What is already known on this topic
Caregiver burden is a significant issue, especially among informal caregivers in palliative care settings, due to the physical, emotional, and social demands of providing long-term support to patients with chronic or terminal conditions. Studies have shown that caregiver burden negatively impacts caregivers' quality of life. Although Kerala has a well-established palliative care system, the extent and factors associated with caregiver burden within this structured support system remain underexplored.
What this study adds
This study provides valuable insights into the prevalence and determinants of caregiver burden in Kerala, a state known for its community-based palliative care model. It identifies specific risk factors for higher burden, such as caring for elderly patients, being a child caregiver, and caring for patients with prolonged illness durations. Additionally, the study highlights the direct association between moderate to severe caregiver burden and reduced quality of life across physical, psychological, and social domains.
How this study might affect research, practice or policy
The findings from this study may inform policies aimed at integrating caregiver support into palliative care programs. By identifying high-risk caregiver groups, such as children of elderly patients and those managing long-term illnesses, health systems can develop specific interventions, like caregiver education and community-based support groups, to alleviate burden.
Introduction
By 2050, one in six people globally will be over 65, compared with one in 11 in 2019, driving a healthcare shift from hospital-centric to community-based care, significantly increasing the need for palliative services. 1 Palliative care focuses on improving the quality of life for patients with serious illnesses through the prevention and relief of suffering. Kerala state accounts for 90% of India’s palliative care services. 2 Known for its community-based, cost-effective approach, Kerala has established palliative care units within the public health system to serve all segments of the population, especially marginalised communities. 3 A critical component of these interventions is psychosocial support and family education, which aids family members in providing basic care. 4 Over time, Kerala’s palliative care has significantly benefited both patients and their families. 5
Informal caregivers, mostly family members, play a crucial role in supporting patients under palliative care services, facing numerous emotional, social and physical challenges. Caregiver burden includes anxiety, depression, sleep disturbances and physical exhaustion, often forcing changes in lifestyle and social activities. The personal perception of caregiving impacts caregivers’ emotional, social, financial, physical and spiritual well-being, affecting their quality of life. 6 7 Caregiver burden refers to the strain experienced by individuals caring for a family member over an extended period and is linked to increased all-cause mortality. However, studies on caregiver burden in India and Kerala are limited. We examined the prevalence and factors associated with caregiver burden and its relation to the quality of life.
Methods
Study design, setting and duration
This cross-sectional analytical study was conducted among informal caregivers of palliative care patients supported by the local government and non-governmental units in Ernakulam District, Kerala, India, over a 6-month period from October 2023 to March 2024.
Study population
Informal caregivers aged 18 years and above, providing care for at least 1 year to patients registered in the palliative care registry, were included.
Sample size
Based on a study in Malaysia with a caregiver burden prevalence of 47.4%, 8 the minimum sample size required was 115 with a 10% margin of error and 20% non-response rate.
Sampling
A total of 374 patients were registered in the palliative care facility at General Hospital, Ernakulam. A line list of patients was obtained from the palliative care registry of the hospital. The palliative care nurse contacted the caregivers of patients who met the inclusion criteria consecutively via telephone to assess their willingness to participate in the study. All caregivers contacted provided consent for participation. For those who expressed willingness, a house visit was conducted by the researcher, accompanied by an Accredited Social Health Activist, to further assess eligibility and finalise consent. Participants were then enrolled in the study consecutively until the required sample size was achieved. Patients unable to comprehend the questionnaires were excluded.
Data collection
Data were collected through semistructured interviews, maintaining privacy and confidentiality. The interview included sociodemographic factors and used the Zarit Burden Interview-22 and WHOQOL-BREF (Malayalam) for assessing caregiver burden and quality of life.
Study tools
Zarit Burden Interview-22 ( Malayalam ): a 22-item questionnaire assessing caregiver burden, with scores ranging from 0 to 88, categorised into four levels of burden. 9
WHOQOL-BREF ( Malayalam ): a 26-item tool assessing quality of life across four domains (physical, psychological, social and environmental) on a 0–100 scale. 10
Data analysis
Data were entered using MS Excel and analysed using Stata V.14.0. Quantitative variables were expressed as mean and SD; categorical variables as numbers and percentages. Associations with caregiver burden were analysed using χ 2 tests, unadjusted ORs and binary logistic regression. The quality of life between different burden levels was analysed using an independent t-test, with p<0.05 considered significant.
Results
The majority of caregivers were female (80%), were predominantly aged around 70 years and more than three-fourths (80%) had a chronic illness. Prevalence of moderate to severe burden was 32.1% (95% CI 23.7% to 41.5%, n=37), and severe burden was 6.2% (95% CI 2.4% to 12.1%, n=7).
Table 1 presents the sociodemographic and patient factors associated with caregivers’ burden. Caregivers of patients aged ≥73 years (adjusted OR (aOR)=7.19, 95% CI 1.87 to 27.71, p=0.004), children acting as caregivers (aOR=11.09, 95% CI 1.21 to 101.03, p=0.033) and caregivers of patients with a disease duration of 5 years or more (aOR=3.62, 95% CI 1.04 to 12.67, p=0.044) reported significantly higher burden compared with their counterparts.
Table 1
Sociodemographic and patient factors associated with caregivers’ burden (n=115)
* P value for adjusted analysis: variables with a p value <0.2 in the unadjusted analysis were used in the regression model. † Less than 2 lakhs; less than INR 0.2 million. ‡ More than 2 lakhs; more than INR 0.2 million. aOR, adjusted OR; uOR, unadjusted OR.
| Variable | Moderate/severe burden (n=44) | No/mild burden (n=71) | uOR (95% CI) | aOR (95% CI) | P value * |
| n (%) | n (%) | ||||
| Caregiver’s age | |||||
| Up to 63 | 12 (23.1) | 40 (76.9) | Ref | Ref | – |
| 64 and above | 32 (50.8) | 31 (49.2) | 3.44 (1.52 to 7.75) | 0.90 (0.17 to 4.72) | 0.902 |
| Patient’s age | |||||
| Up to 72 | 46 (83.6) | 9 (16.4) | Ref | Ref | – |
| 73 and above | 25 (41.7) | 35 (58.3) | 7.15 (2.97 to 17.24) | 7.19 (1.87 to 27.71) | 0.004 |
| Caregiver’s gender | |||||
| Male | 8 (34.8) | 15 (65.2) | Ref | – | – |
| Female | 36 (39.1) | 56 (60.9) | 1.20 (0.46 to 3.13) | – | – |
| Patient’s gender | |||||
| Female | 31 (68.9) | 14 (31.1) | Ref | – | – |
| Male | 40 (57.1) | 30 (42.8) | 1.66 (0.75 to 3.65) | – | – |
| Religion | |||||
| Christian | 16 (39) | 25 (61) | 1.57 (0.61 to 4.02) | 1.17 (0.31 to 4.37) | 0.811 |
| Hindu | 11 (28.9) | 27 (71.1) | Ref | Ref | – |
| Muslim | 17 (47.2) | 19 (52.8) | 2.19 (0.84 to 5.72) | 3.20 (0.82 to 12.43) | 0.093 |
| Education | |||||
| Primary | 17 (47.2) | 19 (52.8) | 2.9 (1.15 to 7.30) | 0.95 (0.19 to 4.55) | 0.95 |
| Secondary | 15 (53.6) | 13 (46.4) | 3.75 (1.40 to 10.04) | 4.12 (0.94 to 10.07) | 0.06 |
| Graduate and above | 12 (23.5) | 39 (76.5) | Ref | Ref | – |
| Patient’s education | |||||
| Primary/secondary | 48 (56.5) | 37 (43.5) | 2.53 (0.99 to 6.53) | 2.66 (0.58 to 12.29) | 0.211 |
| Graduate and above | 23 (76.7) | 7 (23.3) | Ref | Ref | – |
| Occupation | |||||
| Employed | 11 (32.3) | 23 (67.6) | Ref | – | – |
| Unemployed | 33 (30.7) | 48 (59.3) | 1.29 (0.48 to 3.46) | – | – |
| Marital status | |||||
| Unmarried | 1 (25.0) | 3 (75.0) | 1.90 (0.19 to 18.83) | – | – |
| Married | 43 (38.7) | 68 (61.3) | Ref | – | – |
| Relationship with the patient | |||||
| Spouse | 35 (41.2) | 50 (58.8) | 4.2 (0.88 to 19.95) | 8.4 (0.74 to 103.46) | 0.085 |
| Children | 7 (43.7) | 9 (56.2) | 4.67 (0.78 to 28.05) | 11.09 (1.21 to 101.03) | 0.033 |
| Others | 2 (14.3) | 12 (85.7) | Ref | Ref | – |
| Daily care hours | |||||
| 4–10 hours | 24 (38.7) | 38 (61.3) | 1.04 (0.49 to 2.22) | – | – |
| More than 10 hours | 20 (37.7) | 33 (62.3) | Ref | – | – |
| Presence of any chronic illness | |||||
| Yes | 37 (40.2) | 55 (59.8) | 1.54 (0.57 to 4.10) | – | – |
| No | 7 (30.4) | 16 (69.6) | Ref | – | – |
| Annual household income | |||||
| Up to 2 lakhs † | 20 (48.8) | 21 (51.2) | 1.98 (0.91 to 4.34) | 2.29 (0.74 to 7.11) | 0.149 |
| More than 2 lakhs ‡ | 24 (32.4) | 50 (67.6) | Ref | Ref | – |
| Underlying disease of the patient | |||||
| Malignant | 53 (68.8) | 24 (31.2) | Ref | 0.43 (0.13 to 1.46) | 0.177 |
| Non-malignant | 18 (47.4) | 20 (52.6) | 2.45 (1.10 to 5.45) | Ref | – |
| Duration of disease of the patient | |||||
| Up to 5 years | 55 (76.4) | 17 (23.6) | Ref | Ref | – |
| More than 5 years | 16 (37.2) | 27 (62.8) | 5.36 (2.39 to 12.43) | 3.62 (1.04 to 12.67) | 0.044 |
For caregivers with moderate to severe burden, the mean scores for physical health and psychological health were significantly lower compared with those with no or mild burden (p<0.001). Social relations also showed a significantly lower score for those with higher burden compared with those with no or mild burden (p=0.002).
Discussion
Despite robust palliative care support, our findings reveal a significant prevalence of caregiver burden, with only 25.2% of caregivers reporting no burden, while 36.5% experienced mild to moderate burden and 32.1% faced moderate to severe burden. In a similar study conducted by Ahmad Zubaidi et al in Malaysia, 47.4% of caregivers experienced burden, with most reporting mild to moderate levels. 8 Another study in New Delhi reported that 70.22% of caregivers faced mild to moderate burden, and 21.38% experienced moderate to severe burden. 11 However, in a study by Menon et al on caregivers of older patients with cancer in India, 76.4% reported no burden. 12 These varied findings indicate that caregiver burden is influenced by several factors beyond formal support services.
Kerala, compared with other Indian states, is in an advanced stage of epidemiological transition, characterised by higher life expectancy, ageing population, lower mortality and higher morbidity, similar to western countries. Kerala’s Palliative Care Policy (2019) aims to support this transition by including provisions for caregiver support. However, implementation is still in its early stages. Adopting caregiver support models like the UK’s National Health Service and community-based strategies such as time banking may help alleviate caregiver burden in Kerala. 13 Time banking fosters a sense of belonging, an important aspect of social capital, and has been shown to improve caregivers’ well-being, especially for older adults or those from lower income groups.
The patient’s age significantly impacted caregiver burden, with older patients typically requiring more intensive care due to multiple comorbidities and increased dependence, which can exacerbate the strain on caregivers. Caregivers of patients with a disease duration of 5 years or more were more likely to experience moderate to severe burden, consistent with a systematic review by Choi et al that identified patient age and disease duration as key factors in caregiver burden. 14 Children acting as caregivers also faced a higher degree of burden, often feeling trapped between responsibilities for their parents and their own family and career obligations, similar to findings from other studies. 15
Our study revealed a strong inverse relationship between caregiver burden and quality of life, with significant reductions in general, physical, psychological and social scores among caregivers experiencing moderate to severe burden. This aligns with findings from other studies. 11 Caregivers often face compounded challenges, including physiological ageing, social isolation and comorbidities, which amplify the burden of caregiving. Identifying caregivers at high risk for burden earlier in their caregiving journey may help mitigate adverse psychosocial outcomes. Innovative solutions like mobile applications for caregiver resilience, online peer groups and shared caregiving responsibilities could provide much-needed support and alleviate caregiver burden.
This study focused on informal caregivers in a region like Kerala, where a well-established palliative care system is in place, allowing for a comprehensive analysis of caregiver burden within a structured support system. However, there are several limitations. First, the cross-sectional design of the study limits the ability to establish causality between caregiver burden and associated factors. Longitudinal studies would better capture the evolution of caregiver burden over time. The reliance on self-reported measures may introduce response bias, as caregivers might under-report their burden due to social desirability or feelings of guilt. The sample size, while sufficient for statistical analysis, may still limit the generalisability of the findings beyond the specific palliative care context in Kerala. Lastly, the study’s exclusion of caregivers unable to comprehend the questionnaire potentially omits a vulnerable group experiencing significant burden.
Conclusion
Caregiver burden was prevalent even with high-quality palliative care, particularly among caregivers of older patients, children as caregivers and those taking care of patients with prolonged disease duration. Targeted interventions for caregivers of older patients, children acting as caregivers and those caring for patients with prolonged disease durations are likely to reduce burden and improve their quality of life.
Acknowledgements
We extend our deepest gratitude to the Accredited Social Health Activist (ASHA) workers and palliative care nurses for their unwavering support and dedication throughout this research. We also express our profound appreciation to the palliative care patients and their caregivers for their wholehearted cooperation and participation which was essential in making this study possible.
Funding: The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Patient consent for publication: Consent obtained directly from patient(s)
Ethics approval: This study involves human participants and ethical clearance was obtained from the Ethics Committee of Amrita School of Medicine (Ref No: ECASM-AIMS-2023-263) before the study. Informed consent was collected, and privacy and confidentiality were maintained throughout. Participants gave informed consent to participate in the study before taking part.
Provenance and peer review: Not commissioned; internally peer reviewed.
References
1 United Nations Department of Economic and Social Affairs World population ageing 2019 Available https://www.un.org/en/development/desa/population/publications/pdf/ageing/WorldPopulationAgeing2019-Report.pdf Accessed 01-Aug-2024
2 Kumar S Models of delivering palliative and end-of-life care in India Curr Opin Support Palliat Care 2013 7 216 22 10.1097/SPC.0b013e3283610255 23635881
3 Bollini P Venkateswaran C Sureshkumar K Palliative care in Kerala, India: a model for resource-poor settings Onkologie 2004 27 138 42 10.1159/000076902 15138345
4 Philip RR Philip S Tripathy JP et al Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers BMC Palliat Care 2018 17 26 10.1186/s12904-018-0278-4 29444688 PMC5813368
5 Sebastian T Chenchiliyan A Pain and palliative care services of General Hospital, Ernakulam: a case study based on participatory approach Int J Sci Res 2015 4 968 71 10.21275/v4i11.NOV151276
6 Bugge C Alexander H Hagen S Stroke patients’ informal caregivers. Patient, caregiver, and service factors that affect caregiver strain Stroke 1999 30 1517 23 10.1161/01.str.30.8.1517 10436093
7 Perkins M Howard VJ Wadley VG et al Caregiving strain and all-cause mortality: evidence from the REGARDS study J Gerontol B Psychol Sci Soc Sci 2013 68 504 12 10.1093/geronb/gbs084 23033358 PMC3674731
8 Ahmad Zubaidi ZS Ariffin F Oun CTC et al Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross sectional study BMC Palliat Care 2020 19 186 10.1186/s12904-020-00691-1 33292214 PMC7722979
9 Zarit SH Reever KE Bach-Peterson J Relatives of the impaired elderly: correlates of feelings of burden Gerontol 1980 20 649 55 10.1093/geront/20.6.649 7203086
10 The Whoqol Group The World Health Organization Quality of Life assessment (WHOQOL): development and general psychometric properties Soc Sci Med 1998 46 1569 85 10.1016/S0277-9536(98)00009-4 9672396
11 Mishra S Gulia A Satapathy S et al Caregiver burden and quality of life among family caregivers of cancer patients on chemotherapy: a prospective observational study Ind J Palliat Care 2021 27 109 12 10.4103/IJPC.IJPC_180_20 PMC8121224 34035627
12 Menon N Patil VM Ramaswamy A et al Caregiver burden in older Indian patients with cancer- Experience from a tertiary care center J Geriatr Oncol 2022 13 970 7 10.1016/j.jgo.2022.05.008 35750629
13 Kakar AK Investigating factors that promote time banking for sustainable community based socio-economic growth and development Comput Hum Behav 2020 107 105623 10.1016/j.chb.2018.07.034
14 Choi JY Lee SH Yu S Exploring factors influencing caregiver burden: a systematic review of family caregivers of older adults with chronic illness in local communities Healthcare (Basel) 2024 12 1002 10.3390/healthcare12101002 38786412 PMC11121359
15 Khanal B Chalise HN Caregiver burden among informal caregivers of rural older persons in Nepal J Health Care Res 2020 1 149 56 10.36502/2020/hcr.6173