This study sheds light on the profile of caregivers of cancer patients in a setting where the status of patient caregiver is not formally recognized. In our setting, the status of primary caregiver is either voluntary or by designation. The majority of caregivers in our study were volunteers, which could be explained by the family relationship between them and the patient. Voluntary caregivers generally gave their parent/child or marital relationship as the reason why they volunteered.
Nearly all caregivers knew of their patient’s diagnosis. Awareness of their patient’s illness is an asset for the caregiver, who can increase their knowledge of the disease, ask the care team relevant questions and better identify what is involved and what is at stake in their caregiving role. In this way, the caregiver becomes better able to meet their patient’s expectations. In addition, our study showed that the majority of caregivers surveyed were not aware of the seriousness of their patient’s disease. Their lack of knowledge of cancer could be harmful for the patient, leading to underestimation of the disease and of some aspects of patient management. Good communication between the care team, the caregiver and the cancer patient is of capital importance to guarantee quality care [16, 17].
We found that caregivers took on a variety of roles. In a hospital setting, their main role related to management of care and administrative formalities. In our institution in Burkina Faso, in order to receive care the patient must undertake formalities such as making appointments, settling bills at the payment office, and registering on the patient list. He or she must be able to carry out the paraclinical investigations requested and obtain the drugs and consumables necessary for treatment. This may involve numerous trips within the same hospital or between several hospitals, as well as long waits of which patients may not be capable because of loss of autonomy. Help with administrative formalities thus falls to the caregivers who, in our setting, do this naturally.
The second role reported by caregivers was giving their patient emotional support. Medical consultations or care provision in a hospital environment (chemotherapy, radiotherapy, surgery, support care) can be a source of fear, stress and discomfort. It is important for the patient to be reassured by the presence of a familiar face and to know that they are accompanied and supported . Regrettably, in our study only 30.6% of caregivers were aware of the patient’s need for emotional support.
The third role reported by the caregivers was interpreting during medical consultations. In our environment, educational level is low and there is often a linguistic barrier between the patient and the care team. The caregiver acts as interpreter, translating and explaining what is said, and so supports the care team in their advice and recommendations on treatment and the patient’s lifestyle. To do so, caregivers may need to have a higher educational level than the patients. This was often the case in our study, and may have motivated the caregiver’s volunteering or being designated for this role.
In the home, the principal role taken on by the caregivers was help with domestic tasks. Many patients have total or partial, permanent or temporary loss of independence, so caregivers tend to assist in tasks such as laundry, cooking and housework .
Emotional support is also needed in the home, which is often the place where the patient can express their emotions, fears and apprehensions.
As well as help with domestic tasks and emotional support, there is health care at home to be managed. As our patient group were treated as outpatients, their caregivers became supervisors ensuring that treatments at home were properly carried out. They motivated patient compliance and prevented forgetfulness that would have negatively affected adherence. In addition, caregivers assisted with personal care. Often however, they were not trained for these tasks which require certain skills and specific knowledge of cancer .
In other settings, caregivers were entrusted with various errands for patients who could not carry them out themselves. This increased the workload of caregivers, with possible repercussions on their social relationships, availability to look after their own family and to cope with their own job. Here emotional support takes on a different form. Cancer is a disease that carries stigma, even more so when there are visible physical signs . Support from caregivers becomes extremely important for the patient’s psychological health. The caregiver’s role consists of attenuating these psychological repercussions and acting as a shield that protects the patient from the gaze of society.
We found no relationship between gender, age, salaried status, marital status and the five dimensions of the CRA. On the other hand, parental bond, sharing the same home, and knowledge of the seriousness of the disease were associated with certain dimensions.
The caregiver’s health was less affected when they had no family link with the patient and more affected when there was a parent/child link. As the emotional bond between a child and their ascendants is very strong, the child who is a caregiver could be more sensitive to their parents’ state of health. The caregiver may suffer physically from fatigue, muscle pain or worsening of a pre-existing health condition . This has an impact on the patient’s own state of health, as shown by Grunfeld . However, caregivers tend to conceal or understate their difficulties and needs in relation to those of their sick relative. They do not wish to seem weak or complaining, through fear of giving the impression that they are not properly assuming their caregiving role .
When the caregiver shares a home with the patient, schedule disruption is even greater. All aspects of their life are affected by the caregiving role. Personal and leisure activities take second place and priority is given to care of the patient. Professionally, the caregiver’s repeated absences from work are detrimental. In a number of developed countries, particularly in France, legal measures define and facilitate the role of caregiver to a sick person. Salaried employees who are caregivers have a legal status that enables them to be absent from work to assist an increasingly dependent relative, and this status is not subject to length of job tenure and has no effect on income . We found that the mean score of the lack of family support dimension was significantly higher when patient and caregiver shared the same home. In these circumstances, the attention of the other family members is generally taken up by the patient, who occupies the emotional space. Other family members may no longer perceive the malaise and personal needs of the caregiver, who finds themselves neglected. Lack of family support may lead to a feeling of isolation and abandonment, and the impression that the other family members are avoiding their responsibilities. The feeling of being abandoned, together with the strong psychological demands of their role, can have repercussions on the caregiver’s health. Awareness of the seriousness of cancer was the factor that had an impact on the greatest number of dimensions of the CRA. It had the strongest impact on the health of the caregiver and on their finances, leading them to invest all their resources in the management and treatment of the patient. In our setting where there is no universal health coverage, the cost of cancer treatment is borne entirely by the patient and their family. Knowledge of the severity of the disease raises the awareness of the family and relatives, who all come together in support and contribute financially to the patient’s care. The primary caregiver becomes the main actor in financial management, and their own resources often serve to make up the shortfall. With regard to the caregiver’s own health, knowledge of the seriousness of the patient’s disease makes them psychologically more vulnerable and more prone to social isolation, depression and stress.