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Abstract
Objective During the period of caregiving, informal caregivers of incurably ill patients experience caregiving burden that is often overlooked since the focus is on the suffering of the care receiver. In Bangladesh, informal caregivers often cannot express their suffering as they are culturally obliged to take responsibility for sick family members. This cross-sectional study was conducted among 156 informal caregivers of patients with advanced cancer attending the Department of Palliative Medicine at Bangabandhu Sheikh Mujib Medical University, Dhaka, Bangladesh.
Methods The sample was chosen consecutively based on the inclusion and exclusion criteria. Face-to-face interviews were conducted using a well-designed questionnaire. A previously translated and validated Bangla version of the Zarit Burden Interview (ZBI) was used to assess the burden of the informal caregivers.
Results The mean ZBI score of the informal caregivers was 28±11. The study found that caregiver burden was significantly associated with the relationship between the informal caregiver and the patient, as well as the caregiver’s awareness of the patient’s prognosis.
Conclusion Currently, no facilities for informal caregivers are available in Bangladesh. As extended members of the patient’s care team, the burden experienced by the caregivers needs to be given more attention and should be taken into account in healthcare.
- Palliative Care
- Cancer
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Background
Bangladesh is a densely populated, lower-middle-income country in Southeast Asia, constituting almost 2.2% of the world’s population and ranking as the eighth most populous country globally. According to the 2023 Revision of World Population Prospects, Bangladesh’s population currently stands at 173 million,1 of whom about 26.75% are aged 0–14 years, 68.02% are 15–64 years and 5.23% are 65 years and older.2
As the ageing population and the number of people living with chronic diseases increase, the care of sick individuals is shifting from hospitals to the community and family. Family members play a vital role in the long-term care of sick family members.3 Globally, over 56.8 million people require palliative care yearly, with the majority (76%) of these adults living in lower-middle-income countries.4 In Bangladesh, palliative care services are limited to level 3a and are only offered in the capital city of Dhaka.4
Research indicates that palliative care helps balance the care burden while allowing caregivers to continue with their daily lives.5 The role of informal caregivers of patients with advanced cancer has gained importance over time. Without receiving any financial support, these caregivers, often the patient’s relatives, bear most of the physical and emotional burden while caring for chronically ill patients. Informal caregivers allow care recipients to stay in their homes, delaying or avoiding hospital admissions. However, caregiving tasks can cause psychological discomfort and have long-term detrimental effects on the caregivers’ health.6 Informal caregivers can be friends, neighbours, partners or family members, and provide a wide range of support to an adult with a chronic illness or an older person with whom they have a close personal relationship with. These caregivers may live either with or apart from the care recipient and can be the primary or the secondary caregiver.7
In Bangladesh, palliative care services, since their inception, have focused on symptomatic management and improvement of the quality of life of incurably ill patients. However, there remains no formal support available for informal caregivers, who are the primary members of the patient’s care team. Considering the growing interest in this research area, this study, conducted at the Department of Palliative Medicine at Bangabandhu Sheikh Mujib Medical University (BSMMU), is the first to assess the burden experienced by informal caregivers. It is hoped that the findings of this study will help develop practical strategies to reduce caregiver burden in the future. The objective of this study is to assess the level of caregiver burden and the factors responsible for caregiver burden among informal caregivers of patients with advanced cancer attending the Department of Palliative Medicine at BSMMU.
Methods
Study design and ethics statement
This is a cross-sectional, descriptive study conducted at the Department of Palliative Medicine at BSMMU in Dhaka. The questions were elaborately explained face to face, and written informed consent was obtained. Privacy was maintained during the interview. Data were collected from August 2022 to April 2023.
Study population
We enrolled 156 informal caregivers as per the study’s inclusion criteria.
Sample criteria
Informal caregivers of patients with advanced cancer aged 18 years or older who were willing to participate in the study were included. Among them, those diagnosed with a mental disorder (eg, schizophrenia, bipolar disorder, acute psychosis and dementia) and those who appeared emotionally labile or were unable to communicate, as well as formal healthcare professionals and paid caregivers, were excluded from the study.
Study tools
Data were collected using a well-designed questionnaire consisting of two major parts. The first part covered the informal caregivers’ sociodemographic characteristics and caregiving attributes. The functional status of patients with advanced cancer was assessed using the Eastern Cooperative Oncology Group (ECOG) Performance Scale. The second part of the questionnaire included 22 items from the Zarit Burden Interview (ZBI). The Bangla version of the ZBI scale has demonstrated good psychometric properties, with a Cronbach’s alpha of 0.847 for the test and 0.839 for the retest.8
Sample size calculation
In a previous study, the mean ZBI score was 23±14.9 Considering a −3.3 change in acceptance level, we calculated a sample size of 133.10
Statistical analysis
Statistical analysis was conducted using SPSS (Statistical Package for the Social Science) V.26 statistical software. The association between categorical data and caregiver burden was determined by χ2 test and Fisher’s exact test and continuous data by independent sample t-test. A p value of <0.05 was considered analytically notable.
Results
The informal caregivers in this study had a mean ZBI score of 28±11. There was no significant association between informal caregivers’ sociodemographic factors and caregiver burden (p>0.05). Caregiver burden was significantly higher among informal caregivers who were the spouse or offspring of the patients. In this study, there was significant association between caregiver burden and the informal caregiver’s relationship with the patient (p=0.04). Caregiver burden was also significantly higher among informal caregivers who knew the prognosis of the disease compared with those who did not know the prognosis. There was also significant association between understanding the prognosis of the disease and caregiver burden (p=0.01). There was no significant association between the performance status (ECOG) of patients with advanced cancer and caregiver burden (p=0.8). Table 1 summarises the association between informal caregiver burden and the sociodemographic factors and caregiving attributes.
Association between informal caregiver burden and sociodemographic factors and caregiving attributes (N=156)
Discussion
In this study, the informal caregivers of patients with advanced cancer were either their spouse, children, siblings, parents, daughters-in-law, sisters-in-law or niece. A previous study described a cultural perspective in several places where women are mostly involved in caregiving and are taken for granted.11 Among the several types of caring relationships, spousal caregiving has been associated with the highest level of caregiver burden, with the spouse having the highest likelihood of experiencing a considerably impaired overall quality of life.12 According to some research, conventional family structures may lead to increased caregiver burden due to overly dependent family relationships.13
In our study, caregiver burden was significantly higher among caregivers who knew the prognosis of the patient’s diagnosis compared with those who did not. There was also significant association between understanding the prognosis of the disease and caregiver burden (p=0.010). However, the communication process was not identified in this study and therefore data interpretation should be approached with caution. An article published in Korea found that caregiver burden increased along with understanding the prognosis of the disease and suggested that caregivers might experience lack of emotional disclosure or lack of support from other family members due to lack of open and effective communication among the informal caregivers, the patients and other family members.11
In China, an article published about caregiver burden narrates when caregivers lost their beloved family member who is suffering from advanced cancer, the grief often starts when loss is thought to be unavoidable. Therefore, mourning begins even before death and the caregiver experiences severe stress from the thought of the inevitable loss of the patient they are still caring for.14 A number of informal caregivers, especially those who felt unprepared for the final event of death, stated they could not bear witnessing their loved ones dying.15
Study limitation
This is a cross-sectional type of quantitative study and we cannot find a causal relationship between caregiving attributes and caregiver burden. Moreover, a single hospital-based study may not represent the informal caregiver burden of the rest of the country.
Recommendation
The study design was quantitative. A mixed method study would be better to explore the cause of caregiver burden and the factors related to it. To date, in Bangladesh, there has been lack of facilities for respite care in hospital setting. Such facilities should be available in palliative care setting to help reduce the burden experienced by informal caregivers.
Conclusion
Notably, caregivers who were the spouse and children of patients with advanced cancer attending the Department of Palliative Medicine at BSMMU experienced caregiver burden. When informal caregivers learned about the prognosis of their loved ones, majority expressed burden. It could therefore be concluded that the burden of informal caregivers needs to be given more attention along with patients’ palliative care management and should be taken into account in national healthcare policies.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by the Institutional Review Board (IRB) of Bangabandhu Sheikh Mujib Medical University, Dhaka, Bangladesh (registration number 4009). Participants gave informed consent to participate in the study before taking part.
Acknowledgments
The authors would like to thank all the informal caregivers for providing consent to the study.
Footnotes
X @mr_sarker
Contributors SSQ, AKMMRB and AA envisioned and outlined the study. SSQ was responsible for data collection, data entry and data analysis, and prepared the initial draft of the manuscript. NI, FR and MS critically reviewed the manuscript draft and provided expert opinion. AA prepared the final manuscript for submission. All authors are liable for all aspects of the work. SSQ is the guarantor of this manuscript.
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.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.