QoL of caregivers of patients diagnosed with mental illness
In this study we found that of the 300 participants, 172 (57.30%) had a poor QoL. These results are consistent with the different studies done in Hong Kong and Europe that suggested the QoL of caregivers is poor in comparison with the general population [
7,
12]. QoL research is rare in sub-Saharan Africa [
13], which makes it difficult to find comparable studies among the African population.
This poor QoL of life is probably due to the task of caregiving, which results in additional responsibilities on the caregivers’ daily life, and occupies their time, energy, and attention. This additional responsibility results in high levels of stress that impact negatively on the QoL of the caregivers [
14,
15]. Due to this additional responsibility and high levels of stress, caregivers may fail to have appropriate means of dealing with this added role [
16]. This puts the caregivers at risk of developing psychosocial or physical illness therefore interventions should be put in place to aid them in dealing with their role and thus improve their QoL [
14].
Factors associated with QoL of caregivers of patients diagnosed with severe mental illness
Caregiver satisfaction with health, education level, psychological wellbeing and environment were the four main factors, which were significantly associated with QoL of caregivers of patients diagnosed with severe mental illness.
The caregivers who were dissatisfied with their health were more likely to have a poor QoL. This is consistent with the results of a study done in China which reflected that caregivers sacrifice themselves to care for their patients, resulting in strain on their physical and mental health [
17]. This dissatisfaction in health is influenced by the inadequate time the caregiver spends on their health concerns since most of their time is invested in their role. As caregivers adjust their social lives to the needs of patients diagnosed with mental illness, they usually have concerns about their own health but neglect them therefore their health deteriorates which eventually impacts on their perception of their overall QoL [
18].
It was suggested that people with good health status may have a better QoL [
19] since they are usually satisfied with the state of their health. Those with a low health status are usually dissatisfied with their health since they have anxiety about their own health and the health of their patients.
Professional health care providers can have a significant impact on the health and well-being of caregivers [
6]. Therefore health workers should be vigilant in identifying healthcare problems early in this group so as to manage them adequately. This can be done when the caregivers visit the hospital with their patient or while they are on the inpatient ward. Health care programs can be put in place to raise awareness of the important role of caregivers in management of patients diagnosed with mental illness among health care providers so that they are not ignored during the routine clinic or hospital visits.
The education level of the caregiver was positively correlated with QoL showing that the higher the education level attained by the caregiver, the better their chances of having a good QoL.
These findings are consistent with the findings of studies carried out in Hong Kong and Turkey [
6,
7]. As caregivers attain higher levels of education, they become more knowledgeable and develop more effective skills in managing the demand that comes with their role thus improving their QoL. For example they can be able to read and understand basic instructions required to take care of patients diagnosed with severe mental illness, which makes their role easier. Highly educated caregivers tend to have better paying jobs or sources of income and are able to adequately use their financial and social resources available in their communities to deal with the caregiving burden resulting in better QoL.
The Ugandan education system is comprised of three major levels including primary, secondary and tertiary [
20]. The primary level includes students from 6 to14 years, secondary includes 14 to 19 years and tertiary level includes students from 19 to 24 years. Since basic education is a fundamental human right and a component of wellbeing, the government of Uganda has put in place certain measures to avail education to all citizens. This has been done through introduction of Universal Primary Education (UPE) and Universal Secondary Education. The schools under these programs offer free education for those who may not be able to afford paying for it. This free education leads to increase in number of literate caregivers therefore leading to improvement in QoL.
Concerning psychological wellbeing, the results showed that the lower the score, the lower the QoL of the caregiver. Low scores reflected a poor psychological wellbeing. The caregiving role usually adds responsibilities on the caregivers’ daily life, and occupies their time, energy, and attention [
21]. This results in caregiver stress and strain and predisposes them to development of mental or psychological illness especially if they have genetic predisposition [
14,
16].
The most common psychological illnesses observed among caregivers include depression and anxiety disorders [
6,
22]. Inorder to improve their psychological wellbeing and avoid development of any mental disorders, caregivers require social support or assistance in caring for their relatives or friends that are diagnosed with severe mental illness. This assistance ensures that caregivers are left with enough time and resources to address their own psychological needs [
19]. Psychological wellbeing can be improved through support groups where caregivers are able to share the stressors related to their role so that they can adequately handle their role [
8]. Support groups usually offer instrumental and emotional support. Improved psychological wellbeing results in better QoL of caregivers and they are able to carry out their role so that the patients diagnosed with mental illness can have good health outcomes.
Environment domain score had a positive correlation with QoL of caregivers. The environmental domain was assessed using a number of components which included: financial resources, freedom, physical safety and security, health and social care, home environment, opportunities for acquiring new information and skills, participation in recreation/leisure activities, physical environment and transport. These components may not significantly influence the QoL on their own but have an effect in combination. The significance of the environment’s influence on QoL of caregivers is consistent with a study done in China [
19].
In Uganda, certain sociocultural aspects dictate the caregiving role. The responsibilities of a caregiver are carried out both in the hospital setting and in the community [
8].
While in the hospital after admission of the patient diagnosed with mental illness, the caregiver ensures that the patient’s basic needs are met from feeding to washing clothes, bathing and hygiene. Doctors and nurses utilise the caregivers in administering medication and monitoring the patients. Occasionally when drugs are unavailable in the hospital, the caregiver is incharge of purchasing them from pharmacies or drug shops within the community. While in the community after discharge, caregivers ensure physical wellbeing of the patient by providing the basic needs, protecting them from harm and watching them so that they do not wander and get lost or go missing. Caregivers also ensure that the patients adhere to drugs and go for their follow-up appointments or visits in the mental health clinics. Caregivers also offer emotional and social support to the patients diagnosed with mental illness.
Opportunities for acquiring new information concerning the illness of the patient and how to care for the patient in day to day life is important and it reduces the caregivers sense of strain or burden in their role [
19]. As ones financial resources increase, their ability to afford care and hospitalization plus medication for their patients increases while strain and stress in caring role is reduced. Drug banks have been created in caregiver support groups where money is pooled and drugs are bought in bulk cheaply thus aiding the caregiver role. Therefore caregivers require information, support, good communication with mental health services and adequate financial resources inorder to effectively handle caring for the patients diagnosed with mental illness [
12].