The majority of study participants stated that they lacked knowledge of palliative care. The caregivers were only informed about the chronic condition of their relations that they had been enrolled in the palliative clinic. The participants had inadequate knowledge, as there was no initiative by health care workers to provide knowledge and training to the caregivers on how they could take care of the patients. Another study (13) recommended that, interventions by health professionals in providing family members and caregivers with information and skills on how they can provide care may help in boosting patients confidence and improve patient's quality of life. Patients might experience poor outcomes as a result of caregivers' inadequate knowledge on caring for patients under palliative care. This findings from the current study concur with another study (14), who posited that some caregivers had inadequate knowledge on palliative care, which affected them from providing care effectively. Adequate knowledge among care givers enables them understand the disease conditions and pain management strategies that could help the patient feel better (15).
Although family caregivers are thought to receive information about a patient's condition and treatment options from healthcare providers, it was revealed in this study that they were not informed of the condition. This is similar to other studies which have demonstrated that healthcare providers do not provide sufficient information regarding patient’s condition to family caregivers (16, 17). Evidence suggests that providing sufficient information about the patient’s condition and treatment to the families is essential as they play a prominent role in provision of palliative care and other support to the patients (18). Similar sentiments were noted in another study (19) who argued that it is vital for the family caregiver to be knowledgeable about disease conditions and symptoms in order to respond to the patient's sickness and offer the appropriate support and care.
Participants in the present study revealed that lack of information about the patient’s condition and treatment affected their ability to comply with the caregiving needs of the patient. This mirrors findings of Nasrullah (20) who noted that withholding information by the healthcare workers regarding patient care resulted in increased unmet needs of the patients. Therefore, it is evident from this study that most caregivers are not provided with detailed information on their patient’s illness trajectory and treatment.
Participants in this study assumed the roles of providing emotional support, supporting patient’s treatment, providing basic nursing care activities and assisting patients with activities of daily living. This finding is in keeping with that of Reigada (21) who suggested that the role that each caregiver has in the society and in the family system, integrates physical, psychological and spiritual needs of the patient. Also, the caregiver, who is available during the day and night, provides physical, psychological, social and spiritual care, aiming to promote the well-being of the patient, relatives and friends
These findings reflect those of Adejoh (22) who noted that caregivers provide a crucial role in supporting patients with chronic illnesses. The caregivers take care of the majority of medical, physical, financial, spiritual and emotional needs of the care recipients. In comparison with the findings from other studies, while the caregiver role was considered a responsibility, caregivers also appreciated being able to provide such care to their relatives in the home and found this to be rewarding and opportunistic in mending past relationships (23). This implies that this finding is positive and it should be practised.
It was further revealed in the current study that caregivers were there to provide emotional support to the patients. As part of providing emotional support, caregivers were spending much time with the patients to provide encouragement, chat and praying together. Some studies have shown that patients receiving palliative care experience a variety of psychological difficulties, including fear and anxiety, despair, hopelessness and social isolation (24). This demands psychological supportive interventions to improve their wellbeing. Similar findings were reported by Lalani in their study (25) who reported that the family caregivers were providing emotional support to the palliative care patients through prayers, encouragement which assisted patients in managing their emotions, coping with their sickness, and maintaining a sense of connection and belonging.
In this study, participants revealed that they were involved in providing basic nursing care activities to their patients. The participants were actively involved in carrying out basic nursing duties, such as seeing to it that the patients received their medications on time, keeping the area around them clean for both the patients and themselves, wound cleaning and changing colostomy bags. Similar findings were reported in another study (26) whereby family care givers were supporting the palliative care patients by carrying out basic nursing roles such as changing colostomies, giving drugs such as painkillers, and cleaning a catheter's line bags. However ,some studies recommended that caregivers must get training to increase their knowledge, abilities, and general well-being in order to perform fundamental nursing duties efficiently (27, 30, 29). This will eventually improve the standard of care given to patients in need of palliative care.
Participants further explained that their role was to assist patients with activities of daily living such as assisting with bathing, food preparation, feeding, lifting the patients who could not move, and washing for them. Studies from other countries are also in agreement with this finding (30). This means that the caregivers have an essential role in ensuring that the chronically ill patients are clean and provided with the right food at home. (31), recommend holistic care of the palliative care patients which includes bathing, wound cleansing and maintaining nutrition as well as feeding the patients. This would help in enhancing the quality of life of the patient.
This finding broadly supports the study which also concluded that family caregivers should assist their relatives with advanced diseases in activities of daily living and medical management. In their study, they make a case that most of the care provided by guardians is related to maintenance of self-care and prevention of disease complications, which is consistent with other studies (32). This confirms that this finding is positive.
This study’s findings have demonstrated that guardians face challenges when caring for their patients. The guardians are greatly impacted by their patients’ illnesses, thus financially and psychologically. Guardians stated that they lacked money to buy necessities (such as food and transport costs) needed in the care of patients. They found it difficult to source finances as they spent most of their time taking care of the patients. This finding is consistent with the study which noted that family caregivers face financial hardships when taking care of patients which impacted on their quality of life (35, 33). This further ignited more concerns during the course of their roles as caregivers. The current study further found that guardians left their work, farming and businesses which were their main source of income to take care of the sick. Palliative care can be expensive to provide since it often necessitates buying food, medicine, and other supplies (10, 35). This shows that financial challenges may result to poor outcomes to the health of the patient.
However, another study found out that financial burden depends on the socio-economic status of the caregivers (10). This is in relation to economic status; those who are from lower socio-economic groups consistently face the most severe financial burden as they can hardly find enough resources to take care of their palliative patients. In this study, most caregivers attained primary education and were farmers and doing small -scale businesses which predisposed them to limited employment opportunities and finances. Some caregivers were in employment and doing part-time jobs but were engaged with the caring role, hence compromising on their potential to earn money. In order to meet the demands of caregiving, caregivers used the savings from businesses and other means of sourcing income.
Another important finding in this study was that caregivers were psychologically distressed when taking care of their patients. They experienced social isolation and felt stressed which negatively affected their provision of care. Some studies noted that caregivers face emotional and psychological problems when taking care of the patients. These included anxiety, depression, high levels of stress, feelings of grief and distress. Therefore, the longer the care was needed over time, the greater the tension and emotional burden, resulting in diminished quality of life of the carers as a result, some caregivers considered caregiving to be stressful and developed negative reactions towards it (36, 20).
Social isolation by both family members and the community was a challenge that emerged from this study. The guardians explained that some family members as well as community members were isolating themselves from the patients. They were not willing to come closer to them because of the nature of the disease. This is consistent with the study which reported that the patients were experiencing social isolation which had a negative impact on health and well-being of the patient. Both patients and family caregivers may have feelings of increased isolation, which may contribute to distress and impact their quality of life (37). Therefore, these study findings show the importance of considering the psychological distress that caregivers and patients encounter as they navigate the journey of palliative care in the community.
The current study also revealed that most guardians receive support from families, neighbours, communities and church members. Caregivers acknowledged the spiritual support they receive from the church leaders as they were visited frequently and prayed with them which gave them faith and hope. Similar findings were reported in another study (38) who suggested that spiritual beliefs and religious conceptions have a strong influence on the elevation of well-being with consequent reduction of the overload and improvement of the quality of life of the caregivers. Although the condition of the patients increased existential concerns to caregivers, religious support enabled them to adjust their overall well-being through spiritual activities in form of prayers, reading the Bible and participating in religious activities. Caregivers also found strength and comfort with the spiritual support (39). Contrasting views were noted in another study which noted that some caregivers complained of not being supported spiritually. This made them feel abandoned and resulted in caregivers encountering difficulties to provide the needed care (40).
Another important finding in this study was that some family members and the community were of greatest support to the family caregivers as they provided social support. This helped them in coping with the situation which relieved their stress as they had no time for social gatherings and activities. This finding is congruent with that of (20) who stated that family and friends that visit the patient are a source of support. The study further stated that community and family support through psychological support, would minimise depression and anxiety among the patients. Furthermore, help and support from socio-religious organizations was also greatly appreciated by the caregivers.
Findings from this study further reveal that caregivers received financial support from the family, church and community members which enabled them to meet some of the financial needs in taking care for their patients. This finding is consistent with (41) who reported that community members and extended families were a source of support as they provide various kind of support including financial support. The support was appreciated by caregivers in this study. Therefore, this study agrees with (42), that family members play an important role in supporting caregivers who have patients that are on palliative care. Support from other family members can have a positive effect on both patients and family caregivers in their caregiving role.