Perceived Barriers to Symptoms Management among Family Caregivers of Cancer Patients

INTRODUCTION

Family caregivers experience psychosocial distress while caring for cancer patients. Usually, terminally ill patients spend their end stages of life at home being cared for by their families, without formal homecare services.[1] The caregivers experience many barriers to manage the symptoms experienced by their beloved one who is suffering from cancers. Fear of addiction may be the main barrier to cancer pain management.[2] Depression among caregivers is mainly due to the fear of unemployment during caregiving, being the spouse of a patient, burden of caregiving, and disturbance of personal life.[3] Family caregivers (FCGs) experience many difficulties and have increased responsibilities during and after the treatment for cancer.[4] Caregiver's sleep disturbances contribute to depression, anger, and anxiety.[5] The struggle with symptoms and the decreased quality of life (QOL) continue for the cancer survivors and their caregivers throughout their survival.[6] FCGs experience and struggle with many issues in taking care of the cancer patients, especially in symptom management. Increasing the knowledge of caregivers is more important for symptom management among the cancer patients.[7]

MATERIALS AND METHODS

An exploratory survey was done among 768 FCGs of cancer patients who were closely related to the cancer patients (spouse, parents, children, or siblings) aged above 20 years and involved in patient care at least 2–3 h/day. Caregivers who were providing care to the cancer patients diagnosed to be in the 3^rd or above stages of cancer of breast/cervix/head and neck/gastrointestinal tract (GIT)/lung/colorectal cancer and have undergone radiotherapy or chemotherapy or surgery or combination of them were included in the study. Twelve hospitals from the southern part of Karnataka (Manipal, Mangalore, and Bengaluru) were selected using purposive sampling. Of these 12 hospitals, seven hospitals have permitted to conduct the study. From 768 cancer patients, 768 FCGs (1:1) were selected using purposive method from the selected hospitals who fulfill the inclusive criteria. Data were collected using pretested structured interview tool after obtaining permission from the respective hospital administrators as well as consent from the caregivers. The description of the tools are given below.

RESULTS

Out of 768 FCGs, 216 (28.1%) FCGs were in the age group between 31 and 40 years, the mean age of the FCGs of cancer patients was 41.63 ± 11.24 years and 454 (59.1%) were females. Majority, i.e., 678 (88.3%) of them were married, 225 (29.3%) of them had their education until primary school, and 374 (48.7%) of them were housewives [Table 1]. The data related to the relationship of caregivers with the cancer patients show that 350 (45.6%) of them were spouses [Figure 1].

Table 1 Frequency and percentage distribution of family caregivers based on demographic characteristics (n=768)

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Figure 1

Caregivers relationship with cancer patients (n=768)

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Description of perceived barriers to symptom management

This section presents the data of perceived barriers to symptom management while providing care to their beloved ones. For reporting frequency and percentage of perceived barriers to symptom management, frequencies of “a little bit” to “very much” were clubbed together for all the perceived barriers to symptom management. The frequency and percentage distribution of perceived barriers on symptom management among caregivers on all items are given in Tables 2a and b.

Table 2a Frequency and percentage of perceived barriers on symptom management among caregivers (n=768)

Table 2b Frequency and percentage of perceived barriers to symptom management among cancer patients (n=768)

Out of 768 caregivers of cancer patients, most of them 423 (55.1%) had less confidence to manage symptoms, 681 (88.6%) had lack of awareness about pain assessment and management, and 666 (86.8%) of them had the inability to decide how and when to deliver the care. Majority, i.e., 654 (85.1%) of them had financial problems in the family, 750 (97.7%) had lack of knowledge about the disease, and 667 (86.9%) had lack of resources to provide care. Hence, FCGs need to be empowered on the management of cancer care. However, 96.9% (744) of the caregivers expressed that they do not have hesitation to administer the medication as prescribed by the doctors, 746 (97.1%) were willing to provide care, and 748 (97.4%) were not neglecting the cancer patients [Table 2a]. Majority of caregivers of cancer patients (88.8%) had lack of awareness of need of care, 606 (78.9%) had reported that due to hospitalization of patient caregivers could not continue their job/education, and 696 (90.6%) had reported that they were unable to carry out their routine work due to hospitalization of the patients. Seven hundred and eighteen (93.5%) of them perceived that there is no problem with regard to looking after their children, 754 (98.2%) did not have a problem with household work, and 736 (95.8%) had no problem to stay with the patient during hospitalization. Majority, i.e., 756 (98.4%) of them had interest in providing care and 746 (97.1%) had family support [Table 2b].

Association between caregivers' perceived barriers to symptom management with their demographic variables and their patients' disease-related variables

One-way ANOVA was computed to find the association between mean score of caregivers' perceived barriers to symptom management and their age, education, the income of the family and their patients' disease-related variables such as the type of cancer, duration of illness, duration of treatment and stage of cancer. Result shows in Table 3 that the association of caregivers education, income level, and type of cancer with perceived barriers to symptom management is statistically significant (F = 4.982, P < 0.001 and F = 9.101, P < 0.001 and F = 3.12, P < 0.015, respectively). Further, post hoc multiple comparison shows that education level increases with a decrease in perceived barriers (confidence interval [CI] =1.14–14.48, P = 0.003) and those who had income above Rs. 15,000 had lesser barriers than those who had income less than Rs. 2500/month (CI = 3.60–10.95, P = 0.001). Thus, it is interpreted that as the caregivers' educational status and income increases, the perceived barriers to symptom management decrease. FCGs perceived more barriers in caring the patients with cervical cancer when compared to cancer of GIT region (CI = 0.806, 7.75, P = 0.006).

Table 3 Association between caregiver's perceived barriers to symptom management (mean±standard deviation and ANOVA) with their demographic variables and their patients disease-related variables (n=768)

DISCUSSION

It was found in the present study that majority, i.e., 681 (88.6%) of the FCGs had lack of awareness about pain assessment and management, 666 (86.8%) of them had inability to decide how and when to deliver the care, 750 (97.7%) had lack of knowledge about disease, and 70.3% reported that due to hospitalization of the patient the caregivers could not continue their routine education/work/job and nearly 725 (94.4%) of FCGs experienced financial burden due to the disease condition of the patients. These findings are supported by Valeberg et al., (2016)[2] who reported that concerns of both the patients and their FCGs about pain and the use of analgesics may act as barriers to effective pain management. Fear of addiction may be an important barrier to cancer pain management and the patients, and the FCGs need education about the perceived barriers to effective pain management. The financial burden was reported in studies conducted by Covinsky et al.,[8] Grunfeld et al.,[9] Deshields et al.,[10] Song et al.,[11] Yun et al.;[12] Tang;[13] de Córdova et al.,[14] on caregivers of cancer patients. Lukhmana et al.,[15] reported that majority of the caregivers were females (55%), the mean age was 40 years, and most of the caregivers were spouses (57.5%). Forty-three percent of caregivers missed work due to patient's illness, which ranged from missing work for a month (10%) to quit their job. Majority of the caregivers reported minimal burden (56.5%), and 37.5% of caregivers stated mild-to-moderate burden. Yakar and Pinar [16] in their study found that caregivers' life was affected negatively due to the caregiving responsibility and it affected their routine activities (53.3%). They also encountered problems in their work life (30%) and family relationship (15%). Financial problems were contributing factors on QOL. Turkoglu and Kilic,[17] seen in their study as caregiving adversely affects many aspects of the caregivers' life and recommended to train the caregivers to improve their QOL.

CONCLUSION

The result of this study emphasizes the importance of increasing the knowledge by education regarding the cancer symptoms management to the caregivers of cancer patients receiving homecare.

The caregivers experienced many barriers in providing care to their beloved ones, and there is a need to develop measures for effective management of symptoms and to improve QOL of the cancer patients and their caregivers.