A comparative study on the health status of caregivers between intensive and non-intensive care unit patients in a tertiary care hospital of urban Bengaluru

INTRODUCTION

Caregiver’s burden, a multidimensional toll exacted on care providers, can be defined as the extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical, and spiritual functioning.^1,2 caregivers care of hospitalized patient is an important aspect of any health system.³ In many low- and middle-income countries, formal systems of long-term hospital care are poorly developed and have a strong negative impact on the physical, emotional and economic status of caregivers family.⁴

In India, there has been a steady increase in the annual hospitalisation rate from 16.6 to 37.0 per 1000 population between 1995-1996 to 2014 and a mammoth brunt of care of the patient is mostly borne by the caregivers viz. family, friends or relatives.⁵ Emotional or psychological health is more disturbed in family members or caregivers of the hospitalized patients.⁶ The suffering of caring for a family member may differ depending on the disease severity and time that has passed since the diagnosis, with the burden of some diseases being felt by every member of the family.⁷ Another important aspect is the financial cost on care of the hospitalized patient, usually leading to stress, worry and face greater problems with social functioning and relationships.⁸ In India, the middle class and lower income families face the brunt as majority clear the dues by out of pocket expenses often having to mortgage their properties.

One of the issues least focused in any hospitalization of patients are the role of the caregivers in the nursing of the patients. They play an equally vital role in the recovery of patient. Very little information is available on the burden of the caregivers in India. It is generally assumed that Intensive care unit (ICU) patients’ caregivers are more susceptible compared to non-ICU patients in view of the critical nature of care.

Comparatively less is known about the emotional/ psychological, physical and financial demands and responsibilities that are placed on the attender of the patient during his/her hospital stay. Thus, the objectives of the study are to describe the socio-demographic profile of the caregivers of ICU and non-ICU patients in a tertiary care hospital in urban Bengaluru and to assess and compare the physical and psychological burden among the caregivers of ICU and non-ICU patients.

METHODS

A descriptive, hospital-based, cross-sectional study was conducted among 256 caregivers of ICU and non-ICU patients in a tertiary care hospital in urban Bengaluru for a duration of 6 months from July to December, 2019.

Sample size and data collection

The prevalence of burden on family caregivers of cancer patients as mentioned by Lukhmana et al was 43.5%.⁹ Assuming a confidence interval of 95%, α=0.05, precision of 10% and a design effect of 2, sample size of 197 was calculated. A 30% non-response rate was added to it and final sample size of 256 was achieved. The study enrolled 127 caregivers of ICU patients and 129 of non-ICU patients who satisfied the inclusion and exclusion criteria. All subjects who were 18 years and above at the time of interview and were available throughout the hospital stay of the patient were included in the study, while those not willing to give consent were excluded. The study was done on only those caregivers of patients who were admitted in the hospital and excluded day care and OPD patients.

A pretested, semi-structured questionnaire having detailed information on socio demographic profile and health status was used for the collection of data by interview method. A modified Hospital anxiety and depression scale (HADS) was used to assess the anxiety burden among the caregivers.¹⁰ The questionnaire had 5 items reflecting anxiety and each item had been answered by the patient on a four points (0-3) response category so the possible scores ranged from 0 to 15 for anxiety. On analysis of scores, a score of 0 to 5 was regarded as being in the normal range, a score of 6-7 was considered as borderline and score of 8-15 indicated abnormal or the presence of the anxiety state.

A modified perceived stress scale was used to assess the stress burden among the caregivers.¹¹ The scale had 5 items with score from 0-4 for each item, thus total score ranged from 0-20. Responses included as never (0), almost never (1), sometimes (2), fairly often (3) and very often (4). A score of 1-7 was considered as low stress, 8-13 as moderate stress and 14-20 as high stress.

Ethical issues

The study was approved by Institutional Ethical Committee and does not involve any intervention. Written informed consent was taken from the caregivers before enrolment in the study and their confidentiality was maintained at all times.

Statistical analysis

The data collected in the study was entered in MS Excel and analysed using IBM-SPSS statistics software package version 21.0. The normality of the data was checked using Shapiro-Wilk test in SPSS 21.0, since it was not normally distributed, non-parametric tests were used for statistical analysis. The results were expressed as median, inter-quartile range, frequency and percentages.

The physical, psychological and financial burden was compared across groups by Chi-square test. The anxiety and stress score were compared within the group using Wilcoxon Sign test and across groups using Mann Whitney U test. The association between the caregivers’ demographic characteristics and anxiety, stress scores was evaluated by univariate and multivariate analysis. For all statistical tests, a p value <0.05 was considered statistically significant.

RESULTS

This study included a total of 256 caregivers of a private medical college tertiary care hospital, among whom 127 were ICU patients’ caregivers and 129 of non-ICU patients.

Characteristics of the caregivers

The socio-demographic variables of both the groups are described in Table 1. The median age of the caregivers was 37 (28-50) years ranging from 15 to 72 years; maximum of them being females (72.26%). Majority of them were immediate family members viz. 59 (29.04%) spouse, 58 (22.66%) children, 54 (21.09%) parents followed by 58 (22.66%) relatives and only 2 (0.78%) siblings. 145 out of 256 caregivers belonged to upper lower socio-economic class and 179 (69.92%) resided in urban area. Only 24 (09.37%) of all caregivers had health insurance of either government and private. The median duration of stay in the hospital was 3 (2-6) days with minimum being 2 hours and maximum being 47 days. The hospital stay duration varied significantly between caregivers of ICU and non-ICU group (χ²=9.036, p=0.0026), and more than 7 days stay was mostly observed non-ICU group 52 (64.19%) compared to 81 (31.64%) in ICU group (Z=2.556, p=0.010).

Caregiver burden

Out of 256 caregivers, 196 (76.56%) experienced some form of physical burden, 112 (57.14%) belonged to ICU group and 84 (42.86%) non-ICU group (Z=2, p=0.045). Psychological problems like anxiety were observed in 139 (54.29%) caregivers, 87 (62.59%) were from ICU and 52 (37.41%) from non-ICU group (Z=2.969, p=0.002) and stress was observed in 203 (79.29%) caregivers, predominantly in 110 (54.19%) ICU group compared to 93 (45.81%) non-ICU caregivers (Z=1.193, p=0.23).

The common physical symptoms observed was in 100 (39.06%) headache, 77 (30.08%) leg cramps, 68 (28.56%) heaviness in the head and 43 (16.79%) chest pain/ heartburn respectively. The other symptoms were palpitation, bloating, post prandial acidic regurgitation and gastrointestinal symptoms as shown in Table 2.

There was no significant difference in the physical burden seen across of caregivers of both groups. There was significant difference between the non-ICU and ICU caregivers in the practice of personal hygiene (χ²=4.827; p=0.027) and oral hygiene (χ²=10.210; p=0.001). The psychological symptoms observed are described in Table 3.

The anxiety score (Z=-4.986, p≤0.001) was higher among ICU caregivers (mean rank=151.68) as compared to non-ICU (mean rank=105.68). Similarly, the stress score (Z=-4.395, p≤0.001) was higher among ICU (mean rank=148.94) as compared to non-ICU (mean rank=108.38) caregivers. Both abnormal anxiety score (χ²=20.51; p=0.00003) and high stress score (χ²=11.87; p=0.002) was considerably greater in ICU caregivers. On comparison, the anxiety and stress score within the group was not significant. Only 14 (11.02%) ICU caregivers and 10 (07.75%) non-ICU caregivers had health insurance (Z=-9.075; p≤0.001).

Overall, median expenditure was Rs. 30,000 (Rs.10,000-8,0000), ranging from as low as Rs. 1,000 to maximum Rs. 8,49,000 among 256 caregivers. 164 (64.06%) of total caregivers had an expenditure of less than Rs. 50,000, followed by 59 (23.05%) who spent Rs. 50,000 to 1 lakh and 33 (12.89%) had more than Rs. 1 lakh for medical expenses. A significant greater financial burden was observed in caregivers of ICU patients (χ²=31.167, p value ≤0.001).

Factors affecting anxiety and stress score

The univariate analysis of the anxiety score and caregiver demographic characteristics was significantly associated with the caregiver’s medical expenses (OR=0.147, p=0.019), loss of sleep (OR=-0.296, p≤0.001), loss of appetite (OR=0.185, p=0.002) and not associated with the caregiver’s age, gender, religion, residence, socioeconomic status, type of family and duration of hospitalization). Whereas, the caregiver’s stress score was associated with place of residence (OR=-0.154, p=0.01) and time since admission (days) (OR=-0.161, p=0.006) along with medical expenses (OR=-2.102, p=0.037), loss of sleep (OR=-3.762, p≤0.001) and loss of appetite (OR=-3.064, p=0.002) (Table 4).

Multivariate analysis revealed that caregiver burden’s anxiety score was independently related with their medical expenses (OR=0.132, p=0.03), loss of sleep (OR=-0.324, p≤0.001) and loss of appetite (OR=0.188, p=0.001); on the other hand, their stress score was independently associated with time since admission (OR=-0.192, p=0.002), loss of sleep (OR=0.265, p≤0.001) and loss of appetite (OR=-0.184, p=0.002).

Note: *Figures in parentheses indicates percentages; #p value<0.05=significant.

Note: *Multiple responses, **Figures in parentheses indicates percentages; #No significant difference observed. Others: excessive sweating, pain abdomen, constipation, loose stools, nausea, vomiting, fainting, cough.

*Figures in parentheses indicates percentages; #p value<0.05=significant.

DISCUSSION

The health of the caregiver will greatly enhance the doctor patient relationship which of late has taken a course to the worst. The caregivers go through a great deal of physical pain, psychological distress and financial burden in the care of their loved ones. There is hardly any literature available in India looking at these determinants of health. In the present study, the physical, psychological and economic burden on the caregivers of the hospitalized patients in the care of ICU and non-ICU patients was assessed and the factors associated was analysed. Most of the caregivers, in both groups, were adults, urban, elderly, majority being females and were either spouse/parents/children of the patients contrary in a study by Xiao et al had observed that majority were elderly (69.28±7.19 years), males and 84% were spouses of the patients.¹² However, these demographic characteristics did not aggravate the burden of the caregivers in another study by Li et al.¹³

A variety of physical symptoms were reported by the caregivers which was almost similar in both ICU and non-ICU patients. Identically, studies on caregivers of hospitalized persons had reported that long-term caregiving can adversely affect caregivers’ physical health.¹⁴ Impaired sleep and fatigue are other prevalent health risks in family caregivers.¹⁵ There was significant drop in the practice of personal and oral hygiene due to the stay in hospital.

In current study, borderline and abnormal anxiety was noted in both groups, higher in ICU group similar to a study by Zahrani et al had shown high rates of depression (72.8%), anxiety (76.5%) and stress (61.5%) among caregivers of chronic illness including 17% ICU admission. The duration of stay and caregivers physical, anxiety and stress scores were significantly associated indicating longer the stay, greater was the chances of being affected. Caregivers’ stress levels were less common among patients with short-term hospital stay (<7 days) than long-term hospital stay, in concurrence to present study.¹⁶ On the contrary, longer duration of care was associated with psychological symptoms observed more among caregivers of children with phenylketonuria by Gharaei et al and half of the participants had mild to severe levels of depression, anxiety and stress scores respectively.^17,18

In the present study, most of the caregivers had enormous medical expenses including indirect expenditure, had to support family and experienced significant life pressures in concurrence to a study where economic resources had exceeded in 78.7% in a study done by Lkhoyaali et al, 56% had to take credits, 18.7% sold their goods and 70.7% requested help from benefactors.¹⁹ Other studies showed that caregivers had higher mean score of financial problems due to reduced income and increased cost due to medical needs.^20,21

In country such as India, the accessibility and availability to health care services is dependent on the financial status of the individual. The government has introduced health insurance schemes and is moving towards universal health coverage; however, the mass is yet to utilize the benefits. The individual with health insurance is better off than those paying out of pocket expenses and those seeking care in public hospital are in safety net, but as they come from low income families, they are worried about the loss of income due to their presence in the hospital. Focus on health of caregivers is need of the hour. The caregiver is usually not familiar with the hospital system and undergoes enormous stress, fear and pressure.

Hospitals should employ doctors who can show sympathy and empathy for the care of caregiver to ease their fear especially women, educate them about importance of personnel and oral hygiene, prepare them for the hospital stay, to seek care when in physical or psychological distress, inform about social support mechanism available to help caregivers to minimise the financial burden. Studies involving private hospital, corporate hospital and government hospital covering the entire country is needed for greater understanding of the problem and generalization.

Limitation of this study was that it did not include the caregivers who had lost their loving ones during hospitalization. The study was done in a single territory hospital (private medical college hospital).

CONCLUSION

In conclusion, this study found out that three fourth of the caregivers had one or the other physical symptoms and a half of them had stress and anxiety irrespective of ICU or non-ICU admission. The financial burden was more among the ICU caregivers and the longer duration of stay had affected the health of the caregivers.

Funding: No funding sources

Conflict of interest: None declared

Ethical approval: The study was approved by the Institutional Ethics Committee

REFERENCES

1. 1. Zarit SH, Todd PA, Zarit JM. Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist. 1986;26(3):260-6.
2. 2. Gillick MR. The critical role of caregivers in achieving patient-centered care. JAMA. 2013;310(6):575-6.
3. 3. Channon AA, Andrade MV, Noronha K, Leone T, Dilip TR. Inpatient care of the elderly in Brazil and India: assessing social inequalities. Soc Sci Med. 2012;75(12):2394-402.
4. 4. WHO. Supporting informal caregivers of people living with dementia, 2015. Available at: https://www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_informal. Accessed on 01 November 2021.
5. 5. Pandey A, Ploubidis GB, Clarke L, Dandona L. Hospitalisation trends in India from serial cross-sectional nationwide surveys: 1995 to 2014. BMJ Open. 2017;7(12):14188.
6. 6. Bowen C, MacLehose A, Beaumont JG. Advanced multiple sclerosis and the psychosocial impact on families. Psychol Health. 2011;26(1):113-27.
7. 7. Douglas SL, Daly BJ, Kelley CG, O'Toole E, Montenegro H. Impact of a disease management program upon caregivers of chronically critically ill patients. Chest. 2005;128(6):3925-36.
8. 8. Poston D, Turnbull A, Park J, Mannan H, Marquis J, Wang M. Family quality of life: a qualitative inquiry. Ment Retard. 2003;41(5):313-28.
9. 9. Lukhmana S, Bhasin SK, Chhabra P, Bhatia MS. Family caregivers' burden: A hospital based study in 2010 among cancer patients from Delhi. Indian J Cancer. 2015;52(1):146-51.
10. 10. Snaith RP. The Hospital Anxiety And Depression Scale. Health Qual Life Outcomes. 2003;1:29.
11. 11. Cohen S. Perceived stress scale, 2019. Available at https://www.mindgarden.com/documents/PerceivedStressScale.pdf. Accessed on 01 November 2021.
12. 12. Xiao P, Zhou Y. Factors associated with the burden of family caregivers of elderly patients with femoral neck fracture: a cross-sectional study. J Orthop Surg Res. 2020;15(1):234.
13. 13. Li C, Miao J, Gao X, Zheng L, Su X, Hui H, Hu J. Factors Associated with Caregiver Burden in Primary Caregivers of Patients with Adolescent Scoliosis: A Descriptive Cross-Sectional Study. Med Sci Monit. 2018;24:6472-9.
14. 14. Pinquart M, Sörensen S. Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2007;62(2):126-37.
15. 15. Choi J, Donahoe MP, Hoffman LA. Psychological and Physical Health in Family Caregivers of Intensive Care Unit Survivors: Current Knowledge and Future Research Strategies. J Korean Acad Nurs. 2016;46(2):159-67.
16. 16. Zahrani R, Bashihab R, Ahmed AE, Alkhodair R, Khateeb S. The prevalence of psychological impact on caregivers of hospitalized patients: The forgotten part of the equation. Qatar Med J. 2015;2015(1):3.
17. 17. Gharaei J, Mostafavi S, Alirezaei N. Quality of Life and the Associated Psychological Factors in Caregivers of Children with PKU. Iran J Psychiatry. 2011;6(2):66-9.
18. 18. Pelt DC, Milbrandt EB, Qin L, Weissfeld LA, Rotondi AJ, Schulz R, et al. Informal caregiver burden among survivors of prolonged mechanical ventilation. Am J Respir Crit Care Med. 2007;175(2):167-73.
19. 19. Lkhoyaali S, Haj MA, Omrani F, Layachi M, Ismaili N, Mrabti H, et al. The burden among family caregivers of elderly cancer patients: prospective study in a Moroccan population. BMC Res Notes. 2015;8:347.
20. 20. Ahmed A, Darweesh AED, Mohamed I, Ahmed Z. Correlation Between Socio-Demographic Characteristics and Burden Among Family Caregivers of Psychotic Patients. J Health Med Nurs. 2020;70:42-51.
21. 21. Kumar R, Saini R. Extent of Burden and Coping Strategies among Caregivers of Mentally-ill Patients. Nurs Midwif Res J. 2012;8(4):274-84.