Correlation Between Burden and Quality of Life Among Caregivers of Breast Cancer Patients

INTRODUCTION

Cancer remains one of the most prevalent diseases today, with breast cancer being the most common type among females. Research indicates that breast cancer is the second leading cause of cancer-related deaths.^[1] Based on data from the World Cancer Research Fund, breast cancer ranks as the second most frequent cancer. It is the most common cancer in females. In 2022, 23,08,897 females were diagnosed with breast cancer.^[2] As per WHO statistics, breast cancer caused 6,85,000 deaths globally in 2022.^[3] In India, the prevalence of breast cancer has been steadily rising, about 25-31% of all female cancer cases. Most breast cancers are diagnosed later in life, and by the time they are diagnosed, 50% of them have spread locally.^[4] With respect to statistics in India, as per GLOBOCAN 2022 data, breast cancer is the leading type of cancer with 13% among both sexes and all ages, with 1,92,020 new cases.^[5]

Care for breast cancer patients plays a crucial role in their prognosis, and the presence of family members during treatment can offer comfort and emotional support. However, the physical and mental well-being of caregivers significantly influences their ability to provide care effectively^[6] A cancer diagnosis necessitates adjustments within the family, requiring caregivers to juggle patient care alongside their regular responsibilities. This shift in priorities can create significant stress and emotional strain for the caregiver.^[7] As the patient’s condition worsens, caregivers may experience a range of emotions, making it essential for them to manage their mental well-being while maintaining a positive outlook for their loved ones. Uncertainty regarding the illness and its course is a frequent problem that can exacerbate worry and anxiety. The accumulation of stress and emotional burden is often referred to as caregiver burden. Stress can be reduced among caregivers by educating them about the illness, especially if they are doing home-based care. Many caregiving responsibilities, such as administering medication, assisting with daily activities, and wound care, are primarily handled by family members.^[8]

Society places significant demands on caregivers without fully recognising the challenges they endure. When a member of a nuclear family becomes ill, the burden of providing care frequently falls on one person. Ideally, these responsibilities should be shared among family members to prevent overwhelming the primary caregiver, which can lead to an imbalance and the hidden costs associated with caregiving.^[9,10] Research indicates that family support plays a crucial role in determining the quality of life (QOL) of caregivers.

According to the studies, assessing caregiver burden and QOL among those who care for patients with breast cancer is novel because it shows how much caregiving affects caregivers’ QOL and emphasises the need for social support, educational programs, and workplace flexibility to reduce caregiver burden and enhance patient and caregiver outcomes.^[11] Therefore, this study was undertaken to evaluate the caregiver burden and QOL among caregivers of patients with breast cancer.

MATERIAL AND METHODS

A descriptive correlational research study was conducted among primary family caregivers aged 18 to 65, who accompanied breast cancer patients. A total of 85 primary family caregivers (aged 18 to 65) of breast cancer patients undergoing chemotherapy post-mastectomy were included. Exclusion criteria comprised paid, professional, or formal caregivers, individuals with hearing and speech impairments, and those diagnosed with psychiatric disorders. Participants were informed about the study’s purpose, and written consent was obtained. Institutional Ethics Committee approval was obtained (Ref. No. 17/IEC/22/AIMS-77), and the study was registered with CTRI (CTRI/2022/03/040924).

RESULTS

Table 1 provides an overview of the socio-demographic profile of family caregivers. The majority (35.3%) of caregivers belong to the 54–65 age group, with 32.9% aged between 42 and 53. More than half (60%) of the caregivers were females.

Regarding residence, most caregivers (71.8%) live in panchayat areas, followed by 17.6% in municipalities, and 10.6% in corporation areas. 32.9% hold a graduate degree, while 30.6% have completed secondary education. In terms of marital status, a significant 91.8% are married, while 5.8% are unmarried. Most caregivers (90.6%) come from nuclear families, whereas 9.4% belong to joint families. Financially, 75.3% are above the poverty line (APL), and 24.7% fall below it (BPL).

The caregiver-patient relationship is primarily spouse (36.5%) or son/daughter (36.5%), with 18.8% being siblings and 5.8% being second-degree relatives. Occupationally, 36.5% work part-time, while 27.1% are unemployed, and 15.3% have full-time jobs. Concerning external support, 61.2% of caregivers receive support, mostly financial (92.3%), while 38.8% lack external assistance. The caregiving duration is 0–5 months for 94.1% and 6-10 months for 5.9%. Nearly 48.2% of caregivers report wage loss due to caregiving responsibilities. Regarding patient illnesses, 20% have cardiac disorders, 4.7% have CNS conditions, and 27.1% suffer from other illnesses, while 47.1% report no major illnesses. Finally, 50.6% of caregivers have co-morbidities, indicating a significant health impact on those providing care.

The socio-demographic characteristics of family caregivers, the association between caregiver burden with sociodemographic characteristics among the study subjects, the association between caregiver quality of life with sociodemographic characteristics among the study subjects, level of caregiver burden, caregivers’ QOL, reveal a significant negative correlation between the QOL and caregiver burden correlation between QOL and caregiver burden [Figure 1 and Table 1-3].

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Figure 1:

Correlation between quality of life and caregiver burden.

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Figure 1 revealed that 47 (55.3%) participants had a moderate to severe degree of burden, while 33 (38.8%) had mild to moderate levels of burden, and only four (4.7%) had a severe burden.

The study reveals that 74 (87%) study participants had a moderate QOL, 10 (12%) had the best QOL, and one (1.1%) had the least QOL.

Table 2 depicts the calculated Fisher’s exact value of sociodemographic characteristics with age. According to the results, 7% and 10% in the age ranges of 42-53 and 30-41 had a severe burden. The other two age groups did not experience a severe burden, and p < 0.05. About 3.84% of caregivers with a support system faced a severe burden, and 6% of caregivers without a support system had a severe burden (p < 0.05). Moreover, 7% of the group with wage loss and 2% with no wage loss (p < 0.05) faced a severe burden due to caregiving. In terms of co-morbidity, 45% of caregivers without co-morbidities faced moderate to severe burden, and 74% of caregivers with co-morbidity faced moderate to severe (p < 0.05). Hence, the sociodemographic characteristics, such as age, support system, and wage loss due to caregiving, as well as co-morbidities of caregivers, show a significant association.

Table 3 describes the association between the QOL and the sociodemographic characteristics and co-morbidities of caregivers, which indicates a significant association with the QOL.2.3% of the caregivers with a history of co-morbidities had the lowest QOL. And it is statistically significant.

DISCUSSION

The present study shows that there were more female participants (51, 60%) than male (34, 40%), and most were married (91.8%). A similar investigation was carried out in Nigeria. Compared to other age groups, middle-aged people (31-50 years) are considered the most economically active. Globally, those who care for cancer patients are primarily women,^[15] who face increased levels of caregiving stress.^[16] In this study, the majority of the participants are spouses and mothers, 31 (36.4%). Research conducted in Campina Grande/PB reveals similar data.^[17] According to the current study, the caregiver’s wage loss due to caregiving is 8.636 (0.033*), and their co-morbidities, 14.59 (0.021*), affect their QOL and the burden on these caregivers. In these domains, statistical significance was observed. A parallel study in Campina Grande/PB shows that some caretakers require more emotional and physical care than others, despite the samples being representative when those who provide care for patients with various illnesses are involved.^[18]

According to this study, 51 (60%) of the carers were female. Additionally, this study reveals that 10 (12%) of the participants had the best QOL, whereas 74 (87%) had a moderate QOL. According to a comparable study done in Malaysia, 248 (54.6%) of the carers were female. Additionally, we found that the QOL of Malay carers was higher.^[19]

The present study shows an association between caregiver burden with sociodemographic characteristics (supportive system 8.766 (0.035*), emphasising the need to enhance the living conditions of caregivers. A similar study conducted in Korea showed that care providers should concentrate on using more social support services for patients and caregivers.^[20]

In this research, 47 participants (55.3%) experienced a moderate to severe level of burden, 33 participants (38.8%) reported mild to moderate levels of burden, and only four individuals (4.7%) faced severe burden. A related study carried out in India indicates that 70.22% of caregivers for cancer patients experienced a mild-to-moderate level of burden, while 21.38% reported a moderate-to-severe level of burden. The overall caregiver burden was found to be significant, with an average score of 45.76 ± 14.66.^[11,13]

This research indicated a substantial negative relationship between the caregiving burden (CB) experienced by family caregivers of cancer patients and their QOL, revealing that as the CB increases, the QOL of these caregivers significantly declines. Similar research shows that CB among caregivers of cancer patients adversely affects their QOL and leads to a notable reduction. A decrease in caregivers’ QOL can, in turn, impact the quality of care they provide, ultimately influencing the QOL of the patients themselves.^[21] The influence of caregiver workload on QOL among family caregivers of patients with advanced cancer is illuminated by another similar study; the p-value is p < 0.05, indicating statistical significance.^[22]

Other similar study findings show a significant negative correlation between the QOL and caregiver burden (r = - 0.221) (p = 0.042). A similar study conducted in Indonesia showed a negative correlation between family functioning and caregiver burden, r (35) = -0.597 (p <0.05). The caregiver burden of a family member tending to a breast cancer patient decreases with increasing family functioning, and vice versa.^[7] Caregivers’ QOL and burden were shown to be statistically significant and negatively correlated in a related study carried out in Puducherry, India.^[23]

Study findings described that most participants belonged to the age group 54-65 (30%, 35.3). A similar study was conducted in South India, and a total of 209 subjects were included. The older (56%) female (56%) caregivers experienced a moderate to severe load, while the younger (63%) male (52%) caregivers who were employed (55%) saw none to less burden.^[24,25]

An integrative assessment shows that quality declined in response to increased burden. Additionally, this study demonstrates that burden and QOL were negatively correlated (-0.221).^[26]

One of the study’s implications is that we must create the strategies necessary to develop therapies that reduce CB and enhance the QOL for family carers of patients with breast cancer. One of the limitations of the study was study conducted in a single setting.

All the rights, materials, and illustrations that were generated and used in this study were originally submitted by the author. Neither the authors nor the resource institutions revealed any conflicts of interest or competence.

CONCLUSION

Caregiver burden and QOL have a significant correlation. The present study reveals that there is a substantial negative correlation between QOL and caregiver burden. Most of the participants had a moderate to severe degree of burden. Exercise and other measures, like improving the nutritional status, can improve the health condition of the patient. It will directly affect the QOL of the caregivers.