Constraints in Seeking Treatment at Public Health Units for Children with Severe Malaria: a District Case Study in Uganda.
Kivumbi George .W, Mortensen Erik.L, Whyte Susan.R, Bybjerg Ib.C.
Draft_16-May-02 Introduction Malaria is still a major cause of death and severe illness among children in many parts
of tropical Africa, Uganda inclusive. It is responsible for between 300 and 500 million clinical cases annually (WHO 2001). Globally between 1.5 million and 2.7 million people die of malaria each year. One million of the deaths are children under five years in sub-Saharan Africa where there is poor or no access to health services. Most of the estimated deaths from malaria each year worldwide are attributed to plasmodium falciparum (WHO 2000; 1). Countries in tropical Africa, Uganda inclusive account for 90% of the total malaria incidence and most of the malaria deaths. In parts of the world where endemicity of falciparum malaria is stable, severe malaria is mainly a disease of children from the first few months of life to the age of five. In Uganda, malaria is the leading cause of morbidity and mortality accounting for 23% of hospital outpatient attendances, 10% of hospital admissions and 12% of in-patient deaths (MOH, 1997). Because of its burden to the population, the control of malaria remains one of the world’s greatest public health challenges (Tanner et al, 1995).
Despite the threat of death from malaria, only a small proportion of children who
develop malaria (perhaps 20%) are brought to formal health services for treatment (Foster 1991; 1995; Snow 1992; Mwenesi 1993; McCombie 1996; Odoi et al 1996; Marsh et al 1999). Even then, the children are usually brought late and given inadequate care. It is estimated that about 2% of these eventually die of malaria (2% of the 20%?). Other studies have shown that some severely ill children are not referred to formal healthcare facilities and they die in the homes. Yet severe falciparum malaria is a medical emergency that must be treated at public health facilities. Many health practitioners believe that many of the deaths from childhood malaria could be averted if mothers identified malaria early, gave prompt and appropriate treatment for uncomplicated malaria, and made early referral of severely ill children to health units (WHO 2000; 3).
Why only a small number of children with malaria are brought to the health unit
belatedly is not clearly understood. The limited amount of information collected to date suggests that this can be attributed to three main reasons: the mother’s delay; insufficient support from family and community; and inadequacies of the healthcare system (Should your discussion of your own results be organized with the same headings – now your headings are “Maternal Psychological Constraints, Economic and Social Constraints, and Institutional Constraints – alternatively – and perhaps better - you could describe the three main reasons corresponding to the three headings). This study was carried out to explore the context in which treatment seeking for children with severe malaria takes place, and to investigate the constraints mothers face in making referral to health units. Methodology
Our exploratory study was carried out in Busia, a predominantly rural district in
southeastern Uganda on the Uganda-Kenya border. It is a new district approximately 250 kilometers east of Kampala that was cut-off from Tororo district in 1997 in response to population growth and political pressure. The district occupies an area of… square kilometers with an estimated population of ……………. projected from the 1991 National Population and Housing Census. In terms of economy, Busia is in the lower middle range compared with other districts of Uganda. Cross border trade and farming are the main
economic activities in the district with increasing use of food as a cash crop. Several studies on the district health profile have been carried out since 1994 under the Tororo Community Health (TORCH) project a longitudinal research project under the DANIDA/ENRECA program. The studies show that the district health situation is relatively poor coupled with a high fertility rate yielding a young population profile and heavy demand for health services by the mothers and children.
Malaria is endemic in Busia according to the Ugandan Ministry of Health, meaning it
is present at a certain level in the population throughout the year. Plasmodia falciparum is the most prevalent parasite in Uganda accounting for more than 95% of the parasites while anopheles gambiae is the main vector of transmission. According to district health records, malaria is the number one cause of morbidity and mortality in the district. It accounted for 40% of the hospital admissions in 1999 although other infectious diseases also contribute to high child mortality rates. The district has some donor programs and NGOs operating in it, some private clinics, drug shops and non-biomedical practitioners. Whereas the district was primarily selected for study because of the presence of a DANIDA project, the social, economic, political, and health service delivery settings provide proto-typical examples of treatment seeking patterns under the Uganda healthcare system.
The study adopted qualitative approaches to data collection, namely, participant
observation (participant observation is not described in the following paragraphs – while this is the case for the other methods of data-collection), focus group discussions, and semi- structured interviews. These were combined with documents and records review. A team consisting of one principal researcher and eight interviewers carried out the research with support from public health researchers at Makerere University and the University of Copenhagen.
Semi-structured interviews were conducted with health workers (nurses, clinical
officers, nursing aides, and other paramedic staff), health managers, community leaders, folk providers, local surgeons, and teachers. Interviews were also conducted with providers associated with non-government organizations and international development agencies. A total of 24 semi-structured interviews were conducted. Semi-structured interviews were mainly conducted in English and all the individuals contacted consented to the interviews.
Sixteen focus group discussions; 10 for women and six for men were held with
mothers, other care providers and fathers. The group discussions selected through convenience sampling aimed at exploring opinions, attitudes, and knowledge held by mothers that regulated their treatment seeking patterns. The number of individuals in focus group discussions ranged from six to twelve. Focus group discussions were conducted in Luganda and Lusamya, the local dialects in the area.
Documents review included a systematic collection and analysis of published and
unpublished material on home treatment of malaria. At the national level, documents were reviewed from the Ugandan Ministry of Health and international development agencies. In the district documents were reviewed at the administrative headquarters, international development agencies, schools, and health centres. The documents included policy guidelines, work plans, memos, and study reports.
Data collection was preceded by a preparatory phase that involved training the
interviewers, translating, testing and refining the data collection instruments. Findings from the pre-test were analyzed and used to adjust and code the research instruments. Other quality control measures included field editing, review meetings, and daily synthesis and verification of data.
Data from focus group discussions and in-depth interviews were both written down
and tape-recorded during the discussions. Immediately after the discussion the facilitators reviewed the discussions to ensure that the written notes gave a full and accurate scenario of the proceedings. In-depth text analysis was then done through coding statements with code words related to key issues of interest using the ‘cut and paste’ method. The analysis was presented in a matrix form to capture and summarise emerging themes and sub-themes regarding treatment-seeking patterns for children with severe malaria.
The Uganda National Council for Science and Technology granted ethical clearance
for the study. In the district, permission was sought from the directors of health services, chief administrative officers, and community representatives. Consent of respondents was obtained before they participated in the study. Mothers with severely ill children were supported to treat their children before being recruited in the study.
Results Maternal Psychological Constraints
Perception and Beliefs
Our informants told us that perception of illness as not severe made mothers delay making referral to health units hoping the child will be well. We were told it was common to first treat children with herbs and pharmaceutical drugs bought from shops or left over during previous illness episodes. Some individuals believed that the child would heal by itself and were reluctant to seek treatment. When the condition of a child deteriorated mothers then took the child to a public health facility, which in most cases was late. We found that perception of illness as witchcrafts, for example, severe malaria manifesting as convulsions that made children talk uncoordinatedly was perceived to be powers of the spirit that could only be treated by performing rituals. Health staff told (delete told or revealed) revealed that the belief that some illness can only be treated locally using local herbs led to non-contact or delay in seeking treatment at health units. Knowledge experiences
We found that apart from convulsions many mothers did know the symptoms that
showed that their child had severe malaria. To individuals in the communities malaria was understood to mean omusuja,omuyaka, esiyendero for Lusamya speakers, and Emidi and Emisujja for the Iteso speakers. A child with malaria had a hot body, was vomiting, was shivering, had dry mouth and almost red. A child with malaria was weak, his or her eye changed color to reddish, the child keeps asking for water to drink and tears coming from the child's eyes. To most mothers these symptoms were normal and could be handled at home. Draft_16-May-02
As a result mothers gave their children with the above symptoms all sorts of drugs on the advice of their husbands, neighbors, or elderly women.
Many mothers revealed that it was common to give their sick children a combination
of Panadol, paracetamol syrup, acetaminophen oral solution, Action, Hedex, Nopen and Junior aspirin. The same happed with sulphadoxine-pyrethamine (SP) and chroloquine. The commonly given brands of SP were Fansidar, Malodar, Falcidin and Kamdar. The commonly given chloroquine brands to children were malaraquin, maxaquin, Delagil, Medquine Syrup and Cosmoquine. The mothers told us they were satisfied giving their children a combination of these drugs. When we asked the mothers whether they were aware that one drug could have different brand names, all did not know. Health workers told us children given such improper treatment developed severe malaria and by the time they were brought to the health unit they could not do much to save the situation. Fear
We were told that fear of the poor reception and services delivered at public health units such as rudeness, abuse and insult by health staff, unavailability of health workers, tedious registration process, laboratory tests, and lack of drugs also made mother reluctant to seek treatment at health units. It was pointed out that some mothers feared going to health units because they never went for antenatal clinics and usually the nurses demand that mothers who take children for treatment must have attended antenatal clinics. Mothers with many children feared moving with many kids including the sick to the health units because the nurses would accuse them for not practicing family planning. It was also evident during our discussions that many mothers who feared humiliation at health units because they lacked proper clothing for themselves and the child were reluctant to seek services at health units. “You know we are not all equal. Some us lack clothes to dress our children smartly. But when we go to health units with shabby babies the health worker harasses us badly. So we fear to carry a naked child to the health worker again when the child is ill." (the fears you describe are certainly psychological constraints – but to the extent they are based on experience with health staff the fears also reflect “institutional constraints” – did you collect any data to illuminate whether this is the case. If so, I think you should include these data in a separate “health staff” section in the institutional constraints paragraph – should such a paragraph not be included in any circumstance?)
Cues to Action
We were told that health units were contacted not because the mother’s expected their
child to be healed, but as a last resort when all other avenues have been exhausted. Mothers and other care providers revealed during discussions and interviews that the main reason for contacting the health unit after trying other sources was to have laboratory diagnosis for malaria in the children. This enabled them confirm whether their child had malaria or not. Health workers indicated that it was common for mothers to leave the health unit without treatment after they had confirmed that their child had malaria. We later established that the main reason why mothers leave the health units or don’t come back for review was that the health units had no drugs and the mothers had to buy the drugs. Since mothers had to incur transport and other costs coming to the health units, they preferred buying the drugs themselves to save on the transport costs. Draft_16-May-02
Our respondents told us that they preferred seeking treatment at government health
unit to non-government health units. This was because they perceived the services at the government unit to be better in terms of laboratory facilities and presence of experienced health workers. As we later established, the main non- government health unit in the district used to offer better services but the services deteriorated when the expatriate doctor who was in-charge left. Economic and Social Constraints Resource constraints
We found that many homes have limited or no financial resources due various reasons
ranging from unemployment to drought and famine. Many told us that because they mainly relied on subsistence agriculture they first waited for the food to grow and then got money to take the child for treatment if it was still alive. This meant that many mothers had difficulties getting the money to take their ill children to health facilities. Many had to strike a balance between taking a child to a health unit or risk having no food in the home as one mother explained. “You may have just 500 shillings (USD 30 cents) with you at the time of the illness. So you cannot take the child to hospital and leave others to starve. The only alternative is to use the local medicine and use money to buy food for the home”. Traditional therapies were cheaper and one could even pay in any form such as eggs, grains, hens, and other domestic items.
Apart from money, we were told that many homes lacked extra manpower to take
over the mother’s daily household chores as she takes care of the sick child. This meant that the mother could not leave the home to take a sick child to the health unit. Or when she took the child she could not afford to spend a night at the unit. Health workers told us that this is the main reason mothers gave for declining admission even in the case of severely ill children.
Constraints in Household Decision Making
We found that many mothers had heavy workload and responsibilities at home such
as digging, looking for food, preparing the food for the family and household chores that make the mother ‘the beast of burden’. Mothers told us that because of this busy schedule and commitments they are usually tired and cannot walk the long distances to health units that are usually far. They told us that this usually forced them to postpone seeking treatment that sometimes led to the deterioration of their child’s health.
Many mothers revealed that their husbands were un-supportive, negligent and
inconsiderate to them even in the case of a sick child in the home, which made them postpone treatment seeking. They gave as an example some men with bicycles who could not carry their children on their bicycles to the hospital but told their wives to walk on foot slowly to the health unit. It was revealed that in cases where men were pestered by their wives to take the child to the health unit, it was the mother who explained to the health staff matters pertaining to the child’s health.
We were told that mothers in-law play a very important role in decision-making
for treatment choices for the sick child. Hence many young mothers who were not on good terms with their mother’s in-law were either not supported or given insufficient support belatedly to have their severely ill children taken to health units for treatment.
Apart from mother’s in-law, it was revealed that elders exercise authority over young
mothers and influence them to seek traditional other than biomedical therapies. Negative Social Influences
It was revealed that some mothers delayed because they were influenced by
experienced mothers to seek alternative options of treatment like going to witch doctors instead of taking to hospital.
We found that lack of cooperation between household members and their neighbors
hindered early treatment seeking for the severely ill children. This was especially when an episode came and there was no money yet the neighbors could have helped with a bicycle or money. Some mothers revealed that because of not knowing (instead of predicting) what would be the reaction of their neighbors or other individuals in the community they took a lot of time before approaching them for help. Others especially men did not have the courage to ask for help from neighbors and wanted to struggle alone to prove or die as a man. It was also pointed out that some men don't allow the mothers to seek help from other people outside their home or even family because they thought this would be exposing their problems to the entire world. Mothers also told us that they feared borrowing because when they borrowed money to take their child to health units their husbands thought they got it from lovers and beat them (is this actually common?)
In villages we found that transport to health unit was a constraint to referral as
mothers had to walk long distances to public health units. Many told us that they did not have bicycles to transport the sick to health units. This made them reluctant to seek treatment at health units. At health units the staff revealed that the units lacked transport to connect regional referral hospitals in case of sudden attacks or referral cases. The district did not have an ambulance and couldn't afford to hire vehicles to take patients to hospital.
High Costs Involved in Seeking Treatment
Interviews, discussions, and records reviews indicated that even with decentralization of
healthcare and abolition of user charges, public health units lack essential drugs. We found that while patients don’t pay for services at public health units, most of the health facilities lack the basic antimalarials like chloroquine, sulphadoxine-pyrethamine, quinine, and antipyretics like paracetamol. Patients interviewed at health units told us that were given prescriptions and told the drugs were not in stock. Therefore the patients had to buy the drugs in addition to hypodermic syringes and needles, finger pricks, IV fluids and others. We found that admission at health units was accompanied with a number of requirements such as
food for the caretakers and transport to move up and down (unclear?). Health staff indicated that the supplies from the district were insufficient to meet the high demand for service hence the health units were without drugs most of the time. Through observation and interviewing we established that many of these drugs and items were sold in kiosks owned by the health staff just near the health unit. Poor Conditions at Health Units (as mentioned above, I think there should be a separate paragraph describing the staff – including their education, salaries and attitudes to the job – and of course to malaria treatment)
At health units health staff admitted that there was low staff motivation and morale
leading to constrained delivery of services at public health units. They revealed that they were poorly remunerated; their salaries delays and some did not have job security. It was later established that the health staff had a heavy workload especially during and shortly after the rainy season when there is usually an influx of patients with malaria. During the malaria season the children wards were overcrowded with some patients sharing a bed, sleeping on the floor, or discharged before they are well. As we observed and were later told by our respondents, the public health units opened late, around 10.00 a.m. This was because the health staff had to tend to their other duties like garden or private clinics. We observed that often mothers with severely ill children came early to the health unit, around 6.00 a.m. or 7.00 a.m. in the morning, but were not able to get services until 10.00 a.m.
Even when the health units opened at 10.00 a.m. there mothers had to line up for
medical consultations, go to the laboratory, wait for the results, come back to the clinicians for diagnosis, and then go to the dispenser to find whether the drugs are available. We found that on average a child brought to the health unit with suspected malaria at around 6.00 p.m. first got treatment at around 12.30 p.m. Health staff however told us that children brought to health units convulsing were given treatment and admitted straight away before laboratory and other investigations. It was apparent in during the discussions that negative attitudes of personnel at the health unit to patients and use of abusive language discouraged mothers to seek treatment at health unit.
Health staff revealed that lack of antimalarial drugs in the health units was a result of
poor planning on the part of the district. The district drug inspector died and the district did not have the funds to hire a qualified replacement in time. A leprosy assistant with no experience in human drugs acted in the office of the district drug inspector with the responsibility of requisitioning drugs for health units. Health staff revealed that this led to lack of appropriate drugs at health units due to a faulty requisition system. They cited the case where many health units were over stocked with condoms and no antimalarial because of poor drug requisitioning by the district. Poor enforcement of policy
Due to poor enforcement of the national drug policy there are many pharmaceutical drugs
readily available over-the-counter. Our informants told us that due to cross-border trade there are all sorts of drugs on the open market from Kenya. The District Assistant Drug Inspector
who was one of our respondents admitted that some individuals were stocking drugs they were not supposed to stock such as injection and Antibiotics. He summed it thus:
“You can’t manage to control these Africans.When you tell them the right thing to do they will think that you are interfering too much in their lives. These days people have become doctors. They always go to health units when they have prescribed wrong drugs to themselves. When you try talk to them, they go away” Draft_16-May-02 Discussion
Our study has shown that delay in seeking treatment for severely ill children can be
attributed to three main reasons: the mother’s delay; insufficient support from family and community; and inadequacies of the healthcare system (here again you have the description from the introduction – I think the description of the three main reasons should correspond with your headings). The poor access to formal health services by most of the population has also been pointed out as a factor hindering referral of severely ill children. This is due to lack of health facilities, long distance traveled to the health units, unavailability of drugs in the facilities and/or the poor quality of services provided.
Health workers lack training tailored to the health needs of the people they serve.
Many have never received refresher training and are not conversant with modern malaria management therapies. Besides health professionals are excluded from consultations while formulating health strategies and policies. The management and remunerations of health workers is wanting. Many health staff are underpaid and unpaid, over-worked and de-motivated. Until these issues are realized, health workers will not achieve their potential.
Even where facilities for referral exist, the mothers may lack the money to take their
children to the health unit. The situation is made more complex because peak malaria transmission usually occurs during or soon after the rainy season, which is also the planting season when most households do not have money at hand. Sometimes, some mothers do not get support from their husbands and their families; some may even be single adolescent mothers. Even without payment for health care at health units, some mothers still do not go for treatment. This is due to reasons ranging from perceived poor quality of services offered at the health units, to social reasons such as lack of clothes.
The complexity of the diverse factors that come into play in seeking treatment for
malaria requires that it cannot be addressed at the individual level alone, but at multiple levels. Finding out the reasons why mothers seek treatment late for their sick children as this study has established is of practical and theoretical importance to malaria control. Since maternal behavioral and social factors are important determinants of treating seeking regarding severe malaria, then malaria mortality can be reduced significantly through health promotion and health education measures. The study has also established that the quality of the healthcare system hinders mothers from seeking treatment for their severe ill children. The policy implication for this study is that to improve mother’s treatment seeking behaviour, one cannot focus on the individual alone because mothers are not isolated individuals, but also take into consideration environmental factors including society’s influence, and the delay of the healthcare delivery system where she could seek help.
Our findings are in agreement with several studies have shown that many mothers
first give their children who have symptoms suggesting severe malaria traditional therapies and/or in combination with over-the-counter drugs instead of taking them to formal health units (Kengeya-Kayondo 1994: WHO 2000: 1). This results in long delays between the onset of symptoms and getting proper treatment in case of severe malaria. It has been advanced that the way in which mothers and other care providers respond to the causes, symptoms, and treatment of malaria may lead to the delay in seeking help outside the home even for a severely ill child (Agyepong and Manderson 1994; Mwenesi 1993; Lubanga et al 1997).
Major public health implications for averting death from malaria that can be drawn
from this study are multifold. First, governments should be committed to achieving equity in health and healthcare for all sections of the population. Alternative healthcare funding options such as healthcare financing should be explored to ensure that population have access to healthcare even when they may not have money at hand. Second, deaths from childhood malaria can only be averted if the services and image at public health facilities is improved. This is because severe falciparum malaria is a medical emergency that must only be treated at public health facilities. Hence public health facilities in districts must be equipped to handle severe malaria. This should be by ensuring that the health units have adequate supplies of providing drugs and necessary supplies such as hypodermic syringes and needles, finger pricks, IV fluids used in the treatment of severe malaria. Staff working conditions such as morale, skills, and motivation should be greatly improved if they are to work efficiently. Third, early recognition of severe illness and seeking prompt treatment is key to averting death from malaria. Mothers have to be taught how to identify danger sign and make immediate referral. They should be educated to take every illness episode seriously as it could result in death. Fourth, not only mothers are to blame for the delays in seeking treatment. Many of the constraints they face in seeking treatment at public health units are beyond their control. They need to be supported to overcome these constraints. Fifth, there is need to invest in programs that empower women to have income such as poultry, brewing, saving societies, and therapy managing groups. Such programs will have a dividend in improving the health of women and their children if they have money at hand during ill. Sixth, there is need to develop rapid malaria diagnostic technology to be given to providers in private clinics so that they can diagnose malaria since they are the first contact points for malaria. (your last paragraph is very strong as it stands – but still I wonder whether you discussion of interventions should be organized along the lines of the three main headings – what can be done to reduce maternal psychological constraints, what can be done to reduce social and economic constrains and what can be done to reduce institutional constraints?)
Acknowledgements This paper is part of a PhD project at the Department of International Health, University of Copenhagen, Denmark by the author. The author greatly acknowledges DANIDA/ENRECA for financial support through the Tororo Community Health (TORCH) project. The PhD project is supervised by Erik Lykke Mortensen, Susan Whyte, and Ib Bygbjerg of the University of Copenhagen, Denmark. Draft_16-May-02
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