Caregiver burden in the families of the patients suffering from bipolar affective disorder: A cross-sectional study in central India

Abstract

Background:

Caregivers of patients with bipolar affective disorder (BPAD) experience significant burdens.

Aim:

Understanding the factors influencing caregiver burden is essential for developing effective, culturally relevant interventions.

Materials and Methods:

This cross-sectional study assessed the caregiving burden among 120 primary caregivers of BPAD patients attending the Psychiatry Outpatient Department at a tertiary care hospital in Central India. The Burden Assessment Schedule (BAS) and Family Attitude Scale (FAS) were used to measure caregiver burden and expressed emotions (EE). Pearson’s correlation coefficient was applied to examine associations between caregiver burden, demographic factors, caregiving duration, and EE.

Results:

Most caregivers were male (60%) and married (96.7%), with a mean age of 40.76 ± 13.9 years and an average caregiving duration of 17.43 ± 9 years. The mean BAS score was 82.38 ± 7.2, indicating a high caregiving burden. BAS scores correlated significantly with caregiver age (r = 0.311, P = 0.001) and years living with the patient (r = 0.210, P = 0.022). The mean FAS score was 67.68 ± 7.4, with significant correlations observed between FAS scores and caregiver age (r = 0.404, P < 0.001) and years of cohabitation (r = 0.239, P = 0.008). A strong positive correlation between BAS and FAS scores (r = 0.423, P < 0.001) highlighted the role of EE in exacerbating caregiver burden.

Conclusion:

Caregivers of BPAD patients face substantial burdens influenced by demographic factors, caregiving duration, and high levels of EE within families.

Caregivers of patients with bipolar affective disorder (BPAD) face significant challenges compared to those caring for individuals with other chronic illnesses. The burden of caregiving for BPAD is dynamic, encompassing physical, emotional, social, and financial strain. Caregivers often manage patients’ medical needs, provide emotional support, and make substantial personal sacrifices, further compounding their distress. These challenges are particularly pronounced due to the episodic and recurrent nature of BPAD, which disrupts family dynamics and caregiver well-being.[1,2,3] “Caregiver burden” reflects both objective impacts, such as disruptions to daily routines, social isolation, and financial strain, and subjective impacts, including emotional strain, guilt, and anxiety. Studies highlight that factors influencing caregiver burden include illness severity, caregiving duration, caregiver demographics, coping mechanisms,[4,5,6] socioeconomic status, and caregiver age.[7] Financial strain and limited social support are major challenges for caregivers in India.[8] Expressed emotions (EE), a measure of hostility, criticism, and emotional over-involvement within families, plays a critical role in caregiver burden and patient relapse. High EE correlates with greater caregiver distress and poor patient outcomes. Indian studies have reported that elevated EE levels among caregivers of BPAD patients exacerbate emotional strain and increase relapse rates.[9,10]

The cultural emphasis on family caregiving in India amplifies stress due to societal expectations and limited resources. Studies such as those by Mazumdar et al. and Gupta et al. have highlighted that caregiving norms in Indian families often add to emotional strain and complicate caregiving dynamics.[11,12] Recent international studies further emphasize the importance of addressing caregiver burden through culturally sensitive interventions and tailored family-based care models.[13] This study aims to evaluate caregiver burden among primary caregivers of BPAD patients in Central India, examine the role of EE, and identify demographic factors contributing to caregiver distress.

MATERIALS AND METHODS

Study design and setting

This cross-sectional study was conducted among primary caregivers of patients diagnosed with BPAD attending the Psychiatry Outpatient Department at a tertiary care hospital in Central India. Patients were diagnosed based on ICD-10 criteria.

Inclusion criteria

• Caregivers aged 18 years or older.

• Caregivers living with the patient for at least 1 year.

• Caregivers actively involved in the care of the patient without receiving wages for caregiving.

Exclusion criteria

• Caregivers with organic or psychiatric disorders that could impair cognitive functioning.

• Caregivers unwilling to participate in the study.

Sample size calculation

The sample size (n) was calculated using the prevalence formula:

n = z².p. (1-p)/d²

Where:

• Z = 1.96Z = 1.96 (95% confidence level),

• P = 0.8P = 0.8 (80% hospital-based prevalence of caregiver burden from Indian studies),

• d = 0.07d = 0.07 (margin of error).

Substituting values:

n = (1.96)². 0.8. (1-0.8)/(0.07)²

The calculated sample size was 125, but for feasibility, the study included 120 caregivers while maintaining statistical power.

Duration of the study

The study was conducted over 6 months, from February 2024 to July 2024.

Data collection tools

1. Burden Assessment Schedule (BAS): A 40-item scale measuring caregiving burden across patient behavior, financial strain, and social relations domains. Items were scored on a 3-point scale, with higher scores indicating greater burden.[14]

2. Family Attitude Scale (FAS): A 30-item self-report measure assessing EE, including criticism and hostility. Higher scores reflected greater levels of EE.[15]

Data analysis

Data were analyzed using SPSS version 26. Descriptive statistics were used to summarize demographic characteristics, and Pearson’s correlation coefficient was applied to examine relationships between caregiver burden, EE, and caregiving-related factors. Statistical significance was set at P < 0.05.

Ethical considerations

Ethical clearance was obtained from the Institutional Ethics Committee of MGM Medical College, Indore, under letter number EC/MGM/Feb-24/30 dated February 17, 2024. Written informed consent was obtained from all participants.

RESULTS

The study primarily involved male patients (70.8%), with the majority being married (58.3%) and having completed secondary education (43.3%). Most caregivers were aged 21–40 years, predominantly male (60.0%), and married (96.7%). Other demographic characteristics are given in Table 1.

Table 1.

Sociodemographic data of caregivers and patients

Variables	Caregivers (n=120)		Patients (n=120)
	n	%	n	%
Age distribution in years
<20	2	1.7	2	1.7
21–30	36	30	54	45
31–40	29	24.2	48	40
41–50	14	11.7	10	8.3
51–60	27	22.5	6	5
Gender
Male	72	60	85	70.8
Female	48	40	35	29.2
Marital status
Married	116	96.7	48	40
Unmarried	4	3.3	70	58.3
Separated	-	-	1	0.8
Divorced	-	-	1	0.8
Education
No formal education	24	20	10	8.3
Primary	19	15.8	19	15.8
Secondary	47	39.2	52	43.3
Higher Secondary	22	18.3	-	-
Graduate	8	6.7	22	18.3
Occupation
Unemployed	31	25.8
Unskilled	33	27.5
Semi-Skilled	10	8.3
Skilled	13	10.8
Clerical/Shop owner/Farmer	33	27.5
Socioeconomic status
Upper	0	0
Upper middle	17	14.2
Lower middle	53	44.2
Upper Lower	16	13.3
Lower	34	28.3
Relationship with patient
Father	28	23.3
Mother	20	16.7
Spouse	41	34.2
Others (siblings, in-laws)	31	25.8

Caregivers had an average age of 40.76 ± 13.9 years, had lived with the patient for an average of 17.43 ± 9 years, and spent 8.78 ± 2.9 hours per day with the patient. The mean BAS score was 82.38 ± 7.2, indicating a high caregiving burden. The mean FAS score was 67.68 ± 7.4, suggesting elevated EE [Table 2]. Pearson correlation analysis showed a significant positive correlation between BAS scores, caregiver age, and years living with the patient. Similarly, FAS scores showed a significant positive correlation with caregiver age and years living with the patient [Table 3].

Table 2.

Characteristics of caregiver

Variable	Mean	Standard deviation	Range (minimum–maximum)
Age	40.76	13.974	19–70
Time spent with the patient in the same house (years)	17.43	9.079	2–48
Time spent with patient during the day (hours)	8.78	2.920	2–18
Family Attitude Scale (FAS) score	67.68	7.496	53–78
Burden Assessment scale (BAS) score	82.38	7.287	63–91

Table 3.

Correlation of BAS and FAS with caregiver characteristics

Variable	Correlation coefficient	P
BAS and age of caregiver	0.311	<0.001
BAS and time spent with the patient in the same house (years)	0.210	<0.022
BAS and time spent with patient during the day (hours)	−0.23	>0.800
FAS and age of caregiver	0.404	<0.000
FAS and time spent with the patient in the same house (years)	0.239	<0.008
FAS and time spent with patient during the day (hours)	−0.006	>0.951

The average duration of illness was 6.30 ± 4.22 years, with patients having an average of 1.76 ± 1.73 hospitalizations, each lasting an average of 12.78 ± 9.87 days. On average, patients experienced 2.63 ± 2.21 manic episodes, 0.49 ± 0.65 depressive episodes, and infrequent suicide or homicide attempts [Table 4].

Table 4.

Characteristics of patients

Variable	Mean	Standard deviation	Range
Total duration of illness	6.30	4.224	24
Number of hospitalization	1.76	1.734	8
Time spent in hospital (days)	12.78	9.867	48
Number of episodes of mania	2.63	2.211	15
Number of episodes of depression	0.49	0.648	3
Number of attempts of suicide	0.12	0.322	1
Number of attempts of homicide	0.03	0.203	2

BAS scores were significantly correlated with patient age, illness duration, number of hospitalizations, and hospitalization days. Similarly, FAS scores were significantly associated with the patient’s age, illness duration, hospitalizations, and hospitalization days. BAS and FAS were also significantly correlated, indicating a strong association between caregiver burden and EE [Table 5].

Table 5.

Correlation of BAS and FAS with patient characteristics and between each other

Variables	Correlation coefficient	P
BAS and age of patient	0.311	0.001
BAS and total duration of illness	0.240	0.008
BAS and number of hospitalization	0.214	0.019
BAS and time spent in hospital (days)	0.212	0.020
FAS and age of the patient	0.404	0.000
FAS and total duration of illness	0.601	0.001
FAS and number of hospitalization	0.433	0.001
FAS and time spent in hospital (days)	0.306	0.002
FAS and BAS	0.433	0.000

DISCUSSION

This study highlights the significant burden experienced by caregivers of patients with BPAD, as evidenced by high BAS scores. The findings align with previous research, both domestic and international, showing that caregiving in BPAD is associated with substantial physical, emotional, and financial strain.[3,6] Caregivers frequently encounter high levels of stress and burden due to the unpredictable nature of BPAD and the demands of managing the patient’s condition.[13] The correlation between caregiver burden and caregiver age suggests that older caregivers face more challenges due to declining health and prolonged caregiving responsibilities. The association between years spent living with the patient and burden underscores the cumulative impact of long-term caregiving.[2] This observation is consistent with findings from Indian studies that highlight the need for targeted interventions for older caregivers, especially in resource-limited settings.[7]

Elevated FAS scores indicate high levels of EE, such as criticism and hostility, significantly correlating with caregiver burden. This reflects the role of family dynamics in exacerbating caregiver stress and influencing patient outcomes.[9,14] The strong association between BAS and FAS scores emphasizes the interplay between caregiver burden and the family’s emotional climate. Cultural factors in India, such as joint family systems, often intensify these emotional dynamics, adding unique dimensions to caregiving experiences.[8,15] The predominance of male caregivers in this study reflects caregiving norms in India, where men often assume primary caregiving roles. This contrasts with Western findings, where women predominantly fulfill caregiving roles.[8,12] Most caregivers belonged to lower-middle-class socioeconomic strata and had limited education, compounding the challenges of caregiving due to financial strain and limited access to resources.[7]

Culturally tailored interventions are essential to address these challenges. Psychoeducation programs should focus on managing high levels of EE within families. Incorporating accessible stress management tools, such as mindfulness-based interventions, can effectively reduce caregiver stress.[13,16] Additionally, financial support initiatives and respite care services are crucial to alleviate economic pressures and provide temporary relief for caregivers. Reducing caregiver burden may also enhance functional recovery in bipolar patients, as family support plays a key role in long-term outcomes.[17] Furthermore, high caregiver burden is linked to poorer clinical outcomes, emphasizing the need for family-focused interventions.[18]

Limitations

Its cross-sectional nature means that observed associations cannot imply causal relationships, and purposive sampling may not fully represent the broader population, limiting the generalizability of our findings. The sample size was relatively small, and a more extensive, community-based sample would provide more robust data for broader conclusions. We did not assess the impact of caregivers’ coping strategies on their perceived burden, which could influence our results. Cultural differences may also restrict the applicability of our findings beyond the specific context studied. Furthermore, our study’s absence of a control group limits our ability to attribute specific outcomes solely to caregivers of individuals with BPAD.

Future directions

Future research should focus on targeted interventions to reduce caregiver burden in BPAD, including psychoeducation and counseling tailored to older, female, uneducated, or unemployed caregivers. Longitudinal studies are needed to assess the long-term impact of caregiver burden and identify factors contributing to resilience and coping. Investigating social support networks and community resources and integrating technological solutions such as telehealth could offer continuous support for caregivers. Policymakers should use these findings to create supportive policies and programs addressing caregivers’ financial, emotional, and practical challenges.

CONCLUSION

This study highlights the significant burden experienced by caregivers of patients with BPAD. Factors such as the caregiver’s age, relationship with the patient, and the duration of caregiving play crucial roles in shaping this burden. The emotional climate within families, particularly the level of EE, substantially impacts both caregiver well-being and patient outcomes.

Authors’ contributions

MV: Study design, Definition of intellectual content, Literature search, Data acquisition, Data analysis, Statistical analysis, Manuscript preparation, Manuscript editing

KR.B: Study design, Critical Appraisal and Final approval of the version to be published.

PR: Study design, Critical Appraisal and Final approval of the version to be published

RG: Literature search, Data acquisition, Data analysis, Statistical analysis, Manuscript preparation, Manuscript editing

AS: Manuscript editing, data analysis and critical appraisal

Ethics statement

Ethical approval for this study was obtained from the Institutional Ethics Committee of MGM Medical College, Indore (Approval No: EC/MGM/Feb-24/30, dated February 17, 2024). Written informed consent was obtained from all participants prior to their inclusion in the study.

Data availability statement

The datasets generated and/or analyzed during the current study are available from the corresponding author upon reasonable request.

Consent for participation and publication

The informed consent was obtained from the participants with permission to publish the findings, and the identity of all the participants has been kept anonymous.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.