Abstract
Many research projects especially talk ABOUT young persons: these youngsters are called 'clients'. One allows others to talk about the quality of their life, about their problems or disabilities in a small-scaled research project by the university of Ghent about forty youngsters (aged 11-16) living in a residential facility for so called 'mildly mentally retarded youngsters took the floor.
The researchers talked with them about their life: how do they like to be called 'handicapped', 'disabled',...? What is their opinion about living in a group? How do they experience life away from the frame of reference for these conversations was among others the Declaration of the Rights of the Child and our firm belief in 'co-operative research'.
In this contribution we would like to examine:
1. Introduction.
In Belgium there is a lot of research about people zith disabilities, their voice is seldom included in reserchmaterial. In the last months - with the pressure of the self advocacy and parents movement - this can no longer be denied. On the other hand it`s too easy to shout "Go and talk with the children!" This paper zill deal with a research project where we fully involved children, we want to share with you especially the steps we took to get into contat with the children.
2. The research project: general introduction.
The department of Special Education of the Ghent University was asked by 't Hooghout a private organisation in the Netherlands that has a residential facility for children with the label 'mild mental retardation' to talk with the children about the quality of professional support they get. The children involved were boys and girls in the age group between 11 and 16. Fror our Department it was felt as a unique opportunity to find out:
| - | how these children were reacting upon there label they got |
| - | how these children survive in a place away from their families |
| - | if the framework of the UN convention of Childrens Rights is usefull as a framework to talk with children about their Quality of Life and the Quality of support they get. |
3. First step: getting to know the culture of the facility and the children.
We asked one of our last year students to join the project and to write her final assignment about this project. It gave us the opportunity to learn to know the place and the kids a bit. She had long conversations with 10 kids based on a topic list we took out of an extensive literature study. We learned a lot of practical things fro; this first step: - we felt that some of the topics were difficult to handle for some kids, some of them wouldn't talk easily about their parents and family e.g. - we learned that you better not 'jump in' to do an interview. Children first wanted to show us things (e.g. their bike, or room) before talking - we learned that the topic list was helpful as long as it didn't became a questionnaire - we learned that the room in which the dialogue took part was very important. The room we got from the organisation ( they thought that this was a neutral place) seemed to be the place were children were asked for discussions about their future (can you go back home or not). This was from the perspective of some children definitely not a safe place.
4. The start of the project itself.
4.1. About ten days before the interview kids got a personal letter were interviewers announced the date and the hour they would see the children. There was a picture of the interviewers so that the children could get an image of "the strangers from Belgium". We also mentioned how long the interview would take at minimum, so kids could organise other things for that day to. There was also a small stamp of a dog on the letter. This stamp was crucial because it became the logo that was put on all the personal mail kids got from the project.
Some days before the interview, researchers phoned the kids to make sure that everything was understood and to make the first 'raport' from person to person.
4.2. During the interviews we used icons about the interview topics. ( iconf for the residential facility, friends, school, things I'm good in, things I'm not that good in, my dreams, ….) For some of the children these topic cards offered an opportunity to put some topics away till the end of the interview. They could pick out the card (topics) they wanted to talk about first. For other children the cards served as a visualisation of the process of the interview (when you put away a card this topic is done)
4.3. We also worked upon an agreement concerning 'informed consent'. The document was made in easy to read language. It told the children what was going to happen with the stories they told us. They knew that they would get a personalised version of the fully typed interview (if they agreed in the interview everything was taped on audio-tape). If they wanted they could decide to take an alternative name that would be used in the report. The document was signed by the researchers and the kids.
4.4. At the end of the process we wrote two specific reports, one for the kids and one for the adults. Again it was in easy to read language, we invited the kids to read the report (if necessary with support of their parents, educators or friends) At the end of the report for the kids there was a chapter about children's rights and about the dangers kids who live in an institution are confronted with. We made up a page wher kids could note down the rights they wanted to work upon.
5. And now?
We know that all the kids got the report we made for them and that they welcomed it with enthusiasm. The management of 't Hooghout promised us to use these books as a tool in the support of the children. They wanted to use it also to evaluate the things they're doing with the kids. They promised us to take contact with us after the summer holidays. Can you imagine that we are waiting with a bit of frustration?
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