Research Article | | Peer-Reviewed

Burden of Caregivers of Patients with Physical Illnesses in SSH, BHU

Received: 26 May 2025     Accepted: 6 August 2025     Published: 27 August 2025
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Abstract

Background: Chronic physical illness places a heavy burden on both the sufferer and the caregiver. Thus, there is a psychological, physical, and economic burden on family members. Caring for physically ill patients places stress and burden on caregivers. Caregivers adopt different ways to cope with it. This study was conducted to assess the burden among caregivers of physically ill patients. Several studies have specifically focused on the quality of life of caregivers of patients with physical illness. Objectives: This study examined the burden of caregivers of patients with physical illness. Methods: A cross-sectional descriptive design was employed, and 50 participants from physical illness. The data was collected through Zarit Burden Interview and activities of daily living with Socio-demographic variables of both patient and caregivers. Data was analyzed by SPSS 20 statistical software. Results: There was no significant association between caregiver burden and Socio-demographic variables like gender, domicile, educational status, marital status, type of family, occupation, religion, duration of the stay with patient, employment status, family income status except debt due to illness with which association present the findings also showed that caregivers of patients with mental illness experiences more burden than caregiver of patients with physical illness. Conclusion: There is a need to provide social support for caregivers. The outcome of this study may help the health care providers in designing stress relief programme and better delivery system of cares for primary caregivers by proper specific framing and psycho-education programs.

Published in American Journal of Nursing Science (Volume 14, Issue 4)
DOI 10.11648/j.ajns.20251404.13
Page(s) 83-90
Creative Commons

This is an Open Access article, distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution and reproduction in any medium or format, provided the original work is properly cited.

Copyright

Copyright © The Author(s), 2025. Published by Science Publishing Group

Keywords

Physical Illness, Burden, Caregiver, Coping, Patient

1. Introduction
Caregiver burden has become a topic of interest for many researchers due to the deinstitutionalization of individuals with mental illness in the early 1970s. According to the World Health Organization , sixteen million deaths due to non-communicable diseases occur before the age of 70. According to the World Health Organization , non-communicable diseases or chronic diseases such as cancer, heart disease, respiratory disease and diabetes kill 38 million people worldwide every year. The burden experienced by an individual is typically due to increased demands in daily life, inadequate resources to balance the demand, or a combination of both. The consequences are mental and physical morbidity as well as coping and adaptation. A carer is a person who provides support and takes responsibility for the physical and emotional needs of another person who is unable to care for themselves . A carer is a person who has accepted the responsibility to care for a vulnerable relative. They are paid or unpaid members of a person's social network who help them with activities of daily living. The carer's role has come to be recognized as important both functionally and economically . Burden is the extent to which carers feel that their emotional and physical health, social life and financial situation are affected as a result of caring for their relatives. Caregiver burden refers to psychological pain, physical health issues, financial and social stress, impaired family relationships, feelings of frustration from caregiver tasks, and other negative consequences. Caregiver burden is the stress that is felt by caregivers due to a household care situation. It is the stress or burden borne by a person who cares for a seriously ill, disabled, or elderly family member . Caregiver burden and stress refers to the negative psychological, behavioral, and physical effects caused by the chronic stress and burden of caring for family members. According to Collins 18-47% of caregivers fall into depression. Family caregivers of patients with mental illness play the most important role in caring for patients and preventing them from being readmitted. Because of the need to provide long-term care, they cut down on leisure activities, are irregular at work, or even quit their job to take care of the patient. In India, about 20% of caregivers face a lot of stress, poor health, and disrupted family life. According to the BAS, severe burden was 40.9% and moderate burden was 59.1%. The highest burden was observed in the areas of physical and mental health, spouse-related, and external support. Some studies have noted multiple consequences of caregiver burden, such as mental health problems (e.g., depression, anxiety, stress, and burnout syndrome), deterioration in physical health (e.g., diabetes), and other negative effects (e.g., family dysfunction, social isolation, overuse of health services, and financial problems). Some evidence indicates significantly higher scores of overloads among caregivers of patients with mental illness compared to other conditions, such as another chronic illness. In India, women are twice as likely to become caregivers than men, even though men are more likely to be caregivers. Notably, the care giving burden was higher among working women than among homemakers .
Caregivers of patients face heavy burden, poor health, and disruption to family life, with literature suggesting growing concern about their ability to cope. Physical health professionals need to be more aware of and address family burden when caring for a patient with a physical illness. Burden can potentially harm the caregiver's physical health and lead to poor patient outcomes. Therefore, there is a need to investigate factors associated with caregiver burden as well as its prevalence, as this will help plan appropriate interventions. We wanted to assess burden among caregivers of physically ill patients.
2. Methods
This study was conducted at a tertiary hospital in Sir Sunder Lal Hospital, Banaras Hindu University, Varanasi. A cross-sectional descriptive design was adopted. 50 Participants included.
2.1. Eligibility Criteria
1) Caregiver of patient aged between 18 to 65 years diagnosed with Physically illness and receiving treatment in and out patient department.
2) Those caregivers who are willing to give consent and voluntarily participate in the study.
3) Patient who has been physically ill for six months and the caregiver staying with the patient for more than six months.
2.2. The Data Collection Tool was Partitioned in to Three Sections Described Below
1) Section A: Socio-demographic data collection sheet to collect information from the caregivers and patients respectively, such as age, sex, level of education and so forth.
2) Activities of daily living of patients: Independence in activities of daily living (ADL) was used to assess the functional status and independence of patients. This scale assesses the ability of the individual to perform six functions which include bathing, dressing, toileting, transferring, continence, and feeding. Clients are scored “yes “or “no” for independence in each of the six functions. The score of this ranges from 0-6 dependent, 7-12 partial dependent, and 13-18 independent.
3) Zarit burden interview: The Zarit Burden Interview (ZBI) is a widely used scale evaluating the stress experienced by the caregivers of the patients. It can be filled in by the caregiver or an interviewer and it consists of 22 statements identifying the impact of care on the life of the individual. Statements are responded to using a 4-point Likert scale. The range of possible scores on the scale is 0-88, with higher values indicating greater value.
2.3. Statistical Analysis
Categorical and quantitative variables were expressed as frequency (percentage) and mean ± SD, respectively. Chi square test was used to find the relationship between categorical variables. For all statistical interpretations, P < 0.05 was considered for statistical significance. Statistical analysis was performed using SPSS, version 20.0. Before the start of the study, ethical clearance and approval were obtained from the ethics and research committee of our institution.
Confidentiality was assured and verbal informed consent was obtained from each willing patient and his or her caregiver.
3. Results
A total of one hundred (100) caregivers participated in the study as shown in Table 1. More than half (56%) of them were male. Majority of the participants were from rural background (65 %), taken education up graduate & post graduate (53%). Most of the caregivers were Hindu (90%), about two-thirds (67%) were unskilled workers and (77%) were married while (53%) belong to nuclear family. Most of the caregivers were mothers (23%). They (84%) stay with the patient were more than 10 years. Helping people (96%) were only family members and half of the caregivers (52%) were not taken debt due to illness of family members. Half of the caregivers (53%) were employed and have income less than expenditure (51%).
Table 1. Sociodemographic variables of caregivers of patients with Physical illness. N= 100.

S.No

Socio-demographic Variables

Frequency (N)

Percentage (%)

1.

Gender

Male

56

56.0

Female

44

44.0

2.

Domicile

Rural

65

65.0

Urban

35

35.0

3.

Educational Status

Up to intermediate

47

47.0

Graduate and postgraduate

53

53.0

4.

Marital Status

Married

77

77.0

Unmarried

23

23.0

5.

Type of Family

Nuclear Family

53

53.0

Joint Family

47

47.0

6.

Occupation

Skilled Worker

33

33.0

Unskilled Worker

67

67.0

7.

Religion

Hindu

90

90.0

Muslim

10

10.0

8.

Relationship With Patient

Mother

23

23.0

Father

15

15.0

Brother

11

11.0

Sister

02

02.0

Husband

13

13.0

Wife

14

14.0

Daughter

04

04.0

Son

12

12.0

Others

06

06.0

9.

Duration of stay with the patient

More than 10 years

82

82.0

Less than 10 years

18

18.0

10.

Helping People

Family members

96

96.0

Neighbours

1

1.0

Religious people

1

1.0

Others

2

2.0

11.

Debt due to illness

Taken

48

48.0

Not taken

52

52.0

12.

Employment Status

Employed

53

53.0

Unemployed

47

47.0

13.

Family income status

Income less than expenditure

51

51.0

Income equal to or more than expenditure

49

49.0

Table 2: The mean age of the patients was 41.25 years. More than half of the patients (58%) were females, the educational status were up to intermediate and graduation level while almost two thirds (69%) were employed. More than half of the patients (56%) were living with partner. 30% suffered from neurological disorder, 28% Gastroenterological disorder, 12% of Cardiac disorders, and 22% Oncological disorder followed by 8% suffered from burn disorder.
Table 2. Sociodemographic variables of patient. N=100.

S.No

Variables

Frequency (N)

Percentage (%)

1.

Age

Up to 30 years

48

48.0

31-40 years

14

14.0

41-50 years

18

18.0

More than 50 years

20

20.0

2.

Gender

Male

58

58.0

Female

42

42.0

3.

Educational Status

Low

45

45.0

Average

26

26.0

High

29

29.0

4.

Marital Status

With partner

56

56.0

Without partner

44

44.0

5.

Occupation

Employed

69

69.0

unemployed

31

31.0

6.

Diagnosis Physical

Cardiac disorder

12

12.0

Neurological disorder

30

30.0

Oncology disorder

22

22.0

Gastroenterology disorder

28

28.0

Burn

08

08.0

Table 3. Activities of Daily Living (ADL) of patient.

S.No.

Activities of Daily Living

Frequency (N)

Percentage (%)

1.

Dependent

23

23.0

2.

Partial Dependent

23

23.0

3.

Independent

54

54.0

Figure 1. Pie graph showing level of caregiver burden in physical illness.
62% caregivers had Mild to Moderate level of burden; 22% Moderate to severe & 16% Little or no burden respectively.
Table 4. Association between caregiver burden and Socio-demographic variables.

Variables

Little or No burden

Mild to Moderate

Moderate to Severe

Total

χ2

P value

Gender

0.087

0.957 NS

Male

14

29

13

56

Female

10

23

11

44

Domicile

2.170

0.338 NS

Rural

15

37

13

65

Urban

9

15

11

35

Educational Status

2.482

0.289 NS

Up to intermediate

13

26

8

47

Graduate and Post graduate

11

26

16

53

Marital Status

0.118

0.943 NS

Married

18

40

19

77

Unmarried

6

12

5

23

Type of Family

1.672

0.434 NS

Single Family

14

29

10

53

Joint Family

10

23

14

47

Occupation

0.222

0.895 NS

Skilled Worker

7

18

8

33

Unskilled Worker

17

34

16

67

Religion

1.674

0.433 NS

Hindu

23

45

22

90

Muslim

1

7

2

10

Duration of stay with the patient

1.067

0.587 NS

More than 10 years

20

44

18

82

Less than 10 years

4

8

6

18

Debt due to illness

16.507

0.000 S

Taken

5

24

19

48

Not taken

19

28

5

52

Employment Status

0.334

0.846 NS

Employed

12

29

12

53

Unemployed

12

23

12

47

Family income status

8.707

0.013 NS

Income less than expenditure

8

25

18

51

Income equal to or more than expenditure

16

27

6

49

NS= Not significant, s = Significant
Table 4 showed that there is no association between caregiver burden and Sociodemographic variables like gender, domicile, educational status, marital status, type of family, occupation, religion, duration of stay with the patient, employment status and family income status did not statistically significantly differentiate caregivers who had burden of care from those who did not. There was significant association between caregiver burden and debts due to illness (Chi2 = 16.507 p = 0.00).
4. Discussion
This study examined the Burden of caregivers of patients with physical illnesses in SSH, BHU. Most caregivers were male, came from rural backgrounds, were educated up to graduate and postgraduate level, belonged to Hindu religion, worked in unskilled sector, and were married. Like the findings of some previous studies that were closely related to Jain et al. (2019).
Majority caregivers had single family, the duration of stay of caregivers with the patient was more than 10 years and Patient & their family members had not taken debt due to illness. Our study also revealed that the status of family income in most caregivers was less than expenditure and family members as a helping people. A comparative data related to these variables in the research under the which showed that the caregiver’s and patients income status was insufficient for expenses and also family members as a helping people which represents a burden of financial problems for the caregivers is particularly high.
Most patients were in the age group of up to 30 years, male. According to Chandran et al. the most of the patients were in the age group of up to 30-40 years, female.
Majority of the patient were with partner and having lower education which was very different from the research study conducted under Souza et al which showed majority of the patient without partner and having lower education.
Many patients in our study were employed which was similar the study conducted by Jane et al. . We also noted that 54% of patients were independent in performing ADL such as bathing, dressing, toileting, transferring, continence and feeding in contrast the study of Dhandapani et al. having 40% of the patient were dependent in performing ADL.
Most of the caregivers 62% reported mild to moderate burden, 11 (22%) had little or no burden and 8 (16%) had moderate to severe burden while providing care to patient with illness. Mathur et al. reported in their study that 52.5% caregivers had mild to moderate burden, 37.7% had moderate to severe burden and 9.8% had little or no burden while providing care to patient with illness. The finding of not significant association between caregiver burden and gender, domicile, educational status, marital status, type of family, occupation, religion, duration of stay with patient, employment status, debt due to illness and family income status, in this study supported by Walker, et al, and his colleagues.
Chi-square showed significant relationship only with debt due to illness and caregiver burden, as the highest caregiver burden was found in the category of mild to moderate burden. This is directly or indirectly associated with financial distress. A caregiver who takes debt due to illness suffers from mild to moderate burden as the caregiver faces financial distress during diagnosis and treatment.
5. Conclusion
This study concluded that caregivers of physically ill individuals suffer from mild to moderate levels of burden or stress. The highest burden was observed in neurological disorders. Caregivers need support and understanding. Healthcare workers working with caregivers of patients with chronic illness should systematically assess caregivers' coping styles and encourage the use of adaptive and problem-focused coping methods to improve care and patient-related outcomes. Therefore, there is a need to develop strategies that can help them such as providing them with a support structure and counseling services.
Abbreviations

WHO

World Health Organization

ZBI

Zarit Burden Interview

BAS

Burden Assessment Schedule

ADL

Activities of Daily Living

Acknowledgments
Authors thank all the respondents who participated in this study and my colleagues for their support in conducting this study.
I would like to express my sincere thanks to all the caregivers who trustfully participated in the study during data collection.
Declaration of Patient Consent
The authors certify that they have obtained all appropriate patient consent forms. In the forms, the patients' guardians have given their consent for their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published.
Limitations
The study population is limited and collected from one Government super-specialty hospital in BHU Varanasi.
Ethical Policy and Institutional Review Board Statement
The study has been approved by our Institute Ethical clearance Board: Ref No: Dean/2023/EC/6097.
Conflicts of Interest
The authors declare no conflicts of interest.
References
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[4] Dhandapani M, Gupta S, Dhandapani S, Kaur P, Samra K, Sharma K, Dolma K, Mohanty M, Singla N, Gupta SK. Study of factors determining caregiver burden among primary caregivers of patients with intracranial tumors. Surgical neurology international. 2015; 6.
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Cite This Article
  • APA Style

    Jyoti, S., Seema, K., Mona, S. (2025). Burden of Caregivers of Patients with Physical Illnesses in SSH, BHU. American Journal of Nursing Science, 14(4), 83-90. https://doi.org/10.11648/j.ajns.20251404.13

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    ACS Style

    Jyoti, S.; Seema, K.; Mona, S. Burden of Caregivers of Patients with Physical Illnesses in SSH, BHU. Am. J. Nurs. Sci. 2025, 14(4), 83-90. doi: 10.11648/j.ajns.20251404.13

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    AMA Style

    Jyoti S, Seema K, Mona S. Burden of Caregivers of Patients with Physical Illnesses in SSH, BHU. Am J Nurs Sci. 2025;14(4):83-90. doi: 10.11648/j.ajns.20251404.13

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  • @article{10.11648/j.ajns.20251404.13,
      author = {Srivastava Jyoti and Khanna Seema and Srivastava Mona},
      title = {Burden of Caregivers of Patients with Physical Illnesses in SSH, BHU
    },
      journal = {American Journal of Nursing Science},
      volume = {14},
      number = {4},
      pages = {83-90},
      doi = {10.11648/j.ajns.20251404.13},
      url = {https://doi.org/10.11648/j.ajns.20251404.13},
      eprint = {https://article.sciencepublishinggroup.com/pdf/10.11648.j.ajns.20251404.13},
      abstract = {Background: Chronic physical illness places a heavy burden on both the sufferer and the caregiver. Thus, there is a psychological, physical, and economic burden on family members. Caring for physically ill patients places stress and burden on caregivers. Caregivers adopt different ways to cope with it. This study was conducted to assess the burden among caregivers of physically ill patients. Several studies have specifically focused on the quality of life of caregivers of patients with physical illness. Objectives: This study examined the burden of caregivers of patients with physical illness. Methods: A cross-sectional descriptive design was employed, and 50 participants from physical illness. The data was collected through Zarit Burden Interview and activities of daily living with Socio-demographic variables of both patient and caregivers. Data was analyzed by SPSS 20 statistical software. Results: There was no significant association between caregiver burden and Socio-demographic variables like gender, domicile, educational status, marital status, type of family, occupation, religion, duration of the stay with patient, employment status, family income status except debt due to illness with which association present the findings also showed that caregivers of patients with mental illness experiences more burden than caregiver of patients with physical illness. Conclusion: There is a need to provide social support for caregivers. The outcome of this study may help the health care providers in designing stress relief programme and better delivery system of cares for primary caregivers by proper specific framing and psycho-education programs.},
     year = {2025}
    }
    

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    T1  - Burden of Caregivers of Patients with Physical Illnesses in SSH, BHU
    
    AU  - Srivastava Jyoti
    AU  - Khanna Seema
    AU  - Srivastava Mona
    Y1  - 2025/08/27
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    DO  - 10.11648/j.ajns.20251404.13
    T2  - American Journal of Nursing Science
    JF  - American Journal of Nursing Science
    JO  - American Journal of Nursing Science
    SP  - 83
    EP  - 90
    PB  - Science Publishing Group
    SN  - 2328-5753
    UR  - https://doi.org/10.11648/j.ajns.20251404.13
    AB  - Background: Chronic physical illness places a heavy burden on both the sufferer and the caregiver. Thus, there is a psychological, physical, and economic burden on family members. Caring for physically ill patients places stress and burden on caregivers. Caregivers adopt different ways to cope with it. This study was conducted to assess the burden among caregivers of physically ill patients. Several studies have specifically focused on the quality of life of caregivers of patients with physical illness. Objectives: This study examined the burden of caregivers of patients with physical illness. Methods: A cross-sectional descriptive design was employed, and 50 participants from physical illness. The data was collected through Zarit Burden Interview and activities of daily living with Socio-demographic variables of both patient and caregivers. Data was analyzed by SPSS 20 statistical software. Results: There was no significant association between caregiver burden and Socio-demographic variables like gender, domicile, educational status, marital status, type of family, occupation, religion, duration of the stay with patient, employment status, family income status except debt due to illness with which association present the findings also showed that caregivers of patients with mental illness experiences more burden than caregiver of patients with physical illness. Conclusion: There is a need to provide social support for caregivers. The outcome of this study may help the health care providers in designing stress relief programme and better delivery system of cares for primary caregivers by proper specific framing and psycho-education programs.
    VL  - 14
    IS  - 4
    ER  - 

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