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 Table of Contents  
Year : 2022  |  Volume : 12  |  Issue : 2  |  Page : 198-201

Burden experience by cancer patient caregivers: A cross-sectional study

1 Sumandeep Vidyapeeth Deemed University, Vadodara, Gujrat, and Principal, Teerthanker Mahaveer College of Nursing, Teerthanker Mahaveer University, Moradabad, Utar Pradesh; Professor and Head, Department of Community Medicine SBKS Medical Institute and Research Centre, Sumandeep Vidyapeeth Deemed University, Vadodara, Gujrat, India
2 Department of Community Medicine SBKS Medical Institutions and Research Centre, Sumandeep Vidyapeeth Deemed University, Vadodara, Gujrat, India

Date of Submission26-Aug-2021
Date of Decision01-Mar-2022
Date of Acceptance24-Mar-2022
Date of Web Publication13-May-2022

Correspondence Address:
Shreenath Kulkarni
Sumandeep Vidyapeeth Deemed to be University, Vadodara, Gujrat
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/aihb.aihb_128_21

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Introduction: Cancer is one of the leading causes of death all over the world, estimated by various organisations. It affects the life of the patients as well as their caregivers. Caregivers feel the burden with respect to various factors while caring for a cancer relative. Materials and Methods: A cross-sectional study was conducted during October–November 2020 at the selected hospitals of Bareilly, UP. A total of 34 caregivers were selected for the study with non-probability purposive sampling who were involved in the direct care of cancer patients. Baseline pro forma and family burden assessment tools were used for the data collection. Results: It was found that the majority of the caregiver (58.8%) experience mild-to-moderate burden while caring for the cancer patient. Conclusion: The caregiver of a cancer patient feels the burden. There could be various factors such as financial burden and stressors, along with the health issue of a loved one that could result in caregiver burden.

Keywords: Assessment, burden, cancer patient, caregivers

How to cite this article:
Kulkarni S, Pandit N. Burden experience by cancer patient caregivers: A cross-sectional study. Adv Hum Biol 2022;12:198-201

How to cite this URL:
Kulkarni S, Pandit N. Burden experience by cancer patient caregivers: A cross-sectional study. Adv Hum Biol [serial online] 2022 [cited 2023 Mar 30];12:198-201. Available from: https://www.aihbonline.com/text.asp?2022/12/2/198/345206

  Introduction Top

The International Agency for Research on Cancer estimates that globally, 1 in every five people develop cancer during their life journey, and 1 in every eight men and 1 in every 11 women die because of the disease. These data suggest that more than 50 million people are living within 5 years of a past cancer diagnosis. Ageing populations globally and socio-economic risk factors remain amongst the primary factors driving this increase.[1]

Cancer ranks as one of the leading causes of death, and also it is a significant barrier to increasing life expectancy in every country of the globe. With the estimation from the World Health Organization in 2019, cancer is the first- or second-leading reason of death before the age of 70 years in 112 out of 183 countries and ranks third or fourth in another 23 countries. Cancer's rising prominence as a number one reason for death partially reflects marked declines in mortality rates of stroke and coronary heart disease relative to cancer in several countries.[2]

In India, the projected incidence of patients with cancer among males was 679,421 (94.1/100,000) and among females 712,758 (103.6/100,000) for the year 2020. One in 68 males (lung cancer), one in 29 females (breast cancer) and one in nine Indians can develop cancer throughout their period of a lifetime (0–74 years of age).[3]

They were living with cancer resulted in distress for patients and their family members. Patients suffer from the disease burden, and their caregivers find it hard to ease that suffering while enduring the stress of having a family member with life-threatening disease conditions. Cancer caregivers showed a physical and emotional strain in caring for their loved ones. In addition, many caregivers feel illprepared in dealing with cancer symptoms. Lack of confidence and preparedness to provide the required complex care may elevate caregiver distress. When caregivers' psychological well-being gets affected, patients' well-being also gets affected.[4]

Getting diagnosed with cancer is also recognised as a stressor to the patient and his/her family while the treatment elevates additional anxieties, fears and challenges, and frequently requires the caregiver's direct support. When we compare to non-caregivers, caregivers of cancer patients often experience behavioural, psychological and physiological effects that can lead to various disease conditions. Cancer patients' caregivers reported having to change their lifestyles to provide care, including limiting their free time activities and gathering with friends and relatives. Furthermore, the caregivers of cancer patients prioritise the demands and needs of the cancer patient over their own needs, which reduces the time for maintaining their good nutrition, exercise and other health needs. This results in various health issues among the caregivers of cancer patients, such as insomnia and fatigue, which affect the condition of the patient as well as the caregiver's burden.[5]

De Padova et al. conducted a review study to assess the impact and the burden of testicular cancer on caregivers and concluded that cancer experience affects the patient, as well as the caregiver and also the caregiver plays a vital role in supporting an individual with testicular cancer, providing physical and emotional care.[6] The aim of the cross-sectional study was to assess the burden of caregivers of cancer patients with respect to domains such as psychological well-being, financial stability and intellectual property rights with the patient.

  Materials and Methods Top

A cross-sectional study done on 34 participants were family members of the cancer patients (second stage and above) who were involved in the direct care of the patients in selected hospitals of Bareilly, UP, between October and November 2020.

Data collection tools

Baseline pro forma

It consisted of a tool to collect demographic variables of cancer patients' family members, which includes age, relationship with the patient, education, occupation, income, the number of children, economic and physical contribution in the patient treatment and care.

Family burden assessment

The cancer patient's family burden was assessed by a 5-point Likert scale prepared by the investigator and validated by the experts. It includes five main domains of burden, namely health, psychological well-being, finances, social life and relationship with the patient. The scoring for the items were categorized into never, rarely, sometimes, quite frequently and nearly always with scoring range between 0 to 4 respectively. Interpretation of the score was obtained based on the following range: 0–21 – little or no burden, 21–40 – mild-to-moderate burden, 41–60 – moderate-to-severe burden and 61–88 severe burden. Reliability of the tool was done using the split-half method. The tool was found to be reliable, r = 0.71, and the internal consistency of the tool was done by Cronbach's alpha, i.e., 0.87.

Ethical considerations

The study was approved by the institutional ethics committee, and the consent of each participant was obtained before data collection. In addition, approval and ethical clearance were obtained from the administrative authorities of selected hospitals of Bareilly, UP.

  Results Top

[Table 1] shows the frequency and percentage distribution of caregivers based on background characteristics, and it revealed that the majority (41.2%) of the caregivers were in the age group of ≤30 years, most (82.4%) of them were male, the majority (41.2%) of the caregivers were spouse, most (79.4%) of the caregivers were married, the majority (52.9%) of the participants had primary education, most (32.4%) of the participants were doing the private job, the majority (47.1%) of them had two earners in the family, most (47.15) of the caregivers involved in patients care for around 2 months and the majority (44.15) of the caregivers helped the patients in walking [Figure 1].
Table 1: Frequency and percentage distribution of caregivers based on background characteristics (n=34)

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Figure 1: Pie graph showing the percentage distribution of the caregivers based on their personal contribution in the daily routine of the patient care in the hospital or home

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[Table 2] shows the family burden profile of the caregivers, and it revealed that around 29.4% of them had little/no burden [Figure 2], the majority (58.8%) of them had mild-to-moderate burden, 8.8% of them had moderate-to-severe burden and 2.9% of them had a severe burden. The minimum family burden score was 3 and maximum was 69, and the mean score was 26.4 ± 12.6.
Table 2: Frequency, percentage distribution and descriptive statistics of the family burden scores of the caregivers (family burden profile of the caregivers) (n=34)

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Figure 2: Pie graph showing the percentage distribution of the caregivers based on the family burden level

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  Discussion Top

The current study showed a majority of the participants had mild-to-moderate burdens. There was no significant association found between caregivers' burden and selected demographical variables.

Similar studies were conducted to assess the burden of cancer patient caregivers.

Hartnett et al. conducted a pilot study to assess the level of burden experienced by the primary caregivers of patients with end-stage ovarian cancer and identified variables associated with caregiver burden. The study findings revealed that the most burdensome factors while providing care to the cancer patient were disrupted schedules and financial problems. As financial issues affect caregiver burden, nurses should facilitate interdisciplinary support.[7]

Vahidi et al. conducted a descriptive study to determine various factors associated with caregiver burden among primary caregivers of women with breast cancer in Iran. The study findings revealed that the mean scores of activities of daily living, level of education, gender and financial status were identified as the determining factors of the burden of caregivers.[8]

Lukhmana et al. conducted a cross-sectional study to assess the burden and to determine the predictors of a burden on family caregivers of cancer patients. A total of 200 family caregivers were selected from two hospitals (100 from each hospital) in the National Capital Territory of Delhi with the help of systematic random sampling. Hindi version of Zarit Burden Interview was used for the data collection. The study findings revealed that 113 (56.5%) caregivers reported no or minimal burden, while 75 (37.5%) caregivers reported mild-to-moderate burden, 10 (5%) caregivers reported moderate-to-severe burden, while only 2 (1%) caregivers reported severe burden. Thus, a moderate level of burden was observed among the Family members.[9]

  Conclusion Top

The caregivers of cancer patients experience a burden in mild-to-severe forms, particularly in respect of various factors that could be financial, physical and psychological conditions and personal and social relationships.

A similar type of study can be conducted on a large group of samples, or an interventional study can be conducted to relieve the burden of caregivers of cancer patients.

Financial support and sponsorship


Conflicts of interest

There are no conflicts of interest

  References Top

GLOBOCAN 2020: New Global Cancer Data | UICC; 2021. Available from: https://www.uicc.org/news/globocan-2020-new-global-cancerdata#:~:text=The%20International%20Agency%20for%20Research, of%20a%20past%20cancer%20diagnosis. [Last accessed on 2021 Jun 09].  Back to cited text no. 1
Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram I, Jemal A, et al. Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin 2021;71:209-49.  Back to cited text no. 2
Mathur P, Sathishkumar K, Chaturvedi M, Das P, Sudarshan KL, Santhappan S, et al. Cancer statistics, 2020: Report From National Cancer Registry Programme, India. JCO Glob Oncol 2020;6:1063-75.  Back to cited text no. 3
Hendrix CC, Bailey DE Jr., Steinhauser KE, Olsen MK, Stechuchak KM, Lowman SG, et al. Effects of enhanced caregiver training program on cancer caregiver's self-efficacy, preparedness, and psychological well-being. Support Care Cancer 2016;24:327-36.  Back to cited text no. 4
Bevans M, Sternberg EM. Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA 2012;307:398-403.  Back to cited text no. 5
De Padova S, Casadei C, Berardi A, Bertelli T, Filograna A, Cursano MC, et al. Caregiver emotional burden in testicular cancer patients: From patient to caregiver support. Front Endocrinol (Lausanne) 2019;10:318.  Back to cited text no. 6
Hartnett J, Thom B, Kline N. Caregiver burden in end-stage ovarian cancer. Clin J Oncol Nurs 2016;20:169-73.  Back to cited text no. 7
Vahidi M, Mahdavi N, Asghari E, Ebrahimi H, Eivazi Ziaei J, Hosseinzadeh M, et al. Other side of breast cancer: Factors associated with caregiver burden. Asian Nurs Res (Korean Soc Nurs Sci) 2016;10:201-6.  Back to cited text no. 8
Lukhmana S, Bhasin SK, Chhabra P, Bhatia MS. Family caregivers' burden: A hospital based study in 2010 among cancer patients from Delhi. Indian J Cancer 2015;52:146-51.  Back to cited text no. 9
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