|Ahead of print publication
Assessment of the perceived stress and burden of family caregivers of the head-and-neck cancer patients at a tertiary care cancer center: A cross-sectional study
S Sathiya Priya, Girish R Shavi, Ranganath Sanga, S Shankar, G Lalithambigai, C Rahila, S Santhakumari
Department of Public Health Dentistry, Vivekanandha Dental College and Hospital for Women, Tiruchengode, Tamil Nadu, India
|Date of Submission||05-Feb-2019|
|Date of Decision||08-Oct-2019|
|Date of Acceptance||20-Oct-2019|
|Date of Web Publication||27-Apr-2021|
S Sathiya Priya,
Department of Public Health Dentistry, Vivekanandha Dental College and Hospital for Women, Tiruchengode - 637 205, Tamil Nadu
Source of Support: None, Conflict of Interest: None
Introduction: Cancer is a major life-threatening disease and has an impact on both patients and their family members. Caring for cancer patients may lead to several levels of stress which may affect their own health as well as their quality of life.
Aim: To assess the perceived stress and burden of family caregivers of head and neck cancer patients (HNC) attending cancer care centre at a tertiary care centre, Tamil Nadu.
Objectives: To assess the perceived stress and the burden among caregivers of patients with head and neck cancer using the Perceived Stress Scale (PSS) and Caregiver Strain Index (CSI) respectively.
Materials and Method: A Cross-sectional study was carried out for a period of three months among the caregivers of head and neck cancer patients at a cancer care centre, Madurai. A total of 200 caregivers were selected by Convenience sampling method. Data was collected using a pretested, self-structured, closed-ended questionnaire by face to face interview method.
Results: The study population consisted of Caregivers aged 21-60 years, mostly females (80%), spouses (54%), employed (57%) and uneducated (66%). Most of the caregivers were from lower socioeconomic status (66%) and those who are providing care for 1 to 6 months were more in number. In this study, 82% of caregivers reported high caregiver burden (CSI ≥7) and 67% of caregivers reported high stress (PSS ≥ 26 - 40).
Conclusion: Caregivers are experiencing significant burden, particularly with respect to their physical and psychological well-being, economic circumstances, social and personal relationships.
Keywords: Caregiver burden, caregivers, head-and-neck cancer, perceived stress
|How to cite this URL:|
Priya S S, Shavi GR, Sanga R, Shankar S, Lalithambigai G, Rahila C, Santhakumari S. Assessment of the perceived stress and burden of family caregivers of the head-and-neck cancer patients at a tertiary care cancer center: A cross-sectional study. J Can Res Ther [Epub ahead of print] [cited 2021 Jun 22]. Available from: https://www.cancerjournal.net/preprintarticle.asp?id=314860
| > Introduction|| |
The prevalence of cancer has increased dramatically over the years at a global level. Demographic, epidemiological transitions and changes in lifestyles have to lead to the emergence of many types of cancers and other chronic oral diseases as a major dental public health problem in India. Among the cancers, head-and-neck cancer (HNC) would become a major life-threatening disease if not diagnosed at an early stage, and it has its impact on both patients and their family members who are providing care.
Caregivers additionally play an important role within the care of patients with cancer. A caregiver or carer is an unpaid or paid member of a person's social network who helps them with activities of daily living. Caring for a loved one with chronic illness may lead to strain even for the most resilient person. Caregiver stress may be due to exhaustion, anger, rage, or guilt ensuing from unmitigated caring for an inveterately sick patient. There are several symptoms that can indicate caregiver burden and stress includes the depression and anxiety, difficulty concentrating, irritability, exhaustion, easy annoyance, sleep disturbances, health problems, substance abuse, lack of interest in social or fun activities, withdrawal from responsibilities or obligations.
Chronic stress can lead to medical issues, including high blood pressure, diabetes, and a compromised immune system. This may reduce the care-giver's life expectancy. As a caregiver they provide support to their loved ones fear, depression and anxiety at the same time, they also experience the same emotions and all these emotions add up and lead to major stress. Thus, assessing the physical and psychological condition of the caregivers is most important to improve their quality of life and positive attitude which in turn will help the patients to cope up with their illness.
Hence, the aim of this study was to assess the perceived stress and burden of family caregivers of HNC patients attending tertiary care cancer centre at Madurai, Tamil Nadu, using Perceived Stress Scale (PSS) and Caregiver Strain Index (CSI), respectively, and to find the association between perceived stress and burden with demographic variables.
| > Materials And Methods|| |
A descriptive cross-sectional study was carried out for 3 months at the tertiary care cancer center, Madurai. A total of 200 family caregivers of HNC patients attending the oncology ward were included in the study. The sample size was recruited by using a convenience sampling technique. The ethical clearance to conduct the study was obtained from the institutional ethics committee and prior permission was obtained from the head of the cancer center before the study commenced. The data were collected after getting consent from the caregivers and the information sheet was provided to them.
The data were collected using a pretested, self-structured, closed-ended questionnaire which consists of four parts which consist of socio-demographics of the family caregivers, patient's clinical details, PSS and CSI, respectively, by face-to-face interview method.
The PSS which was given by Cohen et al. (1988) which is the most widely used psychological instrument for measuring the perception of stress. It has been demonstrated to have satisfactory internal consistency and construct validity., The questions in the PSS ask about feelings and thoughts during the last month. The caregivers stress level was classified according to the scores as low (0–13), moderate (14–26) and high (27–40), respectively.
The CSI was given by Robinson is a screening instrument that can be used to identify the strain of carers, assess their ability to go on caring and to identify areas where support may be needed. It has a reliability coefficient of 0.86 and has good construct validity. It consists of 13 questions are provided, with answers being Yes or No. The score is calculated by summing up all the “Yes” answers. A score of <7 indicates a low burden and score of 7 or greater indicates a high level of burden.
Both the scales have been translated into the local language (Tamil) by the subjects experts as well as the linguistic expert. The PSS and CSI scales had demonstrated good internal (intra-observer) reliability with Cronbach's alpha ranging from 0.82–0.93 to 0.79–0.89, respectively.
The socioeconomic status (SES) was calculated by using the modified BG Prasad scale in 2017 by Consumer Price Index because it can be used in both urban and rural areas and is based on per capita monthly income.
The inclusion criteria were caregivers aged more than 18 years, those who are providing unpaid care and the family member as the main caregiver will be confirmed by the patient.
Family members, visitors but not involved in caregiving, those who are not willing to participate in the study and Temporary caregivers those who are only accompanying the patients to the hospital on that particular day but they are not involved in caregiving were excluded or not regular caregivers were excluded from the study.
The data were analyzed using the Statistical Package for the Social Science software 20.0 version (SPSS Inc., Chicago, Illinois, USA). The Chi-square test was used to find the association between the variables and the burden and the stress scale. The level of statistical significance was kept at P < 0.05.
| > Results|| |
Of 200 caregivers majority (56%) of the caregivers are middle-aged (41–60 years) and the mean age was 45.19 ± 10.85. Among the caregivers' female gender (80%) and married (96%) are more in number. Most of the study participants are from a nuclear type of family (93%), spouse to the patient (54%), uneducated (66%) and those who are providing care for 1–6 months (62%) with lower SES (63%) are higher in number. Almost 94% of them are getting government health insurance [Table 1].
Regarding the patient's details, the mean patient age was 51.9 ± 15, most of them are males (73%) and patients with Stage III cancer (52%). Squamous cell carcinoma (SCC) is the most common type of cancer in this study (72%) with the majority undergoing chemotherapy and radiotherapy than other treatment modalities [Table 2].
On assessing the perceived stress and strain of the study participants more than half of them are experiencing a high level of stress (67%) and burden (82%) [Graph 1] and [Graph 2].
Univariate analysis was performed with the CSI scores which indicates that the caregiver's gender (P = 0.005), relationship with the patient (P = 0.017), diagnosis of patients (P = 0.001), duration of caregiving (P ≤ 0.001), and stage of cancer (P ≤ 0.001) showed statistical significance (P < 0.05). The level of burden is very high among Stage III cancer patients' caregivers and those who are providing care for more than 3 months [Table 3].
|Table 3: Comparison of caregiver’s details and patient’s details with Caregiver Strain Index|
Click here to view
Similarly, the PSS score was analysed with the demographic variables, the results were being statistically significant with caregiver's age (P = 0.021), gender (P = 0.001), occupation (P = 0.004), relationship with the patient (P = 0.004), education (P = 0.039), duration of caregiving (P = 0.001), patient's age (P ≤ 0.001), diagnosis of patients (P ≤ 0.001), and stage of cancer (P ≤ 0.001). As same as the earlier, the very high level of stress was observed in Stage III cancer patients' caregivers, and the level of stress increases simultaneously when the duration of caregiving increases by months [Table 4].
|Table 4: Comparison of caregiver’s details and patient's details with the Perceived Stress Scale|
Click here to view
| > Discussion|| |
The current study shows that most of the caregivers are female, spouse, uneducated, employed. They are experiencing a high level of burden and stress while providing care to their loved one.
In the present study, the mean age of the caregivers is 45.2 ± 10.9. Other studies like Johansen et al. the mean age was 56 years and in the study of Hiremath et al., the majority of the age group of 40–50 years, this reveals that most carers who involves in caregiving are the middle-aged.
In our study, more than half of the participants were female (80%), spouses (54%), married (96%) and from nuclear type family (93%), the reason for their high stress may be due to our societal norms are such that taking care of the diseased spouse is considered the duty of the healthy partner. The burden and stress among these groups of caregivers are high which could be expected to assume more responsibility in terms of taking care of the diseased members in the family. Regarding the family type, Lukhmana et al. in their study suggested that the reason for that would be when one of the family members in a nuclear family falls sick with a disease like cancer, the entire responsibility including domestic household chores, child-rearing, concomitant professional strains, managing finances coupled with the mammoth task of caregiving falls on the otherwise healthy caregiver. On the other hand, the structure of the joint family is such that roles are defined for each member of the family.
A series of studies suggest that caregiver burden can be increased by the length of time as being a caregiver., Cui et al., said that a cancer diagnosis is often unpredictable for both the patient and his family caregiver. When the patient confronts physiological, psychological, and economic issues, his family caregiver experiences increased responsibilities and a variety of problems. Thus, this situation can be distressful and needs adaptation. On the other hand, the progression of the illness and the process of treatments require readaptation and flexibility about the roles and responsibilities within the family.
The epidemiological studies suggested that among the types of HNC, SCC accounts for about 90% and its is the sixth leading cancer by incidence worldwide. In the present study, SCC is the most common type of HNC of about 72%. Regardless of the different types of HNC more than half of the caregivers are experiencing a high level of burden once their loved one was diagnosed with cancer and the results are statistically significant.
The patients with Stage III cancer are more (103/200) than other stages of cancer. The caregivers those who are providing care for these patients are experiencing a higher level of stress and burden this could be because of the caregivers' task of providing care is more because of the patient's terminal stage of disease than the starting stage. Then the burden and the stress level is decreased in the Stage IV cancer patients this may probably due to the increased sample size of Stage III cancer patients or may be the carers were overwhelmed that their loved one is in the fatal stage of the disease or at the end of their lifetime. This study was the first to compare the stage of cancer with the stress and burden level.
In the current study, some patients received single therapies such as surgery, radiotherapy and chemotherapy and some of them received combined therapy also. Even though the results are not statistically significant with the treatment modalities, most of the caregivers are experiencing moderate-to-severe stress and burden. Lukhmana et al., suggested that this might be because while caring for patients receiving both in-patient and day-care, caregivers may have had to spend a lot of time in accompanying patients to the hospital. This may have led to a disruption in their daily routine. Some of the caregivers even had to miss work to accommodate time for their patients, which might have led to a disruption in their daily routine. A large number of hospital visits may also have entailed more financial burden in terms of transportation and meals besides direct treatment expenses. Similar findings have been reported in another study as well. Greimel et al., in his study stated that an in-patient, he/she is taken care of by the formal caregivers such as doctors, nurses, and other paramedic staff, and family caregivers have comparatively lesser role to play. They may not even be required to be physically present with the patient at all times.
It seems that receiving both cancer diagnosis and the process of treatment can be stressful for family members and maybe a reason for greater caregiver burden.
In our study, the participants felt high level of burden (81.5%) and stress (67%) which is higher than the other studies done by Hiremath et al., McPeake et al., Hsu et al. The reason for this high stress and burden could be because of the sociodemographics of the caregivers, such as the majority of the caregivers are female, spouse, employed, and uneducated, but in Hiremath et al. study most of them were males, educated below graduation and homemakers. Another reason for that could be due to the mean age of caregivers which is younger (45 years) than the other studies such as McPeake et al., Hsu et al. and Rani and Banu. In general, older caregivers would have better mental health, well experienced and have less psychological distress when compared with the younger ones.
In another study which was done by Precious et al., shows that nearly half of the caregivers were family members (46%), and the patients itself felt that 68% it was not too hard for their carers to take care of them and 32% felt that it was very hard.
The study was done by Chen et al., results indicated that patients with oral cancer perceived higher levels of care needs in every domain when compared with patients with prostate cancer, large bowel cancer, and melanoma. The top three ranked supportive care needs were health system and information, psychological, and patient care and support needs.
Limitations and recommendations
There are a few shortcomings to this study. Some of them are we used convenience sampling to select research participants and it is a single-center study. Hence, the findings may not be generalizable. Since it is a cross-sectional design the relationship between burden on family caregivers and various factors cited as predictors, could not be delineated in the study. The presence of chronic illness, general and oral health status of the caregivers was not assessed, these also have an impact on their stress and burden and also the caregivers' quality of life, their coping strategies to overcome their stress and burden was not assessed.
We would like to recommend a longitudinal study with large sample size, development of standardized guidelines that address the caregiver assessment, education, and resources; will help in improvement for providing care, provision of referrals to established support organizations for caregivers (e.g., cancer support community, cancer care); collaboration among caregiving, professional, and cancer-related organizations to advocate policy and practice changes for family caregivers would provide better enhancement in nonprofessional care by caregivers, a qualitative research regarding the interaction between patients and carers could be done by interviews to better understand how this dynamic relationship alters with time and counseling centers be set up in all cancer hospitals and appropriate interventions and support groups be formed so as to help the caregivers cope and deal with the wretched multifaceted “burden.”
| > Conclusion|| |
The current study concludes that the caregivers of HNC patients are experiencing a high level of stress and burden while providing care to their loved one with an advanced stage of disease and those who are providing care for a prolonged period of time. This stress level of the caregivers may increases which depend on factors like the caregiver's physical and psychological well-being, economic circumstances of the family, stage of cancer of the patient, duration of caregiving, social and personal relationship with the patient. The findings from this study have important implications for clinical practice as they can help social workers and other health care professionals to better understand the complexity of caregivers challenging situation and needs of support in the early phases of the illness trajectory Recognizing the caregivers as the most important supporter, and the impact of cancer on the lives of the family as a whole is essential in providing optimal support by psycho-educational skills training like coping, communication and problem-solving skills and therapeutic counseling to the caregivers to help them to support them to meet their needs.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| > References|| |
Johansen S, Cvancarova M, Ruland C. The effect of cancer patients' and their family caregivers' physical and emotional symptoms on caregiver burden. Cancer Nurs 2018;41:91-9.
Hiremath P, Mohite VR, Naregal P, Chendake M, Mulani A, More UR. Family burden and stress among caregiver of oral cancer patients at Krishna hospital Karad. Asian J Pharm Clin Res 2017;10:201-6.
Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav 1983;24:385-96.
Mani G, Udayakumar S, Annamalai K, Ramasamy DJ. Perceived levels of stress and its correlates among residents of old age home in Kanchipuram district, Tamil Nadu. Med J DY Patil Univ 2014;7:728-31. [Full text]
Robinson BC. Validation of a caregiver strain index. J Gerontol 1983;38:344-8.
Singh T, Sharma S, Nagesh S. Socio-economic status scales updated for 2017. Int J Res Med Sci 2017;5:3264-77.
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.
] [Full text]
Salmani N, Ashketorab T, Hasanvand S. The burden of caregiver and related factors of oncology patients of Shah Vali hospital. Adv Nurs Midwifery 2014;24:51-71.
Abbasi A, Shamsizadeh M, Asayesh H, Rahmani H, Hosseini SA, Talebi M. The relationship between caregiver burden with coping strategies in family caregivers of cancer patients. Iran J Nurs Res 2013;1:62-71.
Cui J, Song LJ, Zhou LJ, Meng H, Zhao JJ. Needs of family caregivers of advanced cancer patients: A survey in Shanghai of China. Eur J Cancer Care (Engl) 2014;23:562-9.
Kotkamp-Mothes N, Slawinsky D, Hindermann S, Strauss B. Coping and psychological well being in families of elderly cancer patients. Crit Rev Oncol Hematol 2005;55:213-29.
Mishra A, Meherotra R. Head and neck cancer: Global burden and regional trends in India. Asian Pac J Cancer Prev 2014;15:537-50.
Greimel E, Thiel I, Peintinger F, Cegnar I, Pongratz E. Prospective assessment of quality of life of female cancer patients. Gynecol Oncol 2002;85:140-7.
McPeake J, Devine H, MacTavish P, Fleming L, Crawford R, Struthers R, et al.
Caregiver strain following critical care discharge: An exploratory evaluation. J Crit Care 2016;35:180-4.
Hsu T, Loscalzo M, Ramani R, Forman S, Popplewell L, Clark K. Factors associated with high burden in caregivers of older adults with cancer. Cancer 2014;120:2927-35.
Rani MS, Banu N. Stress perceived by the caretakers attending to patients with cancer problems. Int J Sci Res 2017;6:677-8.
Precious E, Haran S, Lowe D, Rogers SN. Head and neck cancer patients' perspective of carer burden. Br J Oral Maxillofac Surg 2012;50:202-7.
Chen SC, Tsai MC, Liu CL, Yu WP, Liao CT, Chang JT, et al.
Support needs of patients with oral cancer and burden to their family caregivers. Cancer Nurs 2009;32:473-81.
Steginga SK, Occhipinti S, Dunn J, Gardiner RA, Heathcote P, Yaxley J, et al.
The supportive care needs of men with prostate cancer (2000). Psychooncology 2001;10:66-75.
Newell S, Sanson-Fisher RW, Girgis A, Ackland S. The physical and psycho-social experiences of patients attending an outpatient medical oncology department: A cross-sectional study. Eur J Cancer Care (Engl) 1999;8:73-82.
Bonevski B, Sanson-Fisher R, Hersey P, Paul C. Assessing the perceived needs of patients attending an outpatient melanoma clinic. J Psychosoc Oncol 1999;17:101-8.
[Table 1], [Table 2], [Table 3], [Table 4]