, 39% in psychological domain, 43% in social domain, and 26% in environmental domain.
|Table 3: Multiple linear regression analysis of significant factors associated with QOL|
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| Discussion|| |
QOL as a measurement can identify groups with physical or mental health problems and provide a guide to intervention and follow-up evaluation. In our study, the caregivers experienced lower QOL levels, where the most affected was psychological domain and the least was physical domain. We found a statistically significant difference in the mean WHOQOL scores according to patient's diagnosis and psychosocial background. Caregiver's elderly age significantly affected most of the domains of WHOQOL. Caregiver's kinship, patient diagnosis, average caregiving hours, and caregiving years were other factors that affected the QOL.
The high mean QOL for the physical domain in our study was similar to a study conducted in Iran. Physical domain implied that our study population had good activities of daily living, adequate energy and mobility, less pain and discomfort, sufficient sleep and rest, and good work capacity. A low psychological domain score in our study reflected negative attitude toward life and reduced self-esteem. This might be due to the social stigma associated with the mental health disorders. Our results confirm to a previous study conducted in Taiwan. Older caregiver age group of 40–60 years, increase in caregiving hours (5–10 h) and patients having psychotic mental illness when compared to other types of mental illnesses could explain nearly 40% variability in psychological domain [Table 3]. It is interesting to note from previous studies that family caregivers of patients with psychotic illness perceived poor QOL compared to the general population.
It was found that caregiver's age was inversely proportional to QOL [Figure 1] which might be attributed to their own age related morbidities and financial dependence. At the expense of their health and other co-morbidities, older caregivers have to provide emotional support, assist them with daily living, and advocate for various services. The results are similar to several studies that found older caregivers having a higher care burden hence poorer QOL., Older caregiver age group (40–60 years) explained the variability in the majority of the domains (psychological, social and environmental) [Table 3]. Low QOL was significantly associated more with the parents than the spouses or other relatives [Figure 2]. The review of available evidence by Kalra et al. also found the parents of mental health patients experienced more burdens in comparison to spouses. Social support and particularly the emotional support from a close relationship with parent or spouse is one important protective factor for mental health problems. This support system gets affected adversely resulting in poor QOL.
Daily average caregiving hours were inversely proportional to WHOQOL Score [Figure 3], which is related to increased caregiving burden and high contact with the patient in their daily life. It has been demonstrated that both longer caregiving years and longer daily caregiving hours can increase care burden., Caregiver with higher education status have better QOL [Figure 4] because of better knowledge about their relative's psychiatric illness and better coping strategies. The general trend is that the caregiver burden is higher when the caregiver is female, less educated and from a low socioeconomic background.,
- This was a cross-sectional study that precludes drawing causal inferences. Future studies may focus on the longitudinal relationship between caregivers' and patients' characteristics and QOL
- Our study was conducted in psychiatric OPD of a tertiary care hospital in urban India. Hence, the findings have limited extrapolation to only urban tertiary care outpatient settings in India.
| Conclusion|| |
Caregivers form an integral part of the psychosocial management of mentally ill patients. Studies measuring QOL among caregivers can help initiate early intervention among the vulnerable caregivers. This would also help the mental health professionals to identify those caregivers, who are at high risk for physical and emotional problems. Thus by increasing the awareness among the professional health care workers, they can be more sensitive to the stress and burden experienced by the families. With the help of culturally integrated rehabilitation programs/day care centers, health workers can provide better health services and better psycho-education to the caregivers. This can improve their QOL, which would enhance the level of caregiving and thereby improving the QOL of mentally ill patients.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Kaushik P, Bhatia MS. Burden and quality of life in spouses of patients with schizophrenia and bipolar disorder. Delhi Psychiatry Journal 2013;16:83-9.
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 Psychiatr 2013;6:380-8.
Dani MM, Thienhaus OJ. Characteristics of patients with schizophrenia in two cities in the U.S. and India. Psychiatr Serv 1996;47:300-1.
Thara R, Kamath S, Kumar S. Women with schizophrenia and broken marriages – Doubly disadvantaged? Part II: Family perspective. Int J Soc Psychiatry 2003;49:233-40.
WHO. A Glossary of Terms for Community Health Care and Services. WHO Centre for Health Development. Contract No.: 5.5. Geneva: WHO; 2005.
Schene AH, van Wijngaarden B, Koeter MW. Family caregiving in schizophrenia: Domains and distress. Schizophr Bull 1998;24:609-18.
Talwar P, Matheiken ST. Caregivers in schizophrenia: A cross cultural perspective. Indian J Psychol Med 2010;32:29-33.
Cleary M, Deacon M, Jackson D, Andrew S, Wai-chi Chan S. Stigma in mental illness: A continuing concern. Contemp Nurse 2012;41:48-50.
Group TW. The World Health Organization quality of life assessment (WHOQOL): Development and general psychometric properties. Soc Sci Med 1998;46:1569-85.
Zendjidjian X, Richieri R, Adida M, Limousin S, Gaubert N, Parola N, et al
. Quality of life among caregivers of individuals with affective disorders. J Affect Disord 2012;136:660-5.
Agrawal GJ. Burden among caregivers of mentally-Ill patients: A rural community-based study. Int J Res Dev Health 2013;1:29-34.
Sales E. Family burden and quality of life. Qual Life Res 2003;12 Suppl 1:33-41.
Schulz R, Beach SR. Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. JAMA 1999;282:2215-9.
Basheer S, Niazi RS, Minhas FA, Najam N. Depression and anxiety in the caregivers of mentally ill patients. Depress Anxiety 2005;2:27.
Wong DF, Lam AY, Chan SK, Chan SF. Quality of life of caregivers with relatives suffering from mental illness in Hong Kong: Roles of caregiver characteristics, caregiving burdens, and satisfaction with psychiatric services. Health Qual Life Outcomes 2012;10:15.
Gholami A, Jahromi LM, Zarei E, Dehghan A. Application of WHOQOL-BREF in measuring quality of life in health-care staff. Int J Prev Med 2013;4:809-17.
Lin JD, Hu J, Yen CF, Hsu SW, Lin LP, Loh CH, et al
. Quality of life in caregivers of children and adolescents with intellectual disabilities: Use of WHOQOL-BREF survey. Res Dev Disabil 2009;30:1448-58.
Winahyu KM, Hemchayat M, Charoensuk S. The relationships between characteristics of caregivers and quality of life among family caregivers of patients with schizophrenia in Indonesia. International Proceedings of Social and Behavioral Sciences 2014;2:1-7.
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.
Chien WT, Chan SW, Morrissey J. The perceived burden among Chinese family caregivers of people with schizophrenia. J Clin Nurs 2007;16:1151-61.
Hadrys T, Adamowski T, Kiejna A. Mental disorder in Polish families: Is diagnosis a predictor of caregiver's burden? Soc Psychiatry Psychiatr Epidemiol 2011;46:363-72.
Kalra H, Kamath P, Trivedi JK, Janca A. Caregiver burden in anxiety disorders. Curr Opin Psychiatry 2008;21:70-3.
Winefield HR, Harvey EJ. Needs of family caregivers in chronic schizophrenia. Schizophr Bull 1994;20:557-66.
Magliano L, Fiorillo A, De Rosa C, Malangone C, Maj M, National Mental Health Project Working Group. Family burden in long-term diseases: A comparative study in schizophrenia vs. physical disorders. Soc Sci Med 2005;61:313-22.
Roychaudhuri J, Mondal D, Boral A, Bhattacharya D. Family burden among long term psychiatric patients. Indian J Psychiatry 1995;37:81-5.
Rammohan A, Rao K, Subbakrishna DK. Burden and coping in caregivers of persons with schizophrenia. Indian J Psychiatry 2002;44:220-7.
O'Brien M, Singleton N, Bumpstead R, Office for National Statistics LSSD. Psychiatric Morbidity Among Adults Living in Private Households, 2000. London (United Kingdom): The Stationery Office; 2001.
[Figure 1], [Figure 2], [Figure 3], [Figure 4]
[Table 1], [Table 2], [Table 3]
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