In recent years, there has been a notable increase in the utilisation of ventilatory support among patients facing emergency conditions. Patients requiring ventilator support constitute a population with substantial health needs and demands when in intensive care. Intubation-related ventilator dependency commonly results from the fact that the patient initially requires advanced care to sustain life; therefore, patients usually have long hospital stays and are at a high risk of problems such as ventilator-associated pneumonia and psychological distress.1 The prevalence of ventilator-dependent patients is most striking in hospitals providing tertiary care because they are the centres of advanced medical resources and specialized knowledge. Specifically, patients with acute respiratory insufficiency requiring admission to an ICU appear to be a significant proportion of hospital admissions, which varies from 4% to 13%.2,3

Care for ventilator-dependent patients is multifaceted and very intensive; much of their daily management depends on very dedicated caregivers. A caregiver aids with care receivers regularly, typically not related to payment. Caregivers (usually family members or health workers) take care of various aspects, from basic physical care and drug application to emotional support and advocacy.4 The critically ill, ventilated patient in the intensive care unit is completely dependent on all their needs—medical and nutritional—on the nursing and medical team caring for them. Caregivers often feel overwhelmed and uncertain of the patient’s prognosis in such a difficult and dependent care situation. Though the care provided by caregivers is critical, they frequently face tremendous challenges. These might range from dealing with complex medical details to disruption of daily routines and the emotional burden of seeing a loved one fall sick and trying to battle the situation.5

The unpredictable course of chronic illness significantly heightens emotional distress among family members, especially in intensive care units. Caregivers of ventilated patients must make crucial decisions about healthcare, finances, household management, hospitalization, and end-of-life care. Often, they find it challenging to understand complex medical terminology used by healthcare providers, resulting in increased anxiety and uncertainty. This added burden highlights the need for better support and communication strategies to help caregivers manage their roles effectively amid medical complexities.

The stress experienced by caregivers of ventilator-dependent patients is profound and multifactorial. Studies indicate that caregivers commonly report high levels of anxiety, depression, and caregiver burden, stemming from the relentless demands of caregiving and the emotional toll of witnessing their loved one's illness.6 This burden is exacerbated by the unpredictable course of the patient's condition, the need for continuous vigilance, and the adjustment to a drastically altered lifestyle.7

In a 2017 study conducted in Taiwan, it was noted that a predominant majority of caregivers were married women, a demographic that reported elevated levels of stress and depression. Furthermore, the study revealed that caregivers perceived a decline in their own health status.8 Douglas and Daly reported that the caregivers of long-term ventilator-dependent patients were typically middle-aged women who assumed responsibilities beyond direct patient care. These caregivers also managed household duties while navigating the intricate challenges associated with the patient's medical conditions, mental health, and social interactions.9

Caregivers of ventilator-dependent patients face significant challenges, necessitating empirical research to thoroughly understand their experiences and well-being. Current literature addresses caregiver burden and coping strategies but often omits detailed exploration of specific challenges in tertiary care settings.10 This cross-sectional study seeks to fill these gaps by examining the prevalence of psychological burden among caregivers in a tertiary care hospital. The study aims to inform targeted interventions and support services by identifying unique stressors and support needs, ultimately improving caregiver well-being and patient outcomes.

STUDY DESIGN: This study employed a hospital-based cross-sectional design, utilizing random sampling to select caregivers of patients undergoing ventilator support at Santhiram Medical College, located in Nandyal, Andhra Pradesh.

STUDY SAMPLE: The prevalence rate of hospital ventilator-dependent patients was calculated, and 174 patients were enrolled in this study between February and June 2023. The research encompassed caregivers responsible for patients requiring ventilator support, caregivers of patients ranging in age from 20 to 75, caregivers of any gender, primarily family members who deliver primary care or act as surrogate decision-makers, and those who agreed to participate by providing written informed consent. The research excluded part-time caregivers or assistants who were not involved in providing care for patients on ventilators, family members who were emotionally invested in the patient's care but were not the primary caregiver or surrogate decision-maker(SDM), caregivers of patients who experienced a delay in recovering from post-anaesthetic procedures, caregivers of patients on ventilators for airway protection only, and individuals who declined to give written informed consent. Approval for this study was obtained from the Institutional Ethics Committee (I.E.C./2020/010) and the Institutional Scientific Research Committee (02/December/2019).

A standard support mode for critically ill patients is mechanical ventilation. The primary caregivers were those who made a surrogate decision, who paid for the medical expenses, and who were the family members caring for the patient most of the time.8 The surrogate decision-maker (SDM) is a family member of the patient and is granted authority by the patient to make any medical decisions for him/her, which the patient cannot do at that point in time due to his medical condition. A structured questionnaire will gather socio-demographic information from caregivers who have provided written informed consent. The Perceived Stress Scale was employed to evaluate these caregivers' psychological strain. Furthermore, the intensity of caregiving burden was determined using the Burden Assessment Scale during the study.

STATISTICAL ANALYSIS: The characteristics of the study population were categorical and expressed as percentages. The outcome measures were analyzed using a Chi-square test. The data was analysed using S.P.S.S., version 26.0 (I.B.M., Armonk, NY).

The demographic characteristics of ventilator-dependent patients presented in Table 1 were as follows: the majority were male (105 patients, 60.3%), compared to female (69 patients, 39.7%). The age distribution showed a predominance of patients over 80 years (93 patients, 53.4%), followed by those aged 60-79 years (24 patients, 13.8%), and smaller proportions in younger age brackets. The diagnoses varied, with respiratory conditions being the most common (61 patients, 35.1%), followed by poisoning (28 patients, 16.1%) and neurological disorders (16 patients, 9.2%). Concerning treatment outcomes, the majority of patients were transferred to the wards (109 patients, 62.6%), while 37 patients (21.3%) died during their hospital stay. Financially, a significant portion of patients funded their care themselves (142 patients, 81.6%), with smaller contributions from spouses (19 patients, 10.9%) and other sources.

Table 1: Socio-demographic details of Patients on Ventilator

Table 2. Socio-demographic details of Caregivers

The demographic information for caregivers from Table 2 demonstrated that most were male (84.5%), with females accounting for the remaining 15.5%. The age distribution revealed that 44.3% of caregivers were between 30 and 39 years of age, followed by 31.6% aged 40-49. The majority of caregivers resided in urban areas (59.2%), while a smaller proportion lived in rural (39.1%) and semi-rural areas (1.7%). A significant proportion belonged to nuclear families (77.0%), and 63.2% of caregivers were the patient's son or daughter. The marital status of caregivers was predominantly married (96.6%). Regarding education, 42.5% were graduates, while 16.1% had professional qualifications. The employment status indicated that 85.6% of caregivers were employed. Income levels showed that 47.1% of caregivers earn between Rs 5,001 – 10,000, with 44.8% earning more than Rs 10,000.

Table 4. Correlation between variables and administered scales in Caregivers

The correlations among variables presented in Table 4 suggest that the gender and age of caregivers did not show a significant relationship with the perceived stress (PSS) or caregiver burden. However, caregiver address, education, income, and occupation displayed significant associations with the burden of caregiving. It is noteworthy that caregiver gender and address play a significant role in the caregiving burden, underscoring the significance of demographic and contextual factors in the well-being of caregivers. There was no statistical correlation between the scores obtained on the caregivers' perceived stress care and burden assessment scale, with the p-value being 0.773.

Caregiving for ventilator-dependent patients is a multifaceted responsibility that imposes considerable emotional, physical, and financial strain. The psychological well-being of caregivers, especially in intensive care settings, is influenced by a variety of demographic and contextual factors. This study aimed to explore the prevalence and correlates of caregiver stress and burden in a tertiary care hospital.

This study found no significant association between caregiver gender and perceived stress or burden. Although males comprised the majority (84.5%) of caregivers, both male and female caregivers reported comparable levels of stress and burden. These findings contrasted with those of Tang S et al., who observed that female caregivers, especially those in sole caregiving roles, experienced heightened emotional strain due to the combined pressures of caregiving and household duties.11  Conversely, Płaszewska-Żywko L. et al. reported minimal gender differences when caregiving responsibilities were distributed within joint family structures, emphasising the buffering effect of cultural and familial support.12 The findings in the current study indicated that gender alone might not serve as a reliable predictor of caregiver distress, potentially due to sociocultural factors influencing stress reporting and expression.

This study revealed that caregiver income, occupation, and place of residence were significantly associated with caregiving burden. Those from lower-income groups and those engaged in informal employment roles experienced greater levels of burden. These results aligned with the findings of Etemadifar S et al., who demonstrated that financial instability heightened caregiver strain through limited resources and restricted access to support.13 Similarly, Chu YR et al. reported that caregivers from lower socioeconomic backgrounds were more vulnerable to distress due to inadequate institutional support.14 These findings underscored that socioeconomic disadvantage functioned as a substantial risk factor for increased caregiver burden and stress, warranting targeted intervention.

Caregivers with lower levels of education experienced significantly greater caregiving burden. Those without formal qualifications faced difficulties in understanding medical terminology and navigating caregiving responsibilities. These findings were consistent with the results of Liao J et al., who linked lower educational attainment with reduced health literacy and increased psychological burden.15 Pinto RA et al. similarly identified greater stress among caregivers with limited formal education when caring for patients with chronic illness.16 However, Azoulay et al. observed that even caregivers with higher education levels could experience considerable emotional distress due to heightened awareness of the patient’s clinical prognosis.17 In the present study, education appeared to serve as a protective factor, facilitating better communication, comprehension of care requirements, and emotional regulation.

The occupational status of caregivers was significantly related to the burden experienced. Caregivers engaged in informal labor or unemployed reported higher levels of strain than those with regular employment. These results supported the findings of Im K et al., who noted that job insecurity and lack of leave policies exacerbated caregiver burden.18 Likewise, Kanmani TR et al. observed that employment stability helped caregivers access psychosocial support, contributing to reduced stress levels.19 The findings highlighted the importance of incorporating workplace accommodations and occupational support into comprehensive caregiver assistance programs.

Caregivers residing in rural areas experienced significantly higher caregiving burden than their urban counterparts. This finding was congruent with the results of Płaszewska-Żywko L. et al. and Chu Y. R. et al., who documented that rural caregivers encountered additional obstacles, including geographic inaccessibility to tertiary care, limited healthcare literacy, and fewer supportive services.12,14 Although traditional joint family systems in rural settings could provide emotional backing, these supports did not fully mitigate the challenges related to caregiving in under-resourced regions. These findings highlighted the need for geographically tailored interventions addressing rural caregiving's unique difficulties.

In this study, 71.8% of caregivers reported moderate levels of perceived stress, while 27.6% experienced high stress. These observations echoed those of Kar N and Tripathy S, who found elevated psychological distress among ICU caregivers in low- and middle-income countries.20 Płaszewska-Żywko L et al. similarly identified multiple sources of caregiver stress, including emotional strain, caregiving complexity, and limited communication with healthcare providers.12 This was consistent with findings from Liu et al., who observed substantial psychological, physical, social, and financial burdens among caregivers of ventilator-dependent patients, particularly those providing home care. 21 Conversely, Etemadifar S et al. noted that caregivers who received timely support and education developed effective coping strategies that mitigated stress levels over time.13 The current study's findings suggested that systematic psychological support was vital for reducing caregiver stress during critical illness care.

Despite the prevalence of perceived stress, the majority of caregivers (89.1%) reported minimal burden on the Burden Assessment Scale. This could be attributed to the relatively short duration of mechanical ventilation in most cases, as 69% of patients were ventilated for only 1–4 days. These findings were inconsistent with prior studies, such as those by Chu YR et al. and Im K et al., which reported high caregiver burden in cases of prolonged mechanical ventilation or poor prognostic outcomes.14,18 The low burden observed in this study may reflect the acute nature of care, yet it emphasised the importance of longitudinal monitoring as the burden may intensify with prolonged caregiving responsibilities.

The COVID-19 pandemic has intensified caregiver stress, particularly among ICU caregivers. Caillet et al. reported high incidences of anxiety, depression, and PTSD symptoms among ICU staff during the pandemic, with risk factors including lack of ICU training and previous burnout history.22 these findings highlight the importance of psychological support and training programs for caregivers, especially during health crises.

The psychological burdens identified—particularly caregiver stress—were effectively measured using validated tools, enabling early recognition and potential intervention. The predominance of low burden levels may reflect short caregiving durations, offering a crucial window for preventive support. However, cross-sectional data limited insights into the long-term progression of stress, potentially overlooking cumulative strain. Cultural factors, particularly among male caregivers, may have led to underreporting of distress. The absence of qualitative assessment also restricted understanding of emotional exhaustion and subjective experiences. Importantly, the burden was not evenly distributed; caregivers with low income, rural residence, informal employment, or limited education faced significantly higher strain. These findings underscore the need for continuous monitoring and targeted, equity-focused interventions to address both current and evolving caregiver needs.

In conclusion, this study highlighted the significant psychological burden faced by caregivers of ventilator-dependent patients, particularly in terms of stress, daily disruptions, and financial strain. Caregivers with lower income, limited education, rural backgrounds, and informal employment experienced greater strain, though the overall burden was low due to shorter ventilation periods. These findings underscore the need for targeted interventions, including financial aid, caregiver education, and respite services. Clinical and psychosocial support for caregivers is crucial for the recovery of critically ill patients. Future research should focus on long-term strategies to reduce caregiver stress, particularly for those involved in extended mechanical ventilation

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