The mean Zarit Burden Interview (ZBI) score of caregiver burden in this population was 39.1 (± 12.5) with a range of 10.4 to 47.3. This finding supports a local study conducted among informal caregivers of breast cancer patients in northern Nigeria (37.1).21 In contrast, a study in Turkey reported lower score (28.4) of caregiver burden among patients with hematological cancer.22 The high prevalence caregiver burden observed in the Nigerian settings could be due to low socioeconomic levels and inadequate medical resources compared with developed countries. The level of caregiver burden was also found to vary depending on the progression of the disease. Informal caregivers of patients with advanced cancer also experienced lower caregiver burden in South England, (18.5) and in studies in Malaysia, (23.3, 26.0) compared to this study.23–25 The patients recruited in these three studies were terminally ill, and as such, caregivers may have reached acceptance of the inevitable end-of-life. This is supported by another study in Ontario where caregiver burden to terminally ill breast cancer patients were significantly lower compared to the initial phase of palliative intervention. (19.4 and 26.2).26
Almost half of the caregivers (47.3%) in this study were found to have severe burden, suggestive of the low functionality of the patients. This result is consistent with previous studies conducted in other parts of Nigeria (Ibadan, Zaria and Calabar) which reported severe burden among informal caregivers.15,27,28 The study in Calabar revealed that their respondents provided care for advanced cancer (stage iii and iv) patients, who had low functionality level and thus the high prevalence of severe burden observed.28
The age of caregiver was found to be significantly associated with caregiver burden. All caregivers who were above 40 years and about half of those between 31 and 40 years experienced severe burden contrary to those 30 years and below. Older caregivers may be less energetic and have frequently co-morbid conditions, resulting in frailty and decreased physical aptitude.29 A study done in Ibadan similarly showed that caregivers older than 60 years of age reported feelings of impaired health and higher burden.15 Other studies have also confirmed age as one of the determinants of burden among caregivers.30,31 Healthcare providers need to evaluate the burden of care for older caregivers and provide necessary assistance to help reduce burden associated with care.
In this study, both genders experienced almost equal level of severe burden. Typically, studies revealed that women experience severe burden more than men, hypothesizing that women encounter consequences of caregiving due to their characteristic engagements in more personal care than men in the caregiving role.15,32,33 Women have also reportedly felt more obligated towards caregiving compared to men when given the task whereas men more often than not receive assistance from others.34
Although caregiver’s relationship to cancer patient was well established as an influencing factor of caregiver burden,29,35,36 but there was no statistically significant association between this relationship in this study. Spouses are typically the primary caregiver to a sick adult partner. Adult children usually function as the secondary caregivers and only step into the main caregiving roles when spouses are indisposed.37 The children of cancer patients and spousal caregivers had higher level of burden compared to other relatives of the patient. The result obtained from this study is in keeping with a similar study done in Ibadan which showed that spousal caregivers had a higher burden.15 Most studies reported that spousal caregivers have a greater burden than adult children caregivers. However, this study found the contrary in keeping a study where adult children caregivers were found to have high levels of depressive symptoms and feeling of abandonment when caring for terminal cancer patients.6,21,28 Adult children have greater burden than spouses possibly because of additional obligations.
About one-third of caregivers in this study did not have other people support them in patient care and therefore, experienced severe burden. A similar finding was obtained from a study done in Zaria among poor caregivers in an African urban setting where the majority of the caregivers did not receive any form of assistance outside the family.27 Currently, due to shortage of medical resources in Nigeria, family members are the major support for caregivers, specifically emotional support. Receiving support from other people with patient care will positively reduce overall caregiver burden, and give caregiver more time for self- care. Social support is considered an important factor for the quality of life of caregivers, influencing their emotional and physical health. Social support had an inverse relationship with caregiver burden.38
All caregivers in this study reported severe burden after a period of 12months duration. Similar to what was obtained in Calabar where more than half of the caregivers at 11 months or above suffered severe burden.28 Caregivers sometimes take away time that could be spent in their paid employment to care for their patient, and represents a “second shift” situation. This reduces caregiver’s rest time, and implies that the more the years/months/hours a person spends on caregiving, the more the burden of care increases.
Coping mechanisms motivates caregivers to provide care to cancer patients despite the challenges they often encounter. The family caregivers mainly preferred religious coping strategies. This is expected considering the fact that Africans especially Nigerians are highly religious. Also, this study was done in the Southwestern region Nigeria, where religious beliefs are among the very important cultural and religious feature of the region of study. A positive relationship and “full reliance on God” gave caregivers hope that He was in control. The results suggest that belief in God helped carers to accept the reality of the situation and cope with the stress. Similar studies proved that caregivers using a religious coping strategy had a higher life satisfaction, 39 experienced lower psychosocial distress and had a higher cancer adaptation.40,41
The mean planning score was high for caregivers. This type of strategy enables caregivers to be more active, establish action plans, use problem-solving skills and accept the problem to find new solutions. This finding may be linked to the age-group and educational status of majority of caregivers in this study. Studies proved that caregivers displaying constructive problem-solving skills experienced less stress and that there was a reduction in the negative stress response.39,42 Similar studies also showed active planning as an effective coping strategy in reducing burden experienced by caregivers of chronically ill cancer patients.41,43 Substance use and venting were the least strategies used by caregivers to cope with the burden associated with care. This could be attributed to the fact that the caregivers were predominantly females who are less likely to use alcohol, drugs and substances.44 Though substance use was adopted in other studies, the result was an increase in psychosocial issues and care burden for caregivers causing bad adaptation periods and decreasing their quality of life.39,45
Limitation of study
This study was among a heterogenous population of cancer patients and did not collect data on the type of cancer or stage of cancer of the patients receiving care by the caregivers. Hence the interpretation of the care burden score must be viewed in this regard. Also, a qualitative aspect to this study may have explored other factors such as how financial status of the dyads may affect the burden experienced by caregivers.