Caregiver attributes and socio-demographic determinants of caregiving burden in selected low-income communities in cape town, South Africa

Informal caregivers are defined as people who provide unpaid care for the aged or for people needing physical, emotional, social and financial assistance with tasks in the home and spend much time and energy for long periods of time [1–3]. Research has shown that the majority of informal caregivers are women [2] and are primarily members of the same family to whom care is given [4, 5]. However, literature suggests that the caregiver may not be living with the care recipient (CR) [6]. This study focused on informal caregivers or family caregivers. The demographic and psychosocial characteristics associated with caregiver distress (e.g. depression, general psychological distress and physical strain) include being a woman, being younger in age, being the patient’s spouse, having a lower socio-economic status, being employed and lacking personal and/or social support [7, 8]. As such, the burdens that caregiving present are multiple and pervasive and often contribute to guilt feelings, worry and grief [9, 10]. In the role, caregiver burden occurs when caregivers perceive difficulty in performing their tasks, or feel overwhelmed by their tasks [11].

Stress Process Model (SPM) was used to examine the socio-demographic and socio-economic determinants of female caregiver burden in Cape Town, South Africa. We examined caregiving burden among the caregivers; and the correlates of caregiving burden among the study participants. The finding of the present study indicates that many socio-economic and demographic determinants interact to increase the caregiver burden in-low income settings in Cape Town, South Africa. Many factors contributing to caregivers’ burden include lack of privacy, sleep disturbance and social life status. On the other hand, physical and finance burden on the caregiver was reported to be least contributor of caregiver burden. A greater proportion of the caregivers were older which was a significant determinant of caregiver burden. Our study shows a significant increase in caregiver burden with age, income level, ADL, chronic diseases, kitchen hygiene and recipient physical health status.

Our finding that low-income caregivers experience more burden than caregivers with higher income is consistent with previous research findings [24, 25]. Moreover, other studies posit in a study of children with serious emotional disturbance, socio-economic status proved to be an important predictor of caregiver stress [26] which is in line with our funding that care recipient with physical health needs worsen caregiver burden. The case of higher income could be due to the primary caregiver having a paid job outside or doing part time job and not always present to give fulltime primary care. Our finding that physical burden is the least reported burden is consistent with recent reports (see [2]). Kim et al. [27] also found small to moderate positive relationships between caregiving-related factors and caregiver burden which collaborated our findings. Though, greater proportion of the caregivers had some form of secondary education, they have higher burden with increasing age which is in contrast with the finding of, Umaru et al. [2] that caregivers education and training is an important factor in order to enhance caregivers’ ability to cope effectively with the brunt of burden of providing care to care recipients who have impairment of physical function. A large proportion of caregivers were single and about one in three caregivers were currently married. This study found that majority of the caregivers earned low-income (i.e. less than R1001 pm). This could be explained by the type of residential area (government subsidized housing settlements for low-income areas earners). Further, this could be the reason for the significant burden experienced by the caregivers in this study, and supported by work of Williams et al. [25] that there is positive relation between income and burden. Empirical evidence in Ghana also showed this relationship (see [8]).

From Pearlin [20] caregiving and its consequences are greatly influenced by the caregiver background characteristics. Analysis herein points to weaker background attributes. This has a negative effect on their ability to evaluate the potential threats by making a primary appraisal that then integrates their judgement regarding the significance of the event. This is consistent with finding that more than half of the caregivers were burdened.

In terms of the caregiving contexts and demands, the findings from this study show that the care recipients needed more assistance in activities of daily living than in instrumental activities of daily living. For number of hours in care provision, about half of the caregivers provided for long hours per week, with half of them in care provision like fulltime job (i.e. providing care for more than 40 h per week). A large proportion was in the role for many years. Only about a quarter of the caregivers were in care for less than a year and almost half of them were in it for more than 3 years. Almost all the caregivers took care of their sisters, grandsons and cousins. About 6 in 10 of the caregivers took care of their cousins. Almost all the caregivers had no access to any form of caregiving supportive programme to help cope with the brunt of caregiving. Receiving support could increase the resources for care provision by the caregiver in the role that could reduce the burden that could have emanated from inadequate resources [8]. The SPM posits that positive outcomes such as psychological and physical well-being occur when adequate coping resources are available to deal effectively with the stressors, whereas negative outcomes such as mental health problems and illness result when stressors outweigh adequate coping resources. From the foregoing analysis, the caregivers were exposed to the stressors without adequate resources to help cope with the brunt of caregiving, hence the negative appraisal of caregiving.

Our study results are consistent with previous work that reported that for perceived physical health, there were ethnic differences for the effect of income, gender, and type of caregiver relationships [28]. The caregivers in higher income bracket were perceived to be physically healthier than those in the lower income bracket. This finding is not surprising that employment status was positively to better caregiver physical health because it collaborates the finding that those caregivers with higher income were more resourced (see [8], for the effect of resources).

With respect to care demands or tasks, the study found that caregivers who were in the provision for fewer years at the time of the interview reportedly had better perceived physical health when compared with the caregivers who were in it for many years. It was however, found that being in the caregiver role providing care for longer hours per week like fulltime job (40 h or more per week) found the care provision as more rewarding in terms of their perceived physical health.

This study found that the female caregivers in the study areas were burdened. They were small to moderate positive relationships between female caregiver burden and the group of burden predictors (age, education level, income status, activities of daily living, chronic diseases, social grants, kitchen hygiene and the physical health of care recipients). These findings are consistent with the work of Kim et al. [27] regarding predictors of caregiver burden in caregivers of individuals with dementia, that reported activities of daily living and/or instrumental activities of daily living, number of hours spent in caregiving per week, use of coping strategies, co-residence, spousal status and caregiver gender as significant (P < 0.05) factors of caregiver burden. Also, Iwata and Horiguchi [29] reported consistent findings.

It has been reported that as the caregiver engages in instrumental activities in an effort to provide care to the care recipient, such activities can interfere with other aspects of his or her life, including relationships with other family members, personal privacy or work-related aspects, which could potentially result in stress burden [24, 29, 30]. A positive relationship between time in assisting with activities of daily living and objective burden has also been posited [30]. However, the results established statistically significant correlations between caregiver burden and population group, employment status and number of hours they spent in care per week. The literature suggests that caregiving duties affect the level of income resulting from reduced hours of work or stopping work completely [31]. For activities of daily living, other studies show that greater impairment of care recipients is associated with a higher burden of caregiving [27, 32].

Findings from the current study offer important contributions to the realm of caregiving research. In contrast to previous studies, this research showed that a combination of the Stress Process Model and TMSC and inclusion of environmental hygiene factors could offer a more in-depth perspective to informal caregivers’ burden. To our knowledge, this is the first paper in the caregiving burden literature to combine variables from these two models and environmental hygiene factors in order to investigate informal caregivers’ burden. The findings confirm the stress process model that emphasizes the multidimensional nature of the correlates of caregiver burden. The study has shown a general pattern of moderate-higher burden resulting from caregiving. Among the burden inventory items, the highest reported burden was lack of privacy due to caregiving tasks. Overall, physical health of care recipients and social grants showed strong, statistically significant positive correlations with caregiver burden.

This study has shown that the majority of the caregivers were aged, and most of the caregivers had no primary education and earned income less than R1001. The care recipients needed more assistance in activities of daily living than in instrumental activities of daily living.

Also, for physical health of the care recipients, the caregivers’ attributes that are significant in determining caregiver burden, are age, population group, income and employment status. These findings buttress the important relationship between the socio-demographic variables (attributes) of female caregivers and the health of care recipients. Further, physical health of care recipients and social grants showed strong, statistically significant positive correlations with caregiver burden.