|Year : 2022 | Volume
| Issue : 1 | Page : 151-157
A cross-sectional study to assess the caregiver burden and the quality of life of caregivers of the patients suffering with psychiatric illness
Parul Gupta, Poonam Bharti, Manish Bathla, Angad Harshbir Singh, Leezu Bhusri
Department of Psychiatry, Maharishi Markandeshwar Institute of Medical Sciences and Research, Ambala, Haryana, India
|Date of Submission||09-Dec-2020|
|Date of Acceptance||11-Oct-2021|
|Date of Web Publication||20-May-2022|
Dr. Poonam Bharti
Guru Nanak Colony, Street Number 6, House Number 73, Opp Medical College, Faridkot, Punjab
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Background: The impairment due to the psychiatric disorders makes the sufferer unable to become independent, therefore require long term support and care by their relatives. About 32% of years lived with disability (YLD) and about 13% of disability adjusted life-years (DALYs) is found in mental illness. Aims and Objectives: The aims were to study the socio-demographic profile, the caregiver burden and quality of life of the caregivers of the patients with different psychiatric illness. Also, to compare the burden and quality of life among caregivers of different psychiatric groups. Materials and Methods: It is a cross sectional study in which 120 caregivers of patients with psychiatric illnesses were included; divided into four groups (30 each): Anxiety, psychotic, mood and substance use disorders. After the consent, Zarit burden interview, socio demographic profile and quality of life -10 scales were used to assess the objectives. Results: The results revealed that maximum caregivers were males, and spouses in relation with the patient. Most of them were married and educated. Maximum had mild to moderate level of burden (49.1%), followed by moderate to severe level of burden in about 22.5% caregivers. Significant association was seen with the burden level. But no significant association was seen with the quality of life. Conclusion: Caregivers of the psychiatric patients have to suffer a lot and may land up into the psychiatric symptoms themselves.
Keywords: Caregiver burden, disability, quality of life
|How to cite this article:|
Gupta P, Bharti P, Bathla M, Singh AH, Bhusri L. A cross-sectional study to assess the caregiver burden and the quality of life of caregivers of the patients suffering with psychiatric illness. Ind Psychiatry J 2022;31:151-7
|How to cite this URL:|
Gupta P, Bharti P, Bathla M, Singh AH, Bhusri L. A cross-sectional study to assess the caregiver burden and the quality of life of caregivers of the patients suffering with psychiatric illness. Ind Psychiatry J [serial online] 2022 [cited 2022 Jul 3];31:151-7. Available from: https://www.industrialpsychiatry.org/text.asp?2022/31/1/151/345608
A psychiatric disorder is a behavioral issue that leads to large amount of discomfort or impairment of personal performance. Some disorders may not require support, while others may involve disability and need support in the form of institutionalization. The impairment due to the psychiatric disorders makes the sufferer unable to become independent, therefore require long term support and care by their relatives. About 32% of years lived with disability (YLD) and about 13% of disability adjusted life-years is found in mental illness, equals to that of cardiovascular diseases. The WHO defines the quality of life (QOL) as an individual's awareness of their situation in life according to the conditions of the social and cultural systems in which they reside and in relation to their aims, environment, social relations, and other associated factors.
Caregiver is a person who provides support and aids, paid or unpaid, with day-to-day ventures to persons with a disorder, long-lasting illness, and in geriatric patient. This person may provide sympathetic or economic assistance and support with other activities. Caregiver can be formal; paid or associated with any organization or informal; unpaid help. Caregiver burden is defined as a psychological state that is composition of emotional pressure, social and physical work associated with care of the patients. It has also been defined as the social, financial, physical, or emotional speculation and other events in reaction to the adjustments and assistance given to the patient who is unable to maintain his or her self-care. Subjective burden of the caregiver includes emotional reaction, personal assessment, and recognized intensity. On the contrary, objective burden includes the physical workload or financial expenditure in view of providing support.
It is found that one person among four families is currently suffering from a psychiatric disorder. The families not only contribute bodily plus moral aid but also carry the adverse effects of dishonour and bias. In a family, if a family member suffers from a psychiatric illness lot of alteration and settlements have to be made by the family members to impose their role in their daily functions. Maximum time of the caregiver is consumed in taking care of the psychologically disabled patient, leading to social and economic hardships. Global burden of disease 2000 data show that neuropsychiatric disorders came out to be 30.8% of all YLDs. In fact, depression leads to maximum impairment, coming out to be 12% of all. Out of all psychiatric disorders, 6 were among top 20 sources of disability (YLDs) in the world, namely depression, alcohol abuse, bipolar disorder, schizophrenia, dementias, and headache.
Taking into account the discrepancy in the caregiving circumstances, there may be some positive features of a caregiver. For example, many caregivers may encounter a sense of self-efficiency or a stronger bond with family members, while going through such conditions together.
The psychosocial, genetic, and environmental factors play an important role in the etiology of the psychiatric disorder. As the maximum time of the patient is spent with the family, the caregivers have to manage their own as well as patient's disability which affects their QOL. Caregivers can provide a better environment and support system to the patient. Therefore, we need to educate the caregiver about the cause, course, and prognosis of the disorder. This will help in the better recovery and in avoiding the dropout rates of the patient's treatment. By evaluating the impact of burden on the caregivers, we can provide better psychosocial support to the patient which can help in refining the quality of services provided. Keeping these issues related to QOL and burden of family members in mind, the study was planned with the aims to study the sociodemographic profile, the caregiver burden, and QOL of the caregivers of the patients with different psychiatric illness. Furthermore, to compare the burden and QOL among caregivers of different psychiatric groups.
| Materials and Methods|| |
It is a cross-sectional study in which a total enumerative sampling technique was adopted. This study included 120 patients, divided into four groups, including 30 patients in each group; mood disorders, substance use disorders, anxiety disorders, and psychotic disorders.
The caregivers of patients falling in each group, fulfilling the diagnostic criteria of psychiatric disorder according to International Classification of Diseases-10 were included. Minimum duration of patient's illness should be 12 months. Age (of the attendant) should be more than 18 years. Attendants who gave informed consent and who are able to understand the language. The attendants with a past history of comorbid psychiatric disorder, not staying with the patient during the period of illness and were noncooperative and nonreliable were excluded from the study.
Method of data collection
The current study is a cross-sectional type that was conducted at the tertiary health-care center. All indoor patients were included. The patients were assessed by Dr. PG under the supervision of a consultant. All the patients were described about the essence of the study in every aspect. Ethical approval to conduct the study was obtained from the ethical committee before the data collection. Caregivers were interviewed separate from the patients, to facilitate free expression of their feelings. Each interview took between 20 and 30 min to complete. Caregiver was comforted about the confidentiality of the information obtained. A proper informed and written consent was taken beforehand.
Socio demographic data
This arranged format was used to assess the variables of sociodemographic profile such as sex, age, marital status, religion, income, locality, and type of family.
Quality of life-10
It measures the global QOL, ability and health of a subject; consists of 10 questions having Likert scoring, which ranges from great (1) to dying (5) after the calculation of score using an equation. It takes 10 min to administer this scale. The QOL10 measures global and social QoL constructs on par with WHO recommendations, and practitioners interested in these constructs may find the QOL10 a shorter and more robust tool than the WHOQOL-BREF. QOL10 is recommend for measuring the global QOL, self-rated physical and mental health, and self-rated ability for inexpensive, fast and reliable clinical quality assurance and for research in treatment-efficacy in biomedicine, complementary, and holistic medicine.
Zarit burden interview
It measures the burden, which assesses the impact of caregiving on caregivers including physical, psychological, social, and economic aspects. Caregivers were assessed by using the Zarit Burden Interview (ZBI). The ZBI is a 22-item questionnaire in which the caregivers report on their experiences of caregiving based on a 5-item Likert scale from 0 to 4. The word “relative” in the questions refers to person the caregiver is taking care of. Levels of burden are graded as: 0–20 = little or no burden, 21–40 = mild-to-moderate burden, 41–60 = moderate-to-severe burden, and 61–88 = severe burden. A permission was taken to use the scale.
Descriptive analysis was enumerated by using standard deviation and mean, for variables such as clinical parameters and sociodemographic profile. Data were assessed with reference to percentages and frequency for intermittent clinical records and sociodemographic data. Nonparametric tests (e.g. Chi-square etc.,) for comparing the variables distinct in nature will be employed. Kruskal Wallis and Mann–Whitney U test was used to find out the total burden score and QOL-10 scores of caregivers of different psychiatric groups and to compare the burden and QOL among caregivers of same.
| Results|| |
A total of 135 caregivers were recruited in the study. Among these, 10 did not give consent and 5 dropped out. This resulted in a total sample of 120 caregivers of patients. Among which, maximum belonged to the age group of <30 years. The mean age was 38.47 years. Maximum caregivers were males (66.6%) and 33.3% were females. About 82.5% were married followed by 14.1% who were single. Among relationship of caregivers with the patient, maximum were spouses (40.8%); husbands (24.1%) and wives (16.6%) of the patients. Most common occupation of the caregivers was skilled agricultural and fishery of 64 (39) followed by craft and related trade workers (33). About 40 caregivers were educated up to high school followed by 28; educated up to middle school. About 53.3% caregivers had the monthly income of Rs 6327–18949. About 76.6% were Hindu followed by Muslims (14.1%) and Sikhs (9.1%). Significant association was seen with age groups (P = 0.018), relationship with the patient (P-0.001) and sex (P-0.019) [Table 1].
It was observed that among the total population of 120 caregivers, maximum had mild-to-moderate level of burden (49.1%), followed by moderate-to-severe level of burden in about 22.5% caregivers. Severe burden was found most commonly in caregivers of substance users. The mean score was 32.82. Significant association was seen with the level of burden (P-0.010) [Table 2].
|Table 2: Total level of burden among caregivers of different psychiatric groups|
Click here to view
A significant P value was observed with the health parameter of the QOL-10. No other parameter showed any significant association [Table 3].
|Table 3: Percentage and P value of the total score of quality of life-10 of caregivers of different psychiatric groups|
Click here to view
No doubt the QOL was hampered more in the caregivers of psychotic and anxiety patients, but there was no significant association seen. A significant association was found with the total burden score among the caregivers of all the groups (P-0.000) along with the various sub divisions of the QOL including QOL (P-0.005), ability (P-0.019), health (P-0.010), and final score of QOL (P-0.005) using mann-whitney u test [Table 4]a.
While the different groups were compared, it was seen the caregivers of mood and psychotic patients showed a significant association with total burden score and also with QOL sub group. Furthermore, mood versus substance showed significant association with level of burden and with all the sub groups of the QOL-10. Similarly, significant association was seen in all the sub groups of QOL = 10 and burden level when caregivers of psychotic and anxiety patients were compared. Caregivers of anxiety and substance groups also showed significant P value in burden level and all the sub groups of QOL-10 using kruskal wallis test [Table 4]b.
| Discussion|| |
Family members play very important role in the management of the patients of psychiatric illness. They suffer a lot due to the behavior and the symptoms of the patients. We identified varying levels of caregiver burden among caregivers of the various psychiatric groups including mood, psychotic, anxiety, and substance use disorders.
In previous study, it has been observed that maximum number of the caretakers (34%) were of the age group 42–54 years not favoring our study. No specific reason was found but might be because of the regional variation. Almost half of the caregivers were married in the same research similar to our study.
Some of the previous studies supported our findings in which majority of the caregivers (52%) were males, also in another study, male caregivers were the maximum. Maximum were female (83.7%) in a previous study contradicting our findings. Out of total, 57 were females in a study by Yazici et al. not favoring our results. Since, North India is the area where females are supressed being more prone to stress-related disorders and causing a burden in the family members. This might be the reason for male caregivers being more in our study. Furthermore, males are the earning members and females being less educated do not accompany the patients alone.
In a previous study, about 40% of the caregivers were spouses of the patients in conformity to our study. In a study Molebatsi et al. it was found that majority of the study participants were mothers (72.2%), while in our study, maximum were spouses. Furthermore, in another study, maximum caregivers were parents, contradicting our findings. The reason of this difference can be that we included different disorders groups, whereas in the other studies mostly only one group was included as the sample. While in a study by Lasebikan and Ayinde, it was reported that parents (81.5%) were maximum of all followed by spouses (11.7%). In this study, caregivers of only schizophrenic patients were included, which are less likely married and hence accompanied by the parents.
Maximum caregivers had mean score of moderate-to-severe caregiver burden; (39.7%) in a previous observation differing our results. In another study, the mean score of ZBI came out to be 27.66 (mild to moderate) similar to our findings. About 49% of caregivers had high burden opposing our observation. Furthermore, supporting our results showing the mean score of ZBI was 24 lying in the group of mild-to-moderate burden level.
In a previous study by Shamsaei et al. the result showed that the majority of the population (41.8%) experienced moderate-to-severe burden and 7.6% experienced “no to low” burden, 23.5% “mild to moderate,” and 27.1% “severe” burden. The severity of burden is different because the sample population in the above study were patients with schizophrenia only, whereas we had four different groups of patients with different diagnosis. In another study, wives of both alcohol and heroin-dependent patients had moderate-to-high burden of caregiving (mean score of 38.1) opposing our findings, may be because of the difference in the diagnosis of the patients included. According to the study by Solanki et al., the burden and attitude of schizophrenic patients' caregivers were statistical significant (P ≤ 0.001) supporting our results which observed a significant association with the level of burden.
A significant association was seen with severe burden found in psychotic disorder group than the mood disorder group. This was supported by a study by Parija et al. in which there was a significantly higher total burden in caregivers of patients with schizophrenia (psychotic disorder) compared to bipolar affective disorder (BPAD) (mood disorder) and the P = 0.01. Another study by Bora and Das favoring our findings reported that the mean burden score for chronic schizophrenia group was 102.86 ± 27.04, whereas the mean BAS score for the BPAD group was 88.80 ± 22.31. Caregivers of chronic schizophrenia experienced significantly higher burden than the caregivers of BPAD (P = 0.03).
In our study, the analysis showed that all the variants had mean score of more than the half but out of all the maximum mean score was 3.22 (ranging from 1 to 5) and belonged to the mental health of the attendants, followed by the sexual functioning. While in a study by Basheer et al., the mean total score of QOL of the study population was 13.34 with the highest score in the physical domain, followed by social and environmental.
We did not study many other psychosocial variables, such as social support, disability, coping skills, involvement in patient care, accommodation and QOL of patients, etc., which could influence the perceived burden and QOL of caregivers. Duration of caregiving and the sociodemographic details of the patients, if included would have made the study more authentic. Future studies should try to address these issues.
| Conclusion|| |
With all the observations, we came to the conclusion that the relationship of the caregiver with the patient has a positive impact on the burden of the caregiver. The maximum burden level was mild-to-moderate level. A significant association was seen with the level of burden. The QOL of the caregivers was significantly affected because of the caregiving. Among all the four groups, the caregivers of the substance use disorder had the worst QOL.
Specify contributions that need acknowledging but do not justify authorship, such as general support by a departmental chair and acknowledgments of technical, financial and material support.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
“Mental Disorders”. Medline Plus. U.S. National Library of Medicine. 15 September 2014; Archived from the Original on 8 May 2016. Available from: https://medlineplus.gov/mentaldisorders.html
. [Last accessed on 2016 Jun 10].
Center for Psychiatric Rehabilitation What is Psychiatric Disability and Mental Illness? Archived 07-09-2018 at the Wayback Machine. Boston University Retrieved; 2012. Available from: http://www.bu.edu/cpr/reasaccom/whatis-psych.html
. [Last accessed on 2018 Sep].
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.
The WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med 1998;28:551-8.
Dillehay RC, Sandys MR. Caregivers for Alzheimer's patients: What we are learning from research. Int J Aging Hum Dev 1990;30:263-85.
Awad AG, Voruganti LN. The burden of schizophrenia on caregivers: A review. Pharmacoeconomics 2008;26:149-62.
World Health Organisation. WHO Centre for Health Development Ageing and Health Technical Report: A Glossary of Terms for Community Health Care and Services for Older Persons. Vol. 5. Japan: World Health Organisation; 2004. p. 3-111.
World Health Organisation. Programmes and projects; World health report. In: The World Health Report 2001 – Mental Health: New Understanding, New Hope. Switzerland: World Health Organisation; 2001. p. 1-8.
Wu MS, Hamblin R, Nadeau J, Simmons J, Smith A, Wilson M, et al.
Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment. Compr Psychiatry 2018;80:46-56.
World Health Organisation. The ICD-10 Classification of Mental and Behaviour Disorder: Clinical Descriptions and Diagnostics Guidelines. Geneva: World Health Organisation; 2002. p. 70-173.
Ventegodt S, Andersen NJ, Merrick J. QOL10 for clinical quality-assurance and research in treatment-efficacy: Ten key questions for measuring the global quality of life, self-rated physical and mental health, and self-rated social-, sexual-and working ability. J Altern Complement Med 2009;1:113-22.
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist 1980;20:649-55.
Agarwal M, Kushwaha A, Nischal A, Kar SK, Gupta B, Tripathi A, et al
. Burden of care in the caregivers of patients with anxiety disorders. Indian J Soc Psychiatry 2017;33:22-8. [Full text]
Nallapaneni NR, Yendluri P, Gupta CB, Racharla BN. A study of caregiver burden in bipolar affective disorder. J Evol Med Dent Sci 2015;4:8499-515.
Torres AR, Hoff NT, Padovani CR, Ramos-Cerqueira AT. Dimensional analysis of burden in family caregivers of patients with obsessive-compulsive disorder. Psychiatry Clin Neurosci 2012;66:432-41.
Molebatsi K, Ndetei DM, Opondo PR. Caregiver burden and correlates among caregivers of children and adolescents with psychiatric morbidity: A descriptive cross sectional study. J Child Adolesc Ment Health 2017;29:117-27.
Yazici E, Karabulut Ü, Yildiz M, Baskan Tekeş S, Inan E, Çakir U, et al.
Burden on caregivers of patients with schizophrenia and related factors. Noro Psikiyatr Ars 2016;53:96-101.
Magaña SM, Ramírez García JI, Hernández MG, Cortez R. Psychological distress among latino family caregivers of adults with schizophrenia: the roles of burden and stigma. Psychiatr Serv 2007;58:378-84.
Lasebikan VO, Ayinde OO. Family burden in caregivers of schizophrenia patients: Prevalence and socio-demographic correlates. Indian J Psychol Med 2013;35:60-6.
] [Full text]
Inogbo CF, Olotu SO, James BO, Nna EO. Burden of care amongst caregivers who are first degree relatives of patients with schizophrenia. Pan Afr Med J 2017;28:284.
Shamsaei F, Cheraghi F, Bashirian S. Burden on family caregivers caring for patients with schizophrenia. Iran J Psychiatry 2015;10:239-45.
Shekhawat BS, Jain S, Solanki HK. Caregiver burden on wives of substance-dependent husbands and its correlates at a tertiary care centre in Northern India. Indian J Public Health 2017;61:274-7.
] [Full text]
Solanki RK, Wasim M, Singh C. To study the burden and attitude of caregivers of schizophrenic patients. Indian J Res 2017;6:473-5.
Parija S, Yadav AK, Sreeraj VS, Patel AK, Yadav J. Burden and expressed emotion in caregivers of schizophrenia and bipolar affective disorder patients: A comparative study. MAMC J Med Sci 2018;4:68-74. [Full text]
Bora K, Das A. Family burden in caregivers of chronic schizophrenia and bipolar affective disorder – A comparative study. J Med Sci Clin Res 2017;5:30237-47.
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.
] [Full text]
[Table 1], [Table 2], [Table 3], [Table 4]