This study includes interviews with sixteen women who had lost a child within the previous two years, observation of approximately a hundred OPD consultations with children, and participatory observation of the route and process that mothers were required to go through with their children at health facilities, as well as interactions between the mothers and health-care professionals. The women we interviewed were between 17 and 43 years old. A few of the women had never attended school; one had completed secondary school, while the rest had between four and seven years of schooling. Half of the women (eight) were not married (three were widows). Most of the households lived from subsistence farming, whereas three women’s husbands had some kind of wage income (a policeman, a watchman and a businessman). One woman did not consult a health facility during the child’s sickness. The more than one hundred OPD consultations observed generally included mothers with young children (presenting with fever, coughs and diarrhoea as the main symptoms) and were of very short duration (2–6 minutes).
We identify four major obstacles to timely and adequate access to bio-medical care: confusions over payment, inadequate referral systems, inefficient organization of health services and communication problems between health professionals and patients.
The first obstacle that causes treatment delay has to do with payment. Despite the Tanzanian exemption policy, which should allow all treatment (consultation and medicine) of children younger than five years to be free, parents are often required to pay for medicines and treatment at the health facility. However, as payments are not fixed but occasional and unpredictable, they might cause delays as the mother first has to provide the money before treatment is initiated. Another important barrier causing delay is that many children are not successfully referred to someone with the required medical expertise. The third obstacle delaying adequate care has to do with the ways in which the health services are organised within the health facility: often the sick child and members of its family are instructed to go to several points in and outside the facility before treatment is obtained. Finally, we identify communicative obstacles, with the health staff consistently using specific forms of interaction which compromise the least educated and poorest families. In the following sections, we present the four main obstacles identified across all data types.
Confusions over payment
The following example illustrates the first obstacle concerning confusions over payment.
Agnes is thirty years old and lives with her husband and child in a village in Mpwapwa District. Agnes has already lost four children, two of whom died in hospital and two at home. The sickness of the last child started three months before it died. The child was two years old and, according to Agnes, initially suffered from homa (fever) and anaemia (see Table ). She took the child to the district hospital, where it received a blood transfusion, with its father as the donor. A week after admission, the child was all right again and was discharged, but after a month its body started to swell, skin sores appeared and its skin started peeling off. Agnes consulted a traditional healer, but the treatment was not a success. Then she went to the nearest dispensary, where she was given some medicine and cream for the sores. However, the child did not improve, so they went back to the dispensary, where it was given a number of quinine injections. There were no convulsions (degedege). They paid 5,000 Tanzania Shillings (Tsh) to the mganga (traditional healer) and a total of Tsh 10,000 for the two visits to the dispensary. The payment was made directly to the clinical officer, and they were told it was for medicine. The husband had to borrow money in order to pay the Tsh 10,000, and the parents still needed to pay Tsh 2,000 back to people who had lent them money. They were not referred to more advanced care at the District Hospital. Subsequently, the child died at home. Amina and her husband were asked to pay 15,000 Tanzania Shillings (Tsh) for medicine at the dispensary when bringing their four months old feverish baby for treatment. The husband went home to sell a few sacks of maize in order to get enough cash. Amina says: ‘while we were at Mpwapwa, our money finished so my husband had to go back home for some more money’. During the illness period, they also consulted a traditional healer. He only demanded 100 Tanzania Shillings as his treatment did not work. The traditional healer advised them to contact the District Hospital. They were not asked for payment at the District Hospital. Maria K had to pay 2,800 Tanzania Shillings for medicine at health centre for the treatment of her five months old baby suffering from fever and degedege. She was accompanied to the health centre by her mother, who managed to borrow the money from acquaintances in the villages. These cases, where family members have to return to the village in order to borrow money for the treatment of the acutely ill children often imply treatment delays of several hours.
Inadequate referral systems
Mothers may be asked to take their children to a higher level of the health system, but they have to organise transport on their own. The district has one or two functioning ambulances, but since money for fuel is short, they are rarely used. Registration data from 2000–2006 show that Mpwapwa referred significantly fewer children to the district hospital compared to Kondoa, the neighbouring district. Furthermore, in Mpwapwa there was a clear tendency only to refer children with burns or severe injuries: children with severe malaria or other infections were rarely referred (National Institute of Medical Research IHRC, CISU: Assessment of Child Mortality in Selected Districts of Tanzania, unpublished, p.23).
In the case of Agnes, the clinical officer did not refer the severely ill child to a higher level of the health-care system. This was also the case for Happiness, a 26-year-old woman who lost her two children (see Table ). The first child was stillborn, and Happiness was told that her second child died of cerebral malaria. The small boy started to develop a high fever: ‘I thought it was a normal fever and I was giving him medicine at home’, Happiness told us. She gave him Paracetamol, Panadol and Septrin syrup. However, the child’s condition worsened, so she consulted the village dispensary, where the nurse advised her to take the child to the government health centre because it seemed to be dehydrated and anaemic. At the health centre the child was examined for dehydration and anaemia, but the test results showed neither. The child developed convulsions and was admitted to the health centre, where they dispensed quinine drips. Its condition improved on the first day, but worsened on the second day. The health staff again prescribed injections. Happiness says: “At that time, the baby could not suck; whatever you gave him, came back’. ‘ […] On the third day, the baby’s condition did not change. I could not give him medicine because whatever I gave, he was vomiting. The baby was just kukema (an unusual sound of a child who is attacked by pneumonia). It persisted until the baby died on the sixth day.’ The child was admitted to the health centre and remained there until his death on the sixth day. We asked Happiness whether the health centre had talked to her about referring them to higher level care at the district hospital. She said: ‘They did not mention such a thing. They kept on prescribing some medicines while the child did not want to swallow.’ Happiness paid a total of about Tsh 10,000 for medicines, syringes and needles. Lucy and her husband had to refer themselves and their child suffering from severe diarrhoea and vomiting to the District Hospital after having knocked on the door of the dispensary for five hours late one evening. The clinical officer was drunk and did not open the door. They then managed to wake up the local pharmacist who provided them with medication. However, the child’s condition did not improve, so Lucy and her husband set out early next morning on a four hours bike ride with the sick child in order to reach the district hospital. The child was admitted and treated at the hospital, but died on the day of admission. It may of course be difficult to judge whether the the child ought to have been referred to a higher level of the health system, since we only hear the mothers’ side of the story. In Hogra’s case for example, it might be difficult to say whether the dispensary delayed adequate treatment. The child was suffering from diarrhoea and vomiting when Hogra contacted the dispensary. A total of five injections with a five-hour interval were prescribed. The child was not admitted; Hogra took the child to the dispensary for the injections. The child died the following day. However, the general picture from our case studies is that dispensaries and health centres only in rare cases refer the acutely ill children to the district hospital.
Inefficient organization of health services
Data from observations of out-patient care for children at the dispensary, health centre and hospital levels suggest that there are several obstacles to the prompt treatment of seriously ill children. The issue of absenteeism is crucial. Mothers seeking help from a health facility may find that the dispensary or health centre has no qualified staff for a period of time. This may be due to training activities, annual leave or illness. The research team visited a health centre with a permanent staff of about fifteen health professionals. Over three consecutive days, the highest ranking member of staff was an assistant dental officer, who was responsible for the ten to fifteen patients admitted as well as the OPD services (with some thirty to forty consultations a day). The assistant medical officer, two clinical officers and a number of nurses were all absent for various reasons.
No triage appears to be performed to ensure fast examination and treatment of the most severely ill children at any of the observed facilities. Often a first come first served principle rules, but on one occasion we also observed a clinical officer come out of the consultation room, collect all the registration booklets (the patient’s health file) and call in patients in an arbitrary order.
Observations at district hospitals show that carers with seriously ill children have to move around extensively inside and outside the hospital premises before the child receives treatment. One young couple arrived at the district hospital one morning at around 11 am. Their child was suffering from fever and breathing very rapidly. After the registration and consultation at the OPD, they were sent to the laboratory for a malaria test. Then they went back to the clinical officer at the OPD and were told that their child would be admitted. Then they had to go to the mother-child-health clinic for medication, gloves and a tube for the blood transfusion and to the hospital pharmacy to obtain other medicine. Arriving at the ward, the nurses sent them for a blood test in order to identify a donor for a blood transfusion for the child. It was determined that the mother could donate blood. She also had an HIV and a hepatitis test. The parents were then sent back to the ward, where the assistant medical officer again asked the husband to obtain additional medicine from the hospital pharmacy, where he was made to wait in a queue. Returning with the medicine, he was now asked to go out and buy some clean drinking water for spoon-feeding the child. Returning to the ward, where the mother and child had now been allocated a bed, the AMO (Assistant Medical Officer) called the MCH to ask for another type of medicine, which the district hospital did not have in stock. The father was sent to a private pharmacy outside the hospital to obtain the medicine, which he had to pay for. At this point, the child had still not received any treatment. While we acknowledge that diagnosis and identification of the correct therapy is a process, it is also clear that its organisation may significantly delay treatment. Furthermore, it confuses the parents. Wishing to show respect to the health authorities, and uncertain about their obligations and the actual procedures at the health facilities, the parents scramble around the facility and its surroundings.
Every morning, the waiting area at the outpatients department in the district hospital at Mpwapwa is crowded with people, especially when the malaria season peaks. One morning in October 2007, we observed the first eighteen consultations carried out by one of the clinical officers. Most of them were very short, as the verbatim translation below illustrates:
CO: ‘What is the problem with the child?’
Mother: ‘The child is suffering from flu and coughing’.
CO: ‘Does the child breastfeed properly?’
Mother: ‘No, she doesn’t’.
CO: ‘I am prescribing the child medicine, and when you arrive home you have to make sure you give her this. Is that OK?’
This case is a good example of magic in medicine, as described by van der Geest: ‘Writing a prescription can best be described as a closing ritual which is intended – and often succeeds – to send the patient away with hope and positive feelings towards his medical problem, himself and the doctor’ [17
]. The positive appreciation of the prescription may conceal both the uncertainty that still exists and the ‘patient’s disappointment about the shortness of the encounter’ [17:140]. The agency of the doctor (or in more general terms the health provider) is extremely important to the patient. The prescription or the clinical officer’s instruction to get a test at the laboratory is appreciated by the patients and seen as a symbol of the doctor’s professional skills and authority. Only one out of the sixteen mothers interviewed, however, recall having received any information about the diagnosis and cause of the child’s illness. The one exception is the case of Howa, whose child was referred to Muhimbili hospital with a heart failure.
However, during the twelfth consultation that morning, the CO seems to be somewhat irritated (the quotes are ad verbatim):
CO: ‘How are you, mother?’
Mother: ‘Fine, but my child does not feel well’.
CO: ‘What’s your child’s problem?’
Mother: ‘The child is sick; she has stomachache and headache’
CO: ‘How old is your child?’
Mother: ‘She is two years old’
CO: ‘Do you boil the drinking water?’
CO: ‘Why? Don’t you know the effects of drinking unboiled water?’
CO: ‘Your family may get diarrhoea, typhoid etc. So you should boil the drinking water. Do you understand me?’
Mother: ‘Yes, I understand’
CO: ‘Does your child have any other problem?’
CO: ‘I saw the child was coughing before, wasn’t she?’
Mother: ‘Yes, she is coughing’
CO: ‘Don’t you know coughing is a problem?’
No answer from the mother
CO: ‘Does she breathe very quickly?’
CO: ‘When did she start the illness?’
Mother: ‘About one month and a half ago’
CO: ‘Does she get diarrhoea?’
CO: ‘Do the child’s legs become big?’
CO: ‘Does she eat properly?’
Mother: ‘No, she doesn’t, she always chooses the foods. When I gave her beans and soup she got diarrhoea, and when I gave her some milk she vomited’
CO: ‘Does she get a problem when she urinates?’
CO: ‘Do you use a mosquito net in your home?’
CO: ‘Why not?’
Mother: ‘There are no mosquitoes’
CO: ‘Go to the laboratory and test the child’s blood. Your child is suffering from malnutrition. So you have to make sure your child is getting a balanced diet. Do you understand?’
Mother: ‘Yes, I do.’
[The mother leaves the room in order to join the queue at the laboratory].
This case shows that, although the clinical officer is very observant, noticing a cough, the mother is spoken to in a somewhat patronising and arrogant manner. In some cases, the patients take on the guilt and feel that the scolding by the health staff is justified. Esther (see Table ), who lost her two-year-old son while she was pregnant with her next child, says: ‘I was not embarrassed; they had a right to be furious because they wanted to help the child’, explaining further: ‘It was because there were some negligence and poverty on our side’. We see this statement as an expression of Grimen’s ‘power, trust risk nexus’. Esther acknowledges the asymmetric relation between herself and the health professionals. She takes on the blame for the death of her child while she from her structurally inferior position, trusts that the health professionals potentially had the skills and knowledge to save her child.
Parents may at times also be met with various demands from service providers which underline the inferior status of patients and add to the unpredictability of seeking care. We have observed parents being asked to fetch fruit juice for an admitted child to drink with the prescribed drugs, and a mother being asked to pay for tea for a provider who felt tired and refused to begin the consultation until he had received it. In another instance, an assistant medical officer reprimanded a father for not having dressed his extremely ill child properly before rushing to the hospital, and he refused to treat the child until it had been dressed.