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On the following sheet you can see how I have structured this lecture.

- introduction
- account
- study - objectives, formulation of the question
- subjects
- method
- conclusions and recommendations
-  comments
-  data on child and family
-  social work and assessment
-  support provision in different situations
- points of attention and activities in Early Intervention
-  general
 

INTRODUCTION

In general, when the period of intervention has been concluded, Theofaan in conjunction with the parents evaluates the service.
Although this type of service provision to visually impaired children and their parents has existed for a considerable time (in the Netherlands for over 20 years), parent satisfaction with the service has never been systematically studied.

I felt it was important to carry out a satisfaction survey, despite the methodological snags involved, especially now since the number of children in Early intervention has risen sharply over the past 15 years. I will show you some figures:

Early intervention: children in care

1983   70 children
1986   99 children
1989   145 children
1992   279 children

(Source: 10 jaar Theofaan, Dr H. Gresnigt)

1994   296 children
1995   302 children

(Source: Theofaan annual report 1995)

This increase has led to an enormous expansion of Early Intervention, in particular in terms of client numbers. As a result, the quality and the improvement of the service may have somewhat receded into the background. I therefore felt it would be important to gain a better insight into the quality of the service by means of this survey.

The usefulness of a satisfaction survey lies not so much in establishing the level of satisfaction, but more in detecting areas of dissatisfaction which can be the basis for improving the quality of the service.

STUDY

The purpose of the study was therefore to find out whether the format and the contents of the EI service provided by Theofaan meet the parents' needs.

The main question of the study was:
To what extent are parents satisfied with the orthopaedagogical intervention provided (at home) by the Theofaan Early Intervention department.
(or: to what extent are parents satisfied with the Early Intervention service offered by Theofaan).

We can distinguish different aspects in the Early Intervention process, which in practice intersect, but for the purpose of the study a number of aspects were artificially singled out. Different aspects were addressed, e.g. intake, assessment, the role and activities of the support workers, educational workers, etc.

SUBJECTS
The subjects of the survey were parents of visually impaired and multiple handicapped children under the age of 10.
The support may have been provided at home and/or in various institutions and primary schools. This support was finished and these contacts were terminated up to 3 years before the survey was carried out. There was no longer a direct relationship between the parents and the EI-team and this would as much as possible help overcome the problem of socially desirable answers.

METHOD
The survey was based on a structured questionnaire. With the majority of the questions parents were asked to express their level of satisfaction about different aspects of the EI service. They could give three different answers, i.e.
- satisfied
- not satisfied/not dissatisfied
- dissatisfied.
Furthermore, with a large number of questions the parents were asked to explain their answers. This would possibly benefit the reliability and validity of the parents' statements. Most parents amply complied with the request for additional information.

CONCLUSIONS AND RECOMMENDATIONS

In a satisfaction survey similar opinions expressed by different parents may have very different meanings and therefore the overall opinion of all the parents has limited value. We should therefore be cautious in drawing conclusions from such a survey. By combining all the results of the questionnaire a lot of important information would be lost.
In particular the explanations provided by the parents on various aspects in combination with their rating of these aspects, in my view, yield more usable information. On the basis of these explanations and ratings it is easier to draw more objective conclusions and to make recommendations that assign more value to the parents' experiences with the Theofaan Early Intervention service.

The survey shows that the group of parents studied were satisfied with their contacts with the Theofaan EI.
However, we should bear in mind that this survey did not examine whether this group of parents (88 = 57%) was representative of the entire group of parents approached (154).
Conclusions can therefore only be made on the basis of the data that these 88 parent have supplied. As most of the parents indicated that they were satisfied with the early intervention, both in general and with regard to the individual aspects of the service, there was not much point in statistically examining the relations between different variables and the level of satisfaction. We can conclude that detecting dissatisfaction has proved to be difficult.

How can this overall satisfaction be explained?

The most obvious answer is, of course, that all the parents have really been satisfied with the Theofaan EI service. From the large number of explanations that parents gave to the different questions such a conclusion perhaps could be justified. As far as the reliability of the parents' statements is concerned, these explanations have proven their value in this survey.

However, a number of alternative explanations should also be given. It may well be that the parents have given socially desirable answers, both with regard to the answer (satisfied/dissatisfied) and their explanations.  This despite the fact that there is no longer a relationship between the group of parents approached and the Theofaan EI team.
Another explanation could be that parents, in general, have been satisfied with the service without differentiating. Whether there has been a question of parents having forgotten less positive experiences unfortunately cannot be established.
A 5-point scale, rather than the 3 point scale that was used, would possibly have yielded a more differentiated picture; this would possibly have made it easier to draw a number of useful conclusions and to examine possible relations between characteristics and certain variables.

Another point is whether the outcomes would have been the same if all the parents approached had returned the questionnaire. It cannot be excluded that the number of dissatisfied parents in this group (N=50 = 33%) is higher than in the group that responded.

On the basis of the survey results it can be concluded that the parents are satisfied with the format and contents of the Theofaan EI service. A further deepening and improvement of the service, however, could result in an even higher level of satisfaction among parents.

Despite this general satisfaction a number of aspects are noticeable because in relation to the other aspects a lower level of satisfaction was expressed. These relatively lower rated items will be addressed in more detail later in addition to other conclusions and recommendations.

At the moment the Theofaan Early Intervention department does not use standard evaluation forms to be completed on the conclusion of the support. However, we recommend that a standard evaluation form be used. It would give parents the opportunity to express their expectations, ideas and experiences with regard to the service. By means of a standardised form all aspects could be addressed. It would provide the department with data concerning the format and contents of this service.

DATA CONCERNING THE CHILD AND ITS FAMILY

First of all, some information that came out of the survey. In most cases the families concerned were "complete", i.e. consisted of a father, a mother and a child or children (91%).
In 42 of the families (48%) the visually impaired child is the only child in the family. In 86% of the families there are additional children. The number of boys represented in the survey is nearly twice as high as the number of girls (66% vs 34%).

Under the section "the nature of the impairment" partial sightedness was mentioned the most (60%). The group of multiple handicapped children is about half of this (33%), while the number of blind children is 7%. Whether these figures are representative of the children of all the parents approached in this survey has not been established.

The group of parents with multiple handicapped children with a visual impairment represented 33% of the respondents, whereas currently over 50% of the service users fall under this category. Possibly, for whatever reason, less parents of this group of children responded to the survey.
Secondly, it could be that this number of multiple handicapped children is representative of the period concerned. In particular over the past few years this group has increased significantly. It will be clear to everyone that this fact affects the nature and contents of the service provided by Theofaan and will require gaining more in-depth knowledge about this issue.

44% of the parents indicated that they received a lot of support from their family, friends and acquaintances. 16 parents indicated that they received little support from their social environment (18%).

In my view, the number of parents who received "not much/not little support" and "little support" from their family, friends and acquaintances (38% and 18% respectively) is remarkable and significant. Possibly the parents of visually impaired children are often alone in fulfilling their educational task. Their family may be relatively isolated from their environment.

38% of the parents foun it easy to appeal to service institutions for help. The majority of the parents indicated that they found this not difficult/not easy (46%). 15% found this difficult to do. Possibly there is too high a threshold for parents to use these institutions.

The average age of enrolment for early intervention was between 1 and 4 years. 19% of the children were enroled during their first year.

Early recognition of the handicap and familiarity with Theofaan appears to work well. Nevertheless, a child's visual impairment may become more evident as the child grows older. Placement in a day care centre or a special school that can pay more attention to the visual functioning may lead to questions about the child's vision.

The majority of these children (53%) subsequently received support for 2 to 4 years, while 27% received support for 4 to 6 years.

34% of the parents indicated that during the Theofaan early intervention they also worked with other support agencies.

SOCIAL WORK AND ASSESSMENT

*From the survey data it also becomes clear that the opportunity to have supportive discussions with social workers (depending on the parents' needs) forms an important part of the support Theofaan offers to families with visually impaired children. 43% of the families have used this opportunity to their full satisfaction.
In particular the way in which social workers approached the parents appealed to the respondents. Parents characterised this aspect of the service with phrases such as: they have all the time in the world, listening, supportive, helps them to reflect on their own feelings.

*Assessment
The data show that both the assessment and the support (which are mentioned together under one category) were the main reasons for parents turning to Theofaan (51%). 20% of the parents did not know this before they contacted Theofaan. 18% of the parents indicated that the assessment was the main reason, whereas only 10% stated that the actual support was the main reason for using Theofaan.

The parents indicated that the assessments (ophthalmological, psychological and physical) were important in forming and keeping a good overall picture of the child's development and potential and guiding the support at home and/or in other situations. In their explanations the parents emphasised the calm and relaxed approach and that they sensed great involvement of the people concerned. The parents felt that a thorough, expert and extensive assessment had been carried out.
 

Recommendation:
It would be better if the various examinations of the assessment were spread over two days, or that certain examinations which are not strictly necessary (depending on the parents' request for assistance) were omitted.

PROVIDING SUPPORT IN DIFFERENT SITUATIONS

The frequency of home visits must be determined by the parents wishes and needs. The survey results indicate that the educational support department has to handle even more sensitively arrangements (visits) made with parents.

Children who attended a primary school where they were supported by Theofaan were amply represented in this survey.
The survey also shows that it is important to involve the parents (more) in the support provided at primary school, but possibly also in other institutions. The function and the contents of the support should be discussed explicitly with the group teacher and should be more concrete and clearly defined in terms of content.

The cooperation between parents and the developmental support service forms an important part of the support Theofaan provides. Parents experience this support as being child-oriented as well as parent-oriented. This aspect will be addressed in more detail later on.

A considerable number of parents mentioned staff changes in developmental support. These changes should be avoided as much as possible. More attention should be given to a clear working method and support structure, as well as honouring agreements.
Issues concerning the termination of the service and the handing over of the early intervention also require attention. Greater care is required here. A standardised questionnaire/evaluation form would be useful in clarifying matters not only with regard to the parents but also at the institutions and primary schools.

POINTS OF ATTENTION AND ACTIVITIES DURING THE SUPPORT

Under this section parents were asked questions about the attention that was paid to the various aspects of the development and education of visually impaired children during the early intervention. The different items were taken from the so-called Bielefelder questionnaires (professor Brambring, 1989).

In addition to the level of satisfaction, the category "not applicable" was included as a possible answer.

A number of more general observations can be made with regard to this issue.  Firstly, it is remarkable that the number of parents that were "not satisfied/not dissatisfied" with the amount of attention paid to the various aspects of the support is relatively large (an average of 21% for all the sections). Parents appear to have taken a fairly neutral standpoint.

Possibly the developmental support should pay more attention to developing methods and deepening theory and treating a range of educational problems as these are addressed in the different sections.
It is important that development support workers continually and sensitively involve the parents in the work they do. It is necessary to be explicit about the working methods and objectives, and to always take account of the questions parents have.

Another noticeable point under this section was that many parents gave the response "not applicable". This particular answer was chosen most often for a considerable number of sub-questions; for example with regard to the question of how to deal with unusual behavioural patterns:
- stimulate learning to walk
-  orientation and mobility indoors
- independence (general daily living skills).
Maybe the parents found it difficult to recall what exactly had been the focal points of the support. It is obvious that the parents did not consider these items to be urgent issues in the support provided by Theofaan. And/or maybe the parents did not experience these items as points of attention in the support. In the latter case it becomes clear once more that it is important that the working method and the objectives are clearly explained to the parents.

As a result of the above, it is recommended that at the beginning but also periodically during the support provision a detailed inventory be made of the issues that are important to  the parents which would then be translated into support objectives. The combination of data provided by all clients over the years will eventually provide a thorough inventory of all the needs of the parents of visually impaired children. By further developing the methods used these needs can be sensitively addressed.

Aspects that come out most favourably, with a satisfaction level of 85% or over, include:
- problems concerning vision (92%, N=85)
- developmental steps achieved (88%, N=81)
- use of vision and how to stimulate this (88%, N=72)
- reaching for toys and materials (93%, N=93).

Finally, a number of items under this section that score a relatively lower level of satisfaction are striking. These concern (in my view) aspects related to educational problems that are more serious than the average problems we deal with, for example behavioural problems (66%, N=47), unusual behavioural problems (57%, N=25) and sleeping disorders (50%, N=18). This means that when faced with these problems, we probably failed to adequately address these.
A possible recommendation here would be further deepening of the theory and treatment of various more serious educational problems.
 
 

GENERAL

Parents experienced the Theofaan early intervention service as being both child- and parent-oriented. Child-oriented activities, carried out by the support worker, were mainly aimed at different aspects of the child's development. These had an effect on the development, self-confidence and contacts with others.
Parent-oriented activities were described as 'providing better insight into ..., advice/tips and addressing parents' questions, interaction with the child and confirmation of the parents' abilities and potential.
The survey also showed that a standard visit of a social worker or educational worker, for example six months after the service has been terminated, would be desirable. This would give the parents the opportunity to ask any questions they might have, to relate their experiences, etc. - this visit could function as a type of "after care". Possible new needs could then also be addressed.