5.2 PROFILE OF THE 2004 KIDS QUALITATIVE STUDY ‘CARE’ HOUSEHOLDS
5.2.1 Care situations
cared-for ranged from 23 to 51. Table 5.11 shows the number of caregivers and recipients across age categories.
Table 5.11: Demographic characteristics of caregivers and care recipients
Characteristic Number of caregivers Number of care recipients
Male 1 10
Female 18 7
<20 1 0
20-29 2 6
30-39 2 7
40-49 3 3
50-59 5 1
60-69 5 0
70+ 1 0
The qualitative study focuses on care for people who are receiving much care, but it is important to remember that this is relative – amounts and types of care differ vastly across households, just as the conditions of ill people differ. In one household, an ill person may be bedridden and entirely dependent on caregivers for all their care needs (e.g. the Ndaba household), while another ill person may be going to health facilities on their own to obtain medication and receiving no personal care (e.g. the Shibe household).
It should also not be assumed that caregivers are themselves healthy. Thandazile Dladla indicated that she was HIV-positive and could not always care properly for her ill son, Bulelani. As noted, Sanile Ntini had been sick and died while fieldwork was underway, a few months before Daniel, her ill son, died. Eunice Shibe, already a mother to five young children and caring for her ill husband, was pregnant, undoubtedly experiencing some of the symptoms of pregnancy such as extreme tiredness, nausea etc. In a number of cases caregivers were elderly and themselves not physically strong.
In most households only one ill person was receiving care from a family caregiver, but in some more than one person was receiving care. For a certain time in the Ngidi household there were two people needing care: the mother of the caregiver, 36, and the caregiver’s aunt, Siyanda, 25.
Not only did Thenjiwe the caregiver have to divide her time between care for her aunt and her mother, but her child of one year and her aunt’s child also needed her attention, and this on a 24- hour basis. In the Sibiyo household, apart from the ill person, his niece was also being cared for.
Nonkululeko was severely disabled – she could not talk and could not walk without assistance – and her grandmother, Miriam, was receiving a Care Dependency Grant on her behalf. When the ill person started to require much care, Miriam hired someone to look after Nonkululeko and to help with the domestic chores. Apparently the grant was used to pay this non-household member for her work. It seems the amount of care required was too great for household members alone to provide.
Other households with multiple care needs include the Madondo household in which the
caregiver’s husband was not well; the Dladla household in which the caregiver’s elderly mother had had a stroke; the Cibane household in which the ill person’s HIV-positive daughter needed additional care. In many of the households there were children and this care also had to be fitted in between child care provision. Apart from the Cibane household, four ill people had children who lived with them. What care provision do these children receive and from whom? In the Mbongeni household the ill person’s daughter is looked after by her grandmother. The case of the Ngidi household has already been mentioned. In the Shibe household the ill person’s children are cared for by their mother, the main caregiver. Quite clearly the ill persons’ care needs add to the existing and multiple care needs in these households.
In three households the caring tasks were shared by two caregivers. In each of these cases the dynamics of caring that results from the presence of more than one caregiver and how caring tasks were shared is described. In the Luthuli household Mbeje’s mother and nephew cared for him. The caring tasks themselves were not shared, but instead tasks were divided up between the two caregivers, and these seemed to fall along gendered lines. For instance, readying bath water,
preparing food, doing laundry were all undertaken by Mbeje’s mother. Taking him to health facilities, keeping him company, helping him walk outside, boiling traditional medication and taking it to him, walking him to the toilet and back, emptying his toileting bucket into the toilet were all undertaken by Mbeje’s nephew. No conflict was noted between the two caregivers.
In the Sibiyo household Mzwandile’s mother, Miriam, and sister, Siphokazi, cared for him. Here too there was no conflict between caregivers. From their comments it seems that having more than one caregiver is beneficial to the extent that the two are able to support each other. As in the Luthuli household the caregivers each did different care tasks for the ill person, but here the tasks seemed to be allocated along the lines of skill level and in line with the relationship of the
caregiver and the ill person. Siphokazi was a nursing assistant, and therefore had certain skills in care provision already. Some tasks seem appropriate for a sister to do but not for a mother to do.
These caregivers seem have decided on which tasks each will do, and they seem to share the workload well. For instance, Siphokazi baths her brother, then Miriam rubs his body with
ointment. Miriam gives him his medicine in the morning while Siphokazi gives him his medicine in the afternoon. Miriam keeps him company during the day, while Siphokazi checks on him at night. Siphokazi is the only person who cleans Mzwandile when he is incontinent, and this creates difficulties when he messes himself and Siphokazi is not around.
Finally, in the Mngadi household, Thembi, the ill person, was initially cared for by her daughter, Zodwa, and then her cousin, Gladys, moved from Johannesburg to Urban 2 to assist in care provision. Unlike in the other two households, here most of the care tasks are shared between the two caregivers. Together Zodwa and Gladys rub/massage Thembi, help her to eat and drink, help her to get in and out of bed and turn/move her in bed, take linen off and put it on the bed, wash Thembi’s laundry, accompany her to the private doctor, traditional healer and hospital. Separately Zodwa goes to the pharmacy to get medication for her mother, while Gladys goes to the
traditional healer to do the same. Interestingly Zodwa undertakes personal care tasks alone: she baths, dresses, helps with toileting and gives medication to her mother. Also unlike in the other two households, there is conflict between the two caregivers. At first Zodwa did not want Gladys to care for her mother. Gladys indicates that Zodwa is not always co-operative with regard to the
care that needs to be given to Thembi and that she does not always communicate with Gladys. It is not possible to draw any conclusions from these few care situations about shared caring, nevertheless they provide insight into situations where there is more than one caregiver for an ill person within the home.
In terms of care provision by children, in three households the children were too young to provide care and in a further two households information was not provided on this issue. Of the remaining 13 households, in four the children did not provide any assistance or care provision. In the eight households in which they did, the following tasks were undertaken: often children were sent to the shops to buy odd items for the ill person (e.g. cigarettes, Coca Cola); also frequently
mentioned were children being sent to fetch something and bring it to the ill person (e.g. water or food).
As already outlined, in the Ngidi household, Thenjiwe, a child of 16, cares for her mother, her aunt, her child and her aunt’s child. The demands placed on this young girl are extreme, and of deep concern on a number of levels. Apart from Thenjiwe only one child undertook personal care for an ill person. In the Mbongeni household the ill person’s daughter rubbed and massaged her mother. Therefore in the five households in which the ill person had children of his/her own, in only two cases did these (or any other) children assist with actual care provision, seeming to indicate that caregiving remains the domain of the main caregivers who are nearly always adult.
In some households children did other household tasks (for instance, cooking, cleaning, fetching water) which was likely to free up caregivers to care for the ill people. In the Shibe household the children were sent to sell vetkoek that their mother had made because she could not do so.
In only six of the households did the ill person move from an urban to a rural or less urban area in order to receive care. One ill female moved with her daughter caregiver from a metropolitan area to an urban area a few hours away where she received care from her cousin in addition. In five cases the person was a male, and in all instances the person was working before their return. In most cases these households are losing income received before. In four of the five cases the ill
male was cared for by his mother – two mothers are in their fifties and two in their sixties. The ill person’s return did not result in care for more than one ill adult in these households.
Table 5.12 shows the known income to households, and where employment income is not known the type of regular or irregular employment is stated in order to get some idea of the additional type of earnings to study households. While it would be ideal to calculate these financial costs as a proportion of household income, this is not possible for all households as total household income is in many cases unknown. This was information that not all respondents were willing to supply, hence the gaps in information.
Table 5.12: Grant and remittance income to households (Rands), and employment within households
Household
OAP/
DG/
CDG FCG CSG Remit
tance Regular employment Irregular employment Yengwa 740 - 170 - - Traditional healer Sibiyo 2,220 - - - - Nursing assistant
Khubona 740 - - - - -
Luthuli 740 500 340 - Factory door maker - Mfeka 740 - 170 - Welder; community
health worker;
factory worker -
Mncube 740 - - - Security guard Informal food seller Thwala 740 - 340 - - Cultivation work Cibane - - 170 - - Cultivation work Mngadi - - 340 - Factory worker;
vegetable weigher
Traditional healer
Mbongeni 740 - - 1,800 Teacher -
Ngidi - - - - 500 -
Ndaba 1,480 - - - - Selling wattle logs
Madondo 1,480 - - - - -
Shibe - - 340 - - Informal food seller
Tembe 740 - 170 - - -
Dladla 740 - 170 - - -
Note: DG=disability grant, CDG=care dependency grant, CSG=child support grant, FCG=foster care grant, OAP=old age pension
What is striking is the reliance on grant income among study households that receive no other income source, and also the fact that grant income is received in virtually all study households. In most households at least one ‘large’ grant (such as the old age pension or the disability grant) is received, in many households one or two child support grants are received, and in some both. It is however important to remember that the size of grant income is always overestimated relative to
income from other sources, as it is widely known and it is a regular amount, compared to the income from informal economy and agricultural activities and remittances which tends to be understated because it is usually varied, inconsistent and unreliable (Ardington & Lund, 1996;
Lund, 1999).
Finally, it is useful to reflect on the findings from the 2004 KIDS on access to health services among the cared-for. The only assistance from formal caregivers is received outside of the home, with ill people and their caregivers visiting public and private doctors, nurses and traditional healers, often at great financial cost. Although in some cases hospitals fill a gap in provision, this response is ad hoc and not substantial. These family caregivers are in most cases not linked to HBC organizations, usually because such programmes are present in few communities, relative to the extent of need. A considerable number of households in which care is taking place receive no visit from community caregivers, who are present in most communities and most of whom have been trained in aspects of care provision. When visits are received, these occur extremely infrequently, and a definite problem is that there are not enough community caregivers to visit households in need.
The 2004 KIDS also contains information on access to health services. Table 5.13 shows that for almost three-quarters of those who died and for almost half of the ill, a public health facility was the last person or service they consulted. For two-thirds of those who died this facility was a public hospital, a finding which echoes Booysen et al.’s (2003). Moreover, relatively few of those who died (16 percent), and a third of the ill, accessed private health care, mainly private doctors.
Case, Menendez and Ardington (2005) find similarly that 88 percent of adults in their study in rural KwaZulu-Natal sought treatment from a public clinic or public doctor prior to death, and 97 percent had some contact with a public clinic or a private doctor. Further, in households in KwaZulu-Natal relatives and friends play a greater role in HCBC than community caregivers.
Overall, care provision from community caregivers was small (14 percent for the dying, seven percent for the ill), while almost half of the dying and a quarter of the ill received care from a friend, a family member or a neighbour from outside of the household.
Table 5.13: Last person cared-for consulted
Person last consulted Person died (n=246) Person did not die (n=417)
PUBLIC HEALTH FACILITY 71.5 46.7
Government/public hospital 63.8 21.8
Community health centre /government/mobile clinic
7.7 24.9
PRIVATE HEALTH CARE 15.5 33.6
Private doctor 9.8 25.7
Private clinic/hospital 3.3 0.2
Traditional healer 2.4 5.3
Pharmacy 0 2.4
OTHER 1.2 1.9
Visit from HBC programme person 0.4 0
Visit from primary health worker 0.4 0.5
Workplace clinic 0.4 1.4
NO-ONE 11.8 17.7