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Research Article | Volume 14 Issue: 3 (May-Jun, 2024) | Pages 879 - 882
Quality of Life among Caregivers in a Tertiary Hospital Context
 ,
1
Department of Psychiatry, Harry S. Truman Veterans Hospital, Columbia, Missouri, USA.
2
Department of Medicine, SVS Medical College, Mahbubnagar, Telangana, India.
Under a Creative Commons license
Open Access
PMID : 16359053
Received
April 9, 2024
Revised
April 25, 2024
Accepted
May 8, 2024
Published
June 12, 2024
Abstract

Introduction: Both bipolar disorder and schizophrenia are long-term mental health conditions that are debilitating and negatively impact the patients. They are classified as severe mental illnesses (SMI) because they meet the criteria for nonorganic psychosis with a long duration of illness or treatment and are often associated with disability. Materials and Methods: This cross-sectional study was conducted on 120 caregivers of patients with schizophrenia and mood disorders who were attending the psychiatric outpatient department (OPD) of a tertiary care Hospital in urban India for six months from January 2023 to December 2023. Results: Of the total sample of 120 (N), 50% (30) were caregivers of schizophrenia and 50% (60) were caregivers of patients with mood disorders. Of the total sample (120), 56.7% (68) were females, and 43.3% (52) were males. Of the total sample, 10% (12) were in the age group of 20-30 years, 43.3% (52) were in the age group of 31-40 years, 30% (36) were in the age group of 41-50 years, and 16.6% (20) were in the age group of 51-60 years. The mean age of the study population was 43.80 ± 5.39 (range: 20-60). Of the total sample (120), 45% (54) were parents, 35% (42) were spouses, and the others 20% (24). Of the total sample (120), 71.7% (86) were employed, and 28.3% (34) were unemployed. Of thetotal sample (120), 61.7% (74) were literate, and 38.3% (46) were illiterate. Of the total sample (120), 88.3% (106) were married, and 11.7% (14) were unmarried. Conclusion: Assessing the quality of life for caregivers enables the initiation of early support measures for those at risk. Enhanced health services and psychoeducational resources can lead to an improvement in caregivers' well-being, subsequently improving their caregiving capabilities and positively impacting the lives of individuals with mental health conditions.

Keywords
INTRODUCTION

Both bipolar disorder and schizophrenia are long-term mental health conditions that are debilitating and negatively impact the patients. They are classified as severe mental illnesses (SMI) because they meet the criteria for non-organic psychosis with a long duration of illness or treatment and are often associated with disability1.

Schizophrenia is a significant mental health condition, with reports indicating a prevalence of 2-3 cases per 1,000 individuals in India. The challenges it poses to patients, their families, and society at large mirror those seen globally. However, the difficulties in providing adequate care are exacerbated in India due to limited resources, economic hardships, educational deficits, and insufficient healthcare infrastructure2. It is essential to conduct a thorough evaluation of both the patient and their caregiver. Such evaluations should delve into the caregiver's comprehension of the illness, their perspectives and beliefs about treatment, the personal toll of the illness, and their available support systems and resources3.

Bipolar disorder is characterized by mood episodes, i.e., mood elevation and increased goal-directed activity on some occasions and low mood and decreased activity on others. Due to the recurrent nature of bipolar disorder, each episode, as well as the fear of future episodes, exposes the family members to stressful situations4.

The prevalence of schizophrenia is 0.4 percent currently and 1.4 percent lifetime experience and bipolar affective disorder is 0.3 percent currently and 0.5 percent lifetime experience in the Indian population as per the survey conducted by NMHS in the year 2015 to 20165.

Most studies have evaluated the QOL of mentally ill patients, but there are only a few that have evaluated the QOL of apparently healthy caregivers of mentally ill patients. This study aimed to explore the QOL and its associations with specific psychological and sociodemographic factors among caregivers of mentally ill patients in a tertiary care hospital in urban India.

MATERIAL AND METHODS:

This cross-sectional study was conducted on 120 caregivers of patients with schizophrenia and mood disorders who were attending the psychiatric outpatient department (OPD) of a tertiary care Department of General Medicine, Eeshan Hospital, Hyderabad, Telangana, India, in urban India for six months from January 2023 to December 2023.

Inclusion Criteria: The study population consisted of caregivers of patients with schizophrenia and mood disorders (diagnoses were based on the 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 significant criteria and one of the minor criteria. A total sample of 120 caregivers who met the above criteria was included in the study.

  • Both males and females, who are the patient's caregivers, were included in the study.
  • The significant criteria included living with the patient three days a week for at least six months during the previous year and being closely involved in the patient's daily living activities.
  • The minor criteria included financial or business assistance, providing emotional support, daily supervision, and personal care, arranging doctor's appointments (making calls/transportation/explanations/translations), or involvement in medical management.

Exclusion Criteria:

Individuals with any illness that affects the quality of life.

Substance dependence.

Study Tool: After obtaining their informed consent, data was collected. The quality of life was assessed using the self-administered/interviewer-assisted (in case of insufficient ability) WHOQOL-BREF questionnaire. The Quality-of-Life questionnaire (WHOQOL-BREF) measured the primary study outcome.

Statistical Analysis: The Statistical Package for the Social Sciences (SPSS) version 23 was used for data analysis. An independent sample t-test was used to compare the two groups' mean quality of life scores. An analysis of variance (ANOVA) test was used to examine the effect of caregiving years and their relation with the patient on quality of life[.

RESULTS:

Of the total sample of 120 (N), 50% (60) were caregivers of patients with mood disorders, and 50% (60) were caregivers of schizophrenia. Of the total sample (120), 56.7% (68) were females, and 43.3% (52) were males. Of the total sample, 10% (12) were in the age group of 20-30 years, 43.3% (52) were in the age group of 31-40 years, 30% (36) were in the age group of 41-50 years, and 16.6% (20) were in the age group of 51-60 years.

The mean age of the study population was 43.80 ± 5.39 (range: 20-60). Of the total sample (120), 45% (54) were parents, 35% (42) were spouses, and the others 20% (24). Of the total sample (120), 71.7% (86) were employed, and 28.3% (34) were unemployed. Of the total sample (120), 61.7% (74) were literate, and 38.3% (46) were illiterate. Of the total sample (120), 88.3% (106) were married, and 11.7% (14) were unmarried.

Of the total sample (120), 10% (12) of the caregivers had been providing care for less than one year, 56.7% (68) of the caregivers had been providing care for 1-5 years, 26.7% (32) of the caregivers had been providing care for 6-10 years, and 6.6% (8) of the caregivers had been providing care for more than ten years.

 

 

Characteristics

Number (N=120)

Percentage

 

Age

20-30 years

12

10

31-40 years

52

43.3

41-50 years

36

30

51-60 years

20

16.6

Gender

Male

52

43.3

Female

68

56.7

 

Caregiving years

<1 year

12

10

1-5 years

68

56.7

6-10 years

32

26.7

>10 years

8

6.6

Diagnosis

Schizophrenia

60

50

Mood disorders

60

50

 

Region

Rural

72

60

Urban

44

36.7

Tribal

4

3.3

Table 1: Characteristics of Caregivers of Patients with Schizophrenia and Mood Disorder

Patient Diagnosis

N

Mean ± SD

T-Value

P Value

Schizophrenia

60

79.30 ± 3.20

0.0432

0.013

Mood disorders

60

82.30 ± 5.40

0.066

Table 2: Mean Quality of Life Score of Caregivers of Patients with Schizophrenia and Mood Disorder

WHOQOL-BREF Scale

Mean QOL Scores

Physical health

83.01

Psychological

68.36

Social relationship

67.21

Environment

78.03

Table 3: Mean QOL Scores of Each Domain of the WHOQOL-BREF Scale

DISCUSSION

Quality of life as a measurement helps identify groups with physical or mental health problems, provide a follow-up evaluation and guide intervention. In this study, the caregivers experienced lower quality of life, with the psychological domain being the most affected and the physical domain being the least affected. The caregivers' elderly age significantly affected most of the domains of WHOQOL.

Other factors affecting QOL were caregiver kinship, patient diagnosis, average caregiving hours, and years. In this study, the mean quality of life score of caregivers of patients with schizophrenia and mood disorder was 79.3 and 82.3, respectively. We found a statistically significant difference in the mean WHOQOL scores according to the patient's diagnosis, i.e., the quality of life was better in caregivers of patients with a mood disorder compared to those with schizophrenia.

DISCUSSION

Quality of life as a measurement helps identify groups with physical or mental health problems, provide a follow-up evaluation and guide intervention. In this study, the caregivers experienced lower quality of life, with the psychological domain being the most affected and the physical domain being the least affected. The caregivers' elderly age significantly affected most of the domains of WHOQOL.

Other factors affecting QOL were caregiver kinship, patient diagnosis, average caregiving hours, and years. In this study, the mean quality of life score of caregivers of patients with schizophrenia and mood disorder was 79.3 and 82.3, respectively. We found a statistically significant difference in the mean WHOQOL scores according to the patient's diagnosis, i.e., the quality of life was better in caregivers of patients with a mood disorder compared to those with schizophrenia.

The high mean quality of life for the physical domain in our study was similar to that of Gholami A. et al. The physical domain implied that our study population had suitable daily activities, adequate energy and mobility, less pain and discomfort, sufficient sleep and rest, and good work capacity. Our study's low psychological domain score reflected a negative attitude toward life and reduced self-esteem. This might be due to the social stigma associated with mental health disorders. Our results confirm a previous study conducted by Lin JD et al. It is interesting to note from earlier studies that family caregivers of patients with psychotic illness perceived poor quality of life compared to the general population. In a study done by KATE N et al., caregiving burden, especially tension, is associated with the use of maladaptive coping strategies, poor quality of life, and a higher level of psychological morbidity in caregivers. In a study done by Thara et al., it was found that Indian women with schizophrenia and broken marriages were disabled and stigmatized not only by psychiatric illness but also by social attitudes toward divorce and marital separation. Most families in India expressed intense distress and were especially concerned about the security of these women and their long-term future. Caring for these women's children was an additional problem in the face of a total lack of financial support from the husbands.

In a study done by Zendjidjian X et al., it was found that, of all other caregivers in a family, mothers were generally the primary caregivers and reported a lower quality of life than other types of informal caregivers. As mothers are responsible for most aspects of the patient's daily care, they may experience a higher burden. It was found that the caregiver's age was inversely proportional to the quality of life, which might be attributed to their age-related morbidities and financial dependence. At the expense of their health and other comorbidities, older caregivers must provide emotional support, assist them with daily living, and advocate for various services. The results were similar to several studies that found older caregivers have a higher care burden and, hence, a poorer quality of life. Caregivers with a higher education status had a better quality of life because of better knowledge about their relative's psychiatric illness and better coping strategies.

CONCLUSION

Measuring the quality of life among caregivers can help initiate early intervention among vulnerable caregivers. By providing better health services and psychoeducation, the quality of life of caregivers can be improved, which enhances the level of caregiving and also helps in enhancing the quality of life of mentally ill patients.

REFERENCES
  1. Lima-Rodríguez JS, de Medina-Moragas AJ, Fernández-Fernández MJ, Lima-Serrano M. Factors associated with quality of life in relatives of adults with serious mental illness: A systematic review. Community mental health journal. 2022 Feb 10:1-20.
  2. Leonhardt BL, Huling K, Hamm JA, Roe D, Hasson-Ohayon I, McLeod HJ, Lysaker PH. Recovery and serious mental illness: a review of current clinical and research paradigms and future directions. Expert Review of Neurotherapeutics. 2017 Nov 2;17(11):1117-30.
  3. Patel KR, Cherian J, Gohil K, Atkinson D.Schizophrenia: overview and treatment options. Pharmacy and Therapeutics. 2014 Sep;39(9):638.
  4. Mestdagh A, Hansen B. Stigma in patients with schizophrenia receiving community mental health care: a review of qualitative studies. Social psychiatry and psychiatric epidemiology. 2014 Jan;49(1):79-87.
  5. Koschorke M, Padmavati R, Kumar S, Cohen A,Weiss HA, Chatterjee S, Pereira J, Naik S, John S, Dabholkar H, Balaji M. Experiences of stigma and discrimination faced by family caregivers of people with schizophrenia in India. Social Science and Medicine. 2017 Apr 1;178:66-7.
  6. International Classification of Diseases, Eleventh Revision (ICD-11), World Health Organization (WHO) 2019/2021 https://icd.who.int/browse11.
  7. Mohamed A, Mohsen N, Morkos B, Naguib R.Quality of life among caregivers of patients with bipolar disorder. Egyptian Journal of Psychiatry. 2020 Sep 1;41(3):177. 10.21608/EJHC.2020.235897.
  8. Reinares M, Vieta E, Colom F, Martinez-Aran A,Torrent C, Comes M, Goikolea JM, Benabarre A,Daban C, Sánchez-Moreno J. What matters to bipolar patients’ caregivers: sources of family burden. Journal of affective disorders. 2006 Aug 1;94(1-3):157-63. https://doi.org/10.1016/j.jad.2006.04.022.
  9. National Mental Health Survey of India,2015-16:Mental Health Systems. Bengaluru, National Institute of Mental Health and Neurosciences, NIMHANS Publication No. 130, 201.
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