Factors Associated with Caregiver Burden in Families of Patients with Palliative and Chronic Illness: A Cross-Sectional Study

Abstract

The World Health Organization (WHO) defines palliative care as comprehensive support provided to patients with terminal illnesses and their families.1 Worldwide, only about 14% of people who need palliative care currently receive it.1 Palliative care is important in improving the quality of life for patients with chronic or terminal illness. However, providing palliative care which may demand a long and persistent care often has significant psychological, emotional, and physical impacts on family members who serve as primary caregivers. 2 The multidimensional stress arising from physical, emotional, and financial caregiving demands can be overwhelming, adding to the challenges faced by caregivers in this context.2 In providing care for individuals with palliative, chronic health conditions or long-term medical needs, the role of the caregiver is very crucial.3–5 Palliative and chronic illnesses have different characteristics, and thus their caregiving challenges differ from the outset. Palliative illness typically refers to life-threatening conditions that require care focused on comfort, symptom management, and improving the quality of life of patients who may be in the final stages of their illness. 1 In contrast, chronic illness is a long-term condition that is generally not fully curable, such as diabetes or Journal of Multidisciplinary Healthcare 2025:18 4497–4510 4497 © 2025 Haroen et al. This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms. php and incorporate the Creative Commons Attribution – Non Commercial (unported, v4.0) License (http://creativecommons.org/licenses/by-nc/4.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. 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Journal of Multidisciplinary Healthcare Open Access Full Text ArticleReceived: 8 April 2025 Accepted: 24 July 2025 Published: 31 July 2025Journal of Multidisciplinary Healthcare downloaded from https://www.dovepress.com/ For personal use only. hypertension, and requires ongoing management to prevent complications and maintain daily functioning.6 However, the ongoing responsibility of caring for patients often poses various challenges that can impact their physical, emotional, social and economic well-being.3,7,8 The burden experienced by caregivers, known as caregiver burden, reflects the stress that arises from the demands of complex and prolonged care. 9 This burden can increase with the complexity of the patient’s condition, limited social support, and the lack of resources available to assist caregivers in carrying out their roles.5,7 The similar results were reported in a study conducted in Indonesia, which found that several factors that cause burden on caregivers are income, marital status, and support from other family members. 10 In addition, low knowledge and inadequate skills of caregivers, limited availability of health services can be the cause of high burden for caregivers in Indonesia. 10–13 However, family caregivers ethnicity did not have significant differences. 11 Several previous studies have reported that many caregivers of palliative patients or individuals with chronic illnesses experience a relatively high level of burden. 8,14–17 In Southeast Asia, caregiver burden is a common challenge in countries with similar healthcare systems and resources. A study in Thailand found that caregivers of patients with chronic illnesses also reported high levels of stress due to limited support and resources.18,19 For comparison, study conducted in US reported that caregivers face additional challenges, including lack of formal training and financial difficulties, which exacerbate their caregiving roles. 20 These regional disparities highlight the importance of under- standing the unique needs of caregivers in Southeast Asia, where healthcare systems are often under-resourced compared to higher-income countries. The high burden experienced by caregivers is correlated with the poor quality of life of the patient and caregiver. 15 In addition, high burden levels also have an impact on deaths and re-hospitalizations of patients due to poor quality care. 21 Similar studies reported that the high burden on caregivers will affect the quality of care given to patients, so it will affect the recovery process both physically and psychologically. 22 As such, understanding the factors that contribute to caregiver burden is important. Various factors can influence caregiver burden, especially for those who have family members with palliative conditions or chronic illnesses. A previous systematic review concluded that caregiver variables that increase burden are increasing age, male gender, partner as care recipient, longer duration of care provision, and no assistance. 23 In addition, factors such as low education level, long duration of caregiving, unemployment, the complexity of treatment, and the number of patient comorbidities significantly correlate with increased caregiver burden. 24 The increasing number of patients with palliative conditions due to demographic shifts and increasing life expectancy globally is one of the urgencies of this research.1,25,26 As the elderly and chronically ill population increases, the need for palliative care also increases, which in turn increases the burden on families as primary caregivers.3,9,27 This burden can be compounded if caregivers do not have adequate skills or resources to handle this complex situation. 22 Therefore, research on factors that influence caregiver burden is very important to identify strategies to help ease them. Although there has been some research on caregiver burden, further exploration is still needed regarding the specific factors that influence caregivers in different cultural contexts and health systems, such as Indonesia. A previous systematic review analyzed 12 Asian studies, but none were from Indonesia.23 This shows that limited studies still highlight this topic and population in Indonesia. In addition, Rasch analysis is rarely used in caregiver populations. Rasch is more common in morbidly obese populations,28 CHD,29 and spinal cord injury populations.30 The Rasch model in Indonesia is more widely used in the student population.31–35 In addition, Rasch analysis transforms ordinal data into interval-level measurements, enabling more precise quantification of burden levels and item difficulty.36 Therefore, this study aims to further explore the factors that influence the burden of caregiving which is an urgent need that must be identified immediately. Understanding these factors is critical to developing targeted interventions in low-resource settings like Indonesia