Early intervention, treatment, rehabilitation and follow-up of persons with Hydrocephalus and Spina Bifida in Uganda and Kenya”

Background:
In 1996 RHF/IF started a pilot project for early intervention, treatment, rehabilitation and follow-up of children with Spina Bifida and Hydrocephalus in Africa. The aims of the project are “to improve the lives of persons with Spina Bifida and Hydrocephalus and their families, by organising appropriate training, surgery and rehabilitation, through existing medical, therapeutic and community based services in the different partner countries and to prevent these impairments as much as possible”.
Purpose/objective: In 2005 RHF/IF decided that they wanted an external evaluation of some of the programmes and they chose to evaluate the programmes in Kenya and Uganda. The two countries were chosen because the programmes here have been established for some years. RHF/IF stated that the general aim of the evaluation was “to get an opinion of the influence that the project has on the lives of the parents, children and families”

Methodology:
RHF/IF wanted specifically to investigate the effects of the project on the user at “the end of the chain”, the disabled child and its family. They wanted interviews with the families so that the parents could tell their stories. Furthermore in understanding with the medical advisor, that the evaluation should focus on families with children with both Spina Bifida and Hydrocephalus (SB and HC). It will always be difficult to evaluate a project where no “baseline” is described. This is the case with the programmes involved in this evaluation.
The aims of the project also proved somewhat difficult to make concrete and the different programmes in each country did not have defined goals. This evaluation will therefore bring back the stories from the parents and try to see them in the light of what RHF/IF wants to achieve. An interview guide was prepared by the evaluator in cooperation with RHF. Even though interviews were used, this is not a qualitative study in a scientific way. A fairly strict, structured interview was necessary due to the challenge with interpretation.
The areas of focus for the evaluation were already established by the ToR. The areas of focus were:
- The surgical intervention
- CIC (clean intermittent catheterization)
- Parent groups
- Prevention of Spina Bifida (folic acid)
- Mobility, physiotherapy and occupational therapy

These areas were chosen because it is in these areas (except mobility, physiotherapy and occupational therapy) that RHF/IF has allocated their funding and training.
The total number of interviews was fifteen.
Key findings:
The overall impression is that the parents were willing and very interested in passing on information that they thought would be helpful.
Table 1: Age and diagnosis in Uganda 

Table 2: Age and diagnosis in Kenya

Surgical intervention
Of the total of 15 children, 9 children had a swift referral to the hospitals for surgical interventions. It seemed they had been operated as soon as possible within a few days. If they had had to wait, it was due to infections. The others were delayed in the referral due to lack of information at the local hospitals or nearby clinics/health centres. None of the families in Uganda had received any written information about SB or the surgery and only one practised measuring of the head (the child to be operated in Dec 2006). Two mothers remembered to be told how to look for complications. Only one of the mothers interviewed in Kenya had received “Watoto wetu” (Our children), a comprehensive leaflet in Kiswahili about SB and HC and how to stimulate the child. This mother and two others had received leaflets in English about the shunt. Of the ten families that had been introduced to CIC (clean intermittent catheterization), nine are still practising the catheterization. Some mentioned problems with the catheter size and several told that they did not know how to look for complications with the urine.

Parents groups.
Out of fifteen families, seven had attended parents’ group meetings. Five families had never heard of the possibility to attend such a meeting. Income generating activities and information about the diagnosis and how to handle it were major topics in all the meetings.

Prevention/Folic Acid
There is little awareness in the local communities both in Uganda and Kenya concerning the use of folic acid. In Uganda none of those interviewed were well informed and they did not take preventive folic acid. Some mothers told that it could be a misunderstanding, and that some women were afraid that the pills were for birth control. In Kenya three mothers still take folic acid.

Mobility/physiotherapy/occupational therapy
None of the children that were interviewed in Uganda had been seen by a physiotherapist. The lack of written information was evident. Only two families could report that they were given oral advice on stimulation and exercises. In Kenya one mother had received written information or leaflets on exercises, and five out of the seven had received oral information. One mother told that both she and the father are active in stimulating the child with the exercises.

Recommendations:
Health care services in a country consist of many elements like vaccination, health clinics, health centers, local and regional hospitals, well educated staff, easy access to help and several other factors. To be able to improve the quality of health services for children with SB and/or HC one needs to influence all or many of these different elements. The introduction of specialized surgery is one very important factor that helps the children to a better health care service. From the interviews, the families told stories that showed that just a few had been advised on how to handle or stimulate their child. Very few had been given physiotherapy on a scale that would make a difference. It will be important in the future to cooperate much better with the existing possibilities of physiotherapy to contribute to an improved rehabilitation process. Knowledge about the disorder is a key focus for RHF/IF and written information (leaflets) both in English and Kiswahili have been produced. It was therefore a surprise to find that just a few parents could tell that they received such information. This is clearly an area that is important to improve. The evaluation shows that it is necessary with more focus on how the CIC is administered at home by the parents and every follow up must check whether parents practice CIC as advised. Written information or information with good illustrations will also help the parents. If necessary, future contributions from RHF/IF to make such information material possible would be a very good investment. Just as important as providing folic acid is the information the mothers take with them home. Those giving the pills must make very sure that the mothers have understood. To be more effective in the prevention strategy, RHF/IF could assess the possibility of expanding their information efforts also to the general population in this matter by means of the hospitals or parent groups.