The management of children with chronic handicap is costly and resources for the care of these children in Tanzania is limited and therefore facilities are minimal. It is estimated that of a thousand life births in Tanzania over 150 will die during the first year of life. Many more will have chronic debilitating illnesses requiring long term care. The correct approach for Health Departments must be to prevent the diseases in children which cause these conditions and also provide appropriate maternal and child health services. This is being done in Tanzania. However the number of children with chronic handicap is not likely to decrease in the near future and these children cannot be ignored.
Although little is known of the full extent of the problem, in this short article certain aspects of chronic disabi1ity in Tanzanian children will be considered with suggestions for management and prevention through provision of appropriate services.
The Handicapped Child
Handicap in the Tanzanian setting is commonly not due to irreversible impairment of bodily function but to continuous exposure to the environmental hazards of infection, malnutrition, social deprivation and ignorance. It is the failure to eliminate these preventable hazards which causes the disability in so many children. The children that survive these hazards are much more likely to suffer growth retardation, developmental delay, intellectual stunting due to lack of stimulation, und the malaise of chronic disease. This form of handicap is common.
However, children with irreversible physical and mental handicaps, are much more vulnerable in this threatening environment and are particularly susceptible in the neonatal period and during the first year of life.
Information on congenital abnormality is scattered and incomplete. Hamza and Segali describe extra digits, hare lip and cleft palate and spina bifida as common abnormalities. 5% of the admissions to the neonatal ward at Muhimbili Hospital during 1974 were congenital abnormalities. 28% of c1ei1ths in the neonatal ward in 1974 were due to congenital abnormalities. In 1975, 4% of the deaths in the neonatal ward at Muhimbili Hospital were caused by congenital disease. The difference between the rates in 1974 and 1975 was probably due to a change in the selection of children admitted to the neonatal ward. Hospital statistics provide only very limited information but epidemiological data on the incidence of chronic handicap in the community are not available.
In ‘The Young Child in Tanzania’ an estimate of the amount of handicap in Moshi District is described (1). (The Kilimanjaro Christian Medical Centre is in Moshi.)
“The number of disabled children in the district is not known but almost every secondary school girl had noticed a few cases in her village. From villages of 100 – 200 households, up to five handicapped were often reported. At Kilema Parish, the parish priest knew 12 mentally handicapped children, 7 epileptic children and 9 lame children.”
The whole of Kilema would have fewer than 5,000 children under seven years of age and a small percent of these children would be known by the parish priest. At Kilimanjaro Christian Medical Centre (KCMC), 188 children with handicap were registered in 1972. Of these, 109 were multiple handicaps, 44 had feet deformities, 22 were polio cases, and 10 had hearing and speech problems. At KCMC 1% of newborn babies were discharged having shown cerebral depression for more than three hours after birth. In 1975 at KCMC, 68 congenital abnormalities were noted among 766 children admitted to the neonatal ward. In order of frequency the most common were talipes, spina bifida, cleft lip/cleft palate and Down’s Syndrome.
There is no reliable information available, but it is likely that the more severe congenital abnormalities such as spina bifida and hydrocephalus do not survive since there is no treatment available. Any neonatal condition which interferes with breast feeding is likely to prejudice the survival of the infant. Thus any neurological deficit which prevents the infant suckling or any physical abnormality such as cleft palate is likely to be a major hazard to the child. Twins so often die due to failure of the mother to provide sufficient breast milk. This leads to bottle feeding and almost inevitably to gastro intestinal infection which carries such a high mortality.
The incidence of chronic ear infection und nutritional and infectious eye conditions in the out-patient clinics and in hospital indicate the likelihood of significant hearing and visual deficit in children in the community.
Severe cerebral palsy is relatively uncommon in Tanzania compared with U.K. since these children fail to survive the first year of life. Paralytic polio cases, on the other hand, are more commonly seen since this affects children later when they have passed through the early hazardous years. Those that survive polio with paralysis present long standing social and medical problems. Polio is endemic in Tanzania, and it is common to see children with the physical stigmas of paralytic polio. Many of these children and adults are found amongst the beggars on the pavements of the towns in East Africa. The age of onset of polio is lower in developing countries and affects the pre-school child.
Epidemics of paralytic poliomyelitis in the developing countries of the tropics and subtropics have shown a three-fold increase in the past ten years. In neighbouring Uganda, the number of severely paralysed patients with poliomyelitis is about 3 per thousand and the total number with residual paralysis following polio is nearer 9 per thousand. The pattern in Tanzania is likely to be similar and poses an enormous problem.
Huckstep summarises the fate of the untreated child with chronic Poliomyelitis, the reason for treatment and the aims of rehabilitation In a developing country. (2)
“Death before maturity is the usual fate of the untreated crawling crippled child in developing countries. Most children with poliomyelitis, however, when upright and walking with supports, or following operation, are accepted by the community, educated by parents and relatives and employable when they reach maturity.
It is more economic to prevent 100 polio cases than to treat one hopelessly crippled child. It is often quicker to straighten 100 deformed limbs by simple subcutaneous operations, than to treat a single patient by complicated procedures. It costs less for 100 crawling paralysed children to walk in simple locally made calipers and clogs than for one patient to be mobile in expensive imported appliances and boots. It is essential to educate or rehabilitate patients in addition to making them mobile. The final aim should be a patient returned to his own village or town, accepted and integrated into his own community, and earning his own living among his friends.”
Provision for the Handicapped
Facilities for children with chronic handicap are meagre but provide a valuable although extremely limited service. Most of the centres are supported by voluntary agencies and receive more or less help from the Government. There are no institutions catering for the pre-school child.
The rehabilitation centre in Dar es Salaam has beds for about 35 patients, adults and children. In March 1976 there were 16 children from 5-15 years and 14 adults. The majority of patients were old polio cases who required appliances (shoes, calipers and crutches) or surgery for contractures. There were two cerebral palsy patients, one talipes and one amputee.
There is one voluntary expatriate physiotherapist who attends the unit every morning and a nursing sister who organises the medical care. The orthopaedic surgeon is busy with acute surgery and so the waiting list for these patients is long. Many patients come from hundreds of miles for treatment. The turnover of patients is slow and the length of stay is three to four months. There is a workshop run by a trained technician who makes and fits simple appliances. These are supplied to other hospitals and centres.
At KCMC there is a modern and extremely well equipped workshop and training school where appliances and prosthesis are made for the handicapped. It is run by an enthusiastic expatriate at present, who is training a Tanzanian to take over. This centre is one of the most modern and well-equipped in East Africa. It provides appliances for other centres in Tanzania and Kenya. Within the hospital a small physiotherapy and occupational therapy unit treats children with cerebral palsy and old polio cases.
The Salvation Army Centre, Mgulani Dar es Salaam, runs a hostel for school children with physical handicap which takes 193 children who are almost all polio cases. The hostel is attached to a Government school and the handicapped children are integrated with normal children. In all two thirds of the children attending the school have handicaps.
There are training centres for the blind in Tabora, Masasi and Dodoma but these include blind adults. There is also a training centre for the deaf in Tabora.
In Handeni in Tanga region, St Francis Mission Hospital, Kwamkono, has a hostel and school for 43 children with old polio. The technician who is a local carpenter, makes very effective and cheap appliances from local materials. There is a smaller similar centre in Masasi in southern Tanzania.
With the limited facilities available for the handicapped it must be assumed that the majority who survive live in rural areas and are accepted by the family and village community. There are many taboos associated with handicap and the fears of the family and community must be allayed with sympathetic education. Integration of handicapped children into family and village life is likely to be the only satisfactory arrangement for the majority of children in Tanzania for some time to come, and every effort should be made to facilitate this by education and support from local medical personnel and auxiliaries.
The Government policy is to ensure that parents are given as much support as possible in managing handicapped children and that facilities are available for education, treatment and long-term care. Collection of reliable data on the patterns of handicap is required so that the right provision can be made for these children. Also anthropological studies on how children have been integrated into the family and village life when no special facilities are available would be helpful in planning a service. The medical services are likely to have the most significant effect on chronic handicap in children in Tanzania by concentrating their efforts on prevention and in this respect the development of a maternal and child health programme is important.
Maternal and Child Health Services
The importance of providing maternal and child health (MCH) services has been widely accepted throughout the world. The social, medical and educational benefits are known to have an important and lasting effect on the welfare of families and therefore the nation. In Tanzania there has been a recent reorganisation of maternal and child health services to provide a more efficient, standardised service. In the past there has been a division between services for mothers and services for children. This has meant that a pregnant mother with a toddler had to attend different clinics on different days and probably had to travel a long way for each visit. The reorganisation will bring the two services together in one clinic and it is planned ultimately to have a basic MCH team at dispensary level.
Approximately one quarter of the total population of Tanzania are women in the reproductive age group 15-45 years. The maternal mortality rate is about 27/1,000 and the majority of deliveries occur at home, although there is evidence that about 75% of women attend antenatal clinics at least once; the average number of attendances is 3.8 per pregnancy. About 35% of women have institutional deliveries whether it is at a large teaching hospital or in a rural dispensary. There is no domiciliary service and postnatal services at present are limited.
Family Planning Services
The family planning association of Tanzania (now UMATI) originally introduced a service in Tanzania to meet part of the need. Family planning is now an integral part of MCH activities. UMATI continues to provide clinical services but increasingly organises training and information services.
In 1969 children attending health clinics were estimated as 13% of the country’s pre-school population. These clinics were organised as the so-called “under five clinics”, providing curative and preventive services with mother receiving health education. Although these should ideally run in conjunction with antenatal clinics and family planning clinics, often this was not possible because of lack of trained staff or unsuitable premises and equipment.
The aim of the reorganised MCH service is to provide a multipurpose clinic for mother and child. It incorporates all the benefits of the under five clinic with the added advantage of on-the-spot antenatal and postnatal provision and family planning. Children are weighed, immunised, examined, treated, given prophylaxis and mothers are given advice. Women receive antenatal care, prophylaxis, immunisation, postnatal care and family planning advice and treatment. This combined approach works very well and cuts down duplication of work and also travelling for patients and medical staff.
Mobile clinics are well suited to maternal and child health work. One land rover can carry equipment and personnel sufficient to provide a very satisfactory clinic. One such team provides an important service to a village on the higher slopes of Kilimanjaro. The driver acted as an important member of the team, registering new patients. A useful illustration of the relative cost and difficulty of travel is the cost of an avocado pear in this village on the higher slopes of the mountain, compared with the cost in the market in Moshi 15 miles away in the valley. £1 would have bought 150 avocado pears in the village and only 15 in the market. The mobile clinic took about one hour to get to the village from the hospital whereas it would take a mother and child at least four to five hours.
The standardisation of equipment and methods of running MCH services is another advantage. The universal use of the “road to health” charts as described by Morley and adjusted for local conditions is one innovation. Standard record forms for collection of data are used at all clinics and information is returned centrally for analysis and evaluation.
The Ministry of Health has established a central MCH Unit under the Director of Preventive Services although the maternal and child health clinic is designed to provide both curative and preventive services. This unit is responsible for the administration of the national programme, setting up training schemes, data collection and evaluation. It co-ordinates the supply of refrigerators, vaccines and appropriate equipment for the clinics. Initially four zones were established and based on Mwanza, Kilimanjaro, Dar es Salaam and Mtwara. In 1976, two of these zones were operational. Each zone has a co-ordinator responsible for liaison with regional medical officers and the regional development teams. The regional administration which, with the present plan for decentralisation of Government, has the responsibility to develop WCH services, co-ordinates district provision. Fourteen training schools for MCH aids have been established and the trainees have completed primary school and are taught all aspects of maternal and child health. It is an 18 month course and at one such training school in Bagamoyo, the first year intake was 36. The MCH aid will ultimately replace the rural midwife and at the dispensary level the team will be – rural medical aid, MCH aid and health auxiliary.
Poor communication is one of the main obstacles to development, and it is the difficulty that health teams have travelling to rural communities or patients travelling to clinics that most hinders the provision of health services. Vaccines must be kept at low temperatures and the logistics of getting viable vaccine to a patient in a rural area are enormous. UNICEF refrigerators have been supplied to assist the Tanzanian MCH service. These are run on paraffin which has to be available at the rural dispensary. There is evidence that the refrigerator takes several hours to reach the required temperature once the door has been opened for a short while. This may damage the vaccine and at present there is no simple way of detecting if the vaccine is satisfactory.
Mobile units require vehicles which are well maintained for the rough roads on which they must travel and petrol must be available. The present economic problems of the western world have put an enormous strain on developing countries and in Tanzania medical personnel are having to restrict their travelling simply because the health service cannot afford it.
Nutrition Rehabilitation Units
An important aspect of maternal and child health is the management and prevention of malnutrition. These units are usually linked with a hospital paediatric ward and children who have been admitted to the wards with malnutrition are discharged from the ward to the rehabilitation unit with their mothers. Here they stay about two to three weeks and are exposed to health education in a very practical way. Mothers are taught the importance of balanced diets for their children, how to grow suitable foods and rear chickens for meat and eggs, etc, and how to cook the food using traditional methods. Home economics, family planning, maternal and child care are also taught. The idea is that this will prevent the parents returning with other malnourished children, since it is not so much a lack of available food that causes malnutrition amongst under-fives but the mothers’ ignorance of the correct diet for a child. The hope is that these mothers return to their villages and pass on what they have learnt. A more profitable way of disseminating information is to admit mothers who are looked up to in the community and who have healthy children and to teach them so they may return as teachers to their villages.
Introducing the second Five-year Plan in 1969, President Nyerere said:
“Giving birth is something in which mankind and animals are equal, but rearing the young and especially educating them for many years is something which is a unique gift and responsibility of men. It is for this reason that it is important for human beings to put emphasis on caring for children and the ability to look after them properly, rather than thinking only about the number of children and the ability to give birth.”
This has been a much quoted statement but it emphasises some important points. There is a rejection of the old tribal law of acquiring status and wealth by proc1ucing a great number of children and an affirmation of the importance of responsible parenthood and the need for the protection, education and care of children. Implied in this statement is the importance of healthy mothers in giving birth to heal thy children and the need for family planning services.
In a large country with a scattered population and poor communications, a service that reaches the population, who live largely in rural areas, must be integrated with village life. Tanzania is made up of a large number of tribes with different customs and languages. Swahili is the national tongue but the second language for the majority. Therefore the Government policies have aimed first at developing a national identity to ensure political stability within the country and secondly rural development at village level.
Change has come rapidly to Tanzania and this can be very disturbing to any society. The development of a road can transform a remote village and the improved communication can bring with it education and an improved social environment, but also it brings all the painful changes of development. The development of health services in Tanzania has been, up until recently, more concerned with curative services despite the regular reports emphasising the need to develop preventive services.
The Government has recognised this need for preventive services and also the importance of healthy educated children to the country’s development. Looking at the mortality and morbidity of childhood, the majority of acute and chronic handicapping disease in Tanzania is preventable. Improved nutrition, clean water supplies and immunisation against common diseases would transform the pattern of disease in children. Within strict economic limitations the Government has introduced a maternal and child health service which should have a significant impact on the nation’s health. The policy of setting up ujamaa villages and self-help schemes should greatly enhance the development of the service. Also the decentralisation of Government enables the people to plan priorities at village level.
Improvement in child health services will only slowly affect the number of children with chronic handicap in the country. Provision for such children in western countries is criticised as inadequate, and to provide anything like an adequate service in Tanzania is impossible in the near future. In UK the emphasis is on supporting the family to care for the handicapped child and where possible integration into normal schools and a normal environment. • In Tanzania a similar approach is needed; support within the family and the village, by augmenting the traditional form of management of these children with appropriate education medical care and simple rehabilitation techniques. It has been shown that a great deal can be done to help the physically handicapped at village level by providing simple aids and prostheses made from local materials. The removal of fears and taboos related to the handicapped will also improve the quality of their lives. It is likely that the MCH aid will be the key person at village level to support and guide parents so that the child can be given every opportunity to develop his full potential.
There will still be a place for residential care for the more severe problems, particularly in the urban areas. Again residential schools to teach particular skills to children with specific defects (e.g. blindness) will be necessary, but it is essential to maintain family contact to ensure rehabilitation of the child to a sympathetic environment.
The dilemma for the medical worker in a developing country is to know how best to use his skills and time. Medical problems surround him and urgent problems are always requiring his attention. What helps him understand and appreciate the medical priorities is reliable information on disease patterns within the community and also a constant evaluation of the work he is doing.
Epidemiological studies of morbidity and mortality pinpoint the common problems in the community and are an essential adjunct to providing a relevant and practical service, particularly when the economic restrictions are so great.
Within the reorganised MCH programme there is a system of data collection in a standardised way which will be analysed and evaluated centrally. This will be an important “barometer” on which to measure the services’ strength and weaknesses.
It is important that the provision of medical care and the development of services for mother and child should build on the positive aspects of traditional family life and in order to make a developing service acceptable to the population, more social and anthropological studies are required. In this way modern medical techniques will augment the valuable aspects of traditional maternal and child care which have developed over the centuries. This must be emphasised since it is becoming common place in many countries throughout the world to see the steady drift of populations from the traditional rural setting to the ever growing slums and shanty towns of the cities. In this sort of environment important, well established traditions of family life break down and this can do untold damage to the developing child. What appropriate medical care can provide in Tanzania is a gradual manipulation of a threatening environment to provide a greater potential for the normal and healthy development of children and through them a richer cultural development for the nation.
(1) “The Young Child in Tanzania”, A report on a study of the young child from conception to seven years: Tanzania National Scientific Research Council, 1973.
(2) “Poliomyelitis” by R.L. Huckstep (Churchill Livingston, 1975)
A copy of the full report on which this article is based and a full list of references may be obtained from the author, Dr. Peter Christie, The Wolfson Centre, Institute of Child Health, Hecklenburg Square, London WC1.