AIDS CARE (2000), VOL. 12, NO. 5, pp. 535–540
Psychosocial and economic aspects of
HIV/AIDS and counselling of caretakers of
HIV-infected children in Uganda
C. N. M. BROUWER,1C. L. LOK,1I. WOLFFERS1& S. SEBAGALLS2
1Health Care and Culture, Faculty of Medicine, Vrije Universiteit, Van der Boechorststraat 7,
1081 BT Amsterdam, The Netherlands &2TASO Centre Masaka, Plot 1–19 Kigamba Road,
PO Box 1679, Masaka, Uganda
Despair or depression lead to dif?culties in reacting to the options and advice given by health workers.
The compliance of the mother also is largely dependent on her acceptance of the HIV status of the
child. Additionally, the belief that the child might die any moment may cause her not to take proper
care of the child anymore. Worries of the caretakers are frequently related to poverty. Counselling of
caretakers at the health centre could and should be an important element in care for HIV-infected
children. Psychological and material support and advice concerning HIV infection, proper childcare
and material problems may empower the caretakers. This may lead to a better follow-up of the child
by health care workers and to increased compliance of and better care by the caretaker, which will
improve life and survival of an infected child.
The knowledge that her child is infected puts a heavy emotional burden on a mother.
Uganda is one of the countries with the highest HIV prevalence rates in the world, with
930,000 HIV-infected people. About 160,000 people have already died as a result of AIDS
(UNAIDS/WHO, 1998). The districts with the highest rates are Kampala, Masaka and Rakai
(Barton & Wamai, 1994; MoFEP Statistics Department, 1992; Nalugoda et al., 1996). Of all
children below 15 years in the rural areas of Rakai and Masaka, 14.8 and 10.4%, respectively,
had lost one or both parents (Kamali et al., 1996; Konde-Lule et al., 1996). In Uganda,
67,000 children are infected and 1,100,000 children are orphaned because of AIDS (UN-
AIDS/WHO, 1998). A considerable number of newborns is infected with HIV through
vertical transmission of the virus, with prevalence rates up to six times higher among orphans
in the age group 0–4 years (Kamali et al., 1996).
Young orphans are often placed with other family members according to the traditional
African patterns of orphan care through kinship and child fostering (Foster et al., 1997);
although this has come increasingly under pressure by the growing number of orphans. They
appear to be extra vulnerable for the factors that increase under-?ve child mortality (Baars,
1994; Foster et al., 1997; Hunter, 1990; Preble, 1990; Thorne, 1997).
Address for correspondence: C. Brouwer, Department of Health Care and Culture, Faculty of Medicine, Vrije
Universiteit,Van derBoechorststraat7, 1081BTAmsterdam, TheNetherlands. Tel:(31)204448266;Fax:(31)20444
8394; E-mail: firstname.lastname@example.org
ISSN 0954-0121 print/ISSN 1360-0451 online/00/050535-06 Ó Taylor & Francis Ltd
C. N. M. BROUWER ET AL.
The economic and psychosocial consequences of HIV/AIDS for the caretakers of
HIV-infected children may be similar to the problems concerning non-infected children
(Ankrah, 1993; Baars, 1994; Hunter, 1990; Konde-Lule et al., 1996), although one might
assume that the impact would be at least greater in HIV-infected children. Few studies
however have been done considering the problems and worries of caretakers of children
infected with HIV (Anyango et al., 1995) nor about counselling of these caretakers (Kaleeba
et al., 1997). HIV-infected parents in general reported feelings of guilt, loss, loneliness,
hopelessness about the future and fear (Crowley, 1995; de Bruyn, 1991; Kuijper et al.,
submitted; Mukisa, 1990).
More knowledge of the problems, worries and needs of the caretakers of HIV-infected
children may improve the care for them as well as for the infected children. Also, it is likely
to improve the follow-up process. This seems to be especially important, since a small study
(Brouwer & Lok, 1997) con?rmed the experience of paediatricians in a hospital setting in
Kampala that a considerable number (about half of the cases of the sample) of HIV-infected
children is ‘lost’ during follow-up, which means that they do not return after one to three
visits for unknown reasons. Counselling of caretakers of HIV-infected children in health care
settings often is short, individual-based and focused on practical advice. The objective of this
study was to explore the problems, worries and needs of the caretakers of HIV-infected
children in Uganda and to explore ways to improve the support given to them.
Materials and methods
As recommended (Dabis et al., 1989; Murray, 1999; World Health Organization, 1989), a
‘combined methods approach’ for qualitative information gathering was used. It consisted of
focus group discussions (FGDs), in-depth interviews with caretakers and with counsellors,
and review of counselling reports.
Focus group discussions
The four FGDs with ?ve, seven, ten and 15 participants (31 female, six male) were all held
in four parishes in Ssembabule sub-district in northwest Masaka. Three FGDs were related
to community activities (e.g. education about growing nutritious foods, buying a cow), one
was held in a community that had just started to be involved in a community programme.
There was no prior selection or training of the participants: all interested attendants of the
community activities were admitted. Translation was done by community workers.
Interviews with caretakers
Eleven individual in-depth interviews were held with eight mothers and three other caretakers
(grandmothers and aunt). Three in-depth interviews were done in Ssembabule during home
visits. Two interviews with mothers of HIV-infected children were done in Case Western
Reserve Institute. Most interviews with caretakers as well as counsellors took place in the
centre of TASO (The AIDS Support Organisation) in Masaka. This centre is af?liated to
Masaka District Hospital, a governmental institution. TASO is a non-governmental organis-
ation of HIV-infected and affected people in Uganda. It provides counselling, social support,
medical and nursing care at seven centres af?liated to district hospitals in Uganda (Kaleeba
et al., 1997; Seeley et al., 1991). The organisation traditionally gives special attention to
counselling including emotion-focused counselling. There has been no opportunity to inter-
view fathers of HIV-infected children.
CARETAKERS OF HIV-INFECTED CHILDREN IN UGANDA
Interviews with counsellors and review of counselling reports
Interviews with eight counsellors and two paediatricians and a study of conversations with
caretakers in 24 counselling reports of TASO completed the picture. Two of the interviews
with counsellors were done in Nsambya Hospital and in Case Western Reserve Institute in
While the in-depth interviews were solely held with caretakers of children infected with
HIV, in the focus group discussions other caretakers also participated. During the interviews
and FGDs, questionnaires were used as guidelines, although the possibility of exploring other
subjects that were suggested by the participants was left open.
The main questions in these interviews and discussions were:
1. What are the problems caretakers meet when taking care of HIV-infected children?
2. What are their worries about, and attitudes and feelings towards children that are
infected with HIV?
To be able to place the information in a broader context and to get to know the socio-econ-
omic background of affected families, home visits were made and observations were done in
the regions of Kampala, Masaka and Rakai.
Often, caretakers ?nd it dif?cult to visit a health service or clinic regularly. Problems that
were expressed by caretakers and con?rmed by counsellors were lack of money for transport,
the caretaker or child being too weak to travel, lack of time and hesitation considering the
usefulness of regular visits. For mothers of HIV-infected children there is another important
restraint. Many of these women are afraid of telling their husbands, their relatives and
community members that they tested HIV-positive. They fear their reactions. Reactions from
relatives and the community vary, seeming to be related to knowledge about AIDS and
opportunities to care for the HIV-infected person.
Some aspects of pre-test counselling are important for the quality of the ‘ongoing’ coun-
selling. As testing a young child for HIV means that the mother is actually tested at the same
time, this has to be explained to her. Secondly, related to the psychological consequences of
the test, the expectations of the caretakers should be explored as well as the reasons they need
to know the HIV status.
From the counselling reports it became clear that certain items have to be discussed with the
caretakers repeatedly. Many caretakers seem not to be able to act upon the options offered
by the counsellors. This may be caused by the lack of money or facilities (like no piece of
land, no fresh water hole, etc.) of the caretakers. On the other hand, some caretakers seem
not to recognise the importance or the use of the measures. It is of much interest that the
response of parents to the advice is closely related to their acceptance of the HIV status of
the child. When a parent does not accept the child’s HIV status, he or she will not be
motivated to comply with the advice given by the counsellor or doctor, nor will recognise the
need to give the necessary care. The readiness of a parent to comply with the advice is also
de?ned by his or her emotional or psychological condition. Especially mothers who are
C. N. M. BROUWER ET AL.
desperate or depressed exhibit great dif?culties in complying with the items that are dis-
cussed. The readiness of a caretaker to return for control or follow-up seems to be de?ned
in a similar way. Denial and despair may prevent caretakers—especially parents—from
adequately seeking (medical) care.
Health of the child
During periods of illness of the child the caretakers are usually very anxious. Sometimes they
express feelings of helplessness with the situation, e.g. when the child refuses to eat.
According to the counsellors, after the mothers hear that their child is infected, they often
think that it can die any moment. Some mothers in the focus group discussions told that they
would not take care of the child anymore if they knew it was infected because it would die
Worries of the caretakers are often related to poverty, like not having the money to buy
medicines, pay school fees or provide proper nutrition. Often a mother fears she will become
weaker or fall sick herself. The inability to care for the children due to illness is one of the
main problems the mother faces. According to some counsellors, the nutritional problems are
mainly caused by ignorance, since most of the time even poor people can afford nutritional
food. Parents often relate good food to milk, meat, eggs and bread, which they cannot afford.
Cheaper foods like beans, soybeans, peas and groundnuts contain proteins and carbohydrates
too. People can grow these foods themselves, as well as fruits.
The medical care the children need at home and in the hospital should be discussed.
Caretakers often have to be convinced to seek medical attention in time; they are often
hesitant and reluctant. The counsellors try to help the caretakers to ?nd proper health care
facilities like nearby clinics or health centres.
Preparing for the future
Many mothers worry about leaving their children, and especially the infected child, behind
after their death. They fear that family members will not be able to take care of their children
as they do, caused by ?nancial problems (which often is the case when children are left with
the grandparents) or the fact that the children are not their own. Sometimes a mother tries
to prepare by saving some money or by building a house. Counsellors can advise her to look
for someone capable of caring of the child and support the start of small income-generating
activities that can be passed over to the caretaker.
Implications for counselling
This study has been done in three districts in Uganda with the highest prevalence of HIV:
Kampala, Masaka and Rakai. It appeared to be often dif?cult for the caretakers to pay regular
visits to a clinic for several reasons. With more counselling and with counselling that is better
related to the problems and worries of the caretakers, it may be more useful for them to come
to the clinic more regularly. Although material problems are more obvious than psychosocial
problems, the care for an HIV-infected child puts a heavy emotional strain on a caretaker.
From this study several factors that should be addressed to achieve effective counselling are
CARETAKERS OF HIV-INFECTED CHILDREN IN UGANDA
· The acceptance of the HIV status of the child and the readiness of the parent to accept
the necessary care for the child and comply with the advice given are closely related.
· The psychological status of the parent. The knowledge that her child is infected causes
a lot of emotional stress in a mother. Mothers who are desperate or depressed
exhibited great dif?culties in complying with the items of childcare that were dis-
· The regular belief that when a child is infected it can die any moment, sometimes
causing the mother to give up hope and to stop caring for the child.
· The fear of what will happen with the children (especially neglect of the infected child)
when she falls sick or dies, which poses a heavy stress on a mother.
· Sources of emotional stress that are related to material problems or poverty, shared by
mothers and other caretakers.
These points implicate that it is important to discover whether it is useful for a mother
to know the HIV status of her child and herself. A lot of attention should be paid to the
consequences of the result of an HIV test; what are the implications for the parents when a
child turns out to be infected and what are the advantages and disadvantages for them to
know the HIV status of their child? It appears very important to explore the emotions and
feelings of a mother as well as her level of acceptance of the situation. Extremely negative
associations and feelings of helplessness lead to avoidance coping and refusal of help
(Meursing, 1997); whereas acceptance and feelings of internal control lead to active and
problem-associated as well as cognitive and emotional coping strategies (Schussler, 1992).
Problems expressed should never be left unattended before dealing with another subject.
The mother’s fear of early death of the child can be met by explaining to her that with
prompt and proper medical treatment, good nutrition and other aspects of health care, a
child can live for quite some years. This is especially important since most children born of
HIV-infected women are tested negative (about 65%) (Bobat et al., 1996; Fowler & Rogers,
1996). Counsellors can partly meet the emotional stress about the future of children by
encouraging mothers to leave tangible things to their children and eventually by assisting in
developing an income-generating activity with the help of which a parent can save some
money. This activity can also be passed on to the future caretaker after the mother has died.
Nutritional counselling is an essential element in the counselling as there still are many
misunderstandings among caretakers concerning good nutrition. Advice ought to be given
about types of food that are cheap and nutritious and that they can grow themselves.
Discussing these items, which mainly concern the mother or the caretaker, should be
added to the regular health care-based counselling. Counselling can be done on problem-
focused coping aimed at altering the source of stress as well as emotion-focused coping aimed
at managing emotional stress (van Woudenberg, 1994). Alternative (traditional) methods like
music, dancing and dreams may be used for communication (Otterstedt, 1994).
Counselling of parents and other caretakers could and should be an important element
in the care for HIV-infected children. It can be given during individual counselling at the
health centre. Although little attention has been paid so far to the psychological problems of
the caretakers, this appears to be a prerequisite for compliance and further counselling. It
may relieve the burden of the caretakers and consequently lead to a better follow-up and
compliance, but also to improved care provided by the caretaker.
 In this article ‘caretaker’ refers to those who take care of orphaned children including the mother.
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