EACH coordinator - Report : from Vienna to Helsinki

  • Category: 9th Conference Helsinki 2008
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I am happy to welcome you all in Helsinki for our 9thEACH Conference and our commonmeeting with NOBAB.

It will be a short report (just one year after Vienna) and  you will soon be able to print the previous 2007 report on our EACH website which was completely renewed by Paul Kleingeld.

This report will give a general view of our work to distribute our Charta and help its implementation in European hospitals.

1 - Helsinki and the NOBAB Congress

Short after our last Conference in Lisboa in 2004, we asked EACH associations to tell as soon as possible which one was willing to organize the next Conference. You may remember that the answers we received came mainly from countries who already had organized previous conferences.

For this reason and because we believe that it is important for EACH members to meet on a regular basis as direct contacts play an important role in exchanging our experiences, we decided to have an enlarged General Assembly and a Committee meeting in Vienna.

Shortly after this decision about Vienna was taken and as the work to prepare the Vienna meeting had already began, Anika Schantz (NOBAB Finland) proposed to organize the European Conference in Helsinki 12-14th September 2008 and to have a joint congress with the Nordic countries.

And this is the reason why we are all here to day.

The Nordic countries do meet every year in one of the Nordic countries.

It is the first time that an EACH Conference is done in common with an another big association and NOBAB is in Europe the only example of a regional umbrella association of national associations "Children in Hospital". It is the reason why this Helsinki EACH Conference is not organized in a similar way, as it was in Paris, Basel, Milan, Bruxelles, Lisboa.

I want to stress on the financial aspect of this 9th EACH Conference.

Finland is quite expensive, compared to other European countries and of course NOBAB FINLAND can't do much about it.

Nevertheless, Hanne Sieber and myself had a lot of mail exchanges about the 450 euros asked to EACH members for their participation.

In the previous Conferences they were no fees to be paid by the EACH members for the Conference (the only expenses were travel and stay). The onlyone who paid fees to attend a part of the Conference called the "national day" were the professionals who were interested in the subject of the "national day".

Unfortunetelly, we didn't succeed to convince our Finnish friends. We suppose that the commercial Congress organization could not accept this EACH demand and very are sorry about it. The 450 euros added to the other costs has certainly refrained some EACH members from coming to Helsinki and we can only regret it.

2 - Information and Pef drawings

 In Vienna we decided to ask Pef for new drawings. We intended to make a new postcard for EACH. The subject chosen was "How to inform a child". During our Vienna meeting Peg gave us a sort of guideline about what Information to a child should be.
Here are the guidelines proposed by Peg.

Notes for the EACH Post Card

  • Information for a child in hospital should be shared and not just given.
  • It needs a conversation in 3 parts :
    • Ask and listen to find out what the child already knows.
    • Offer the information in age-appropriate words and be patient and ready to repeat.
    • Check to see what the child has understood.

As asked, I contacted Pef with this demand. He considered that such concepts were very difficult to express in a drawing but he accepted to try.

And here are the three first drawings he sent for EACH.

  1. - Ask and listen to find out what the child already knows
  2. - Offer the information in age-appropriate words and be patient and ready to repeat.
  3. - Check to see what the child has understood

Among the APACHE members we discussed about those three drawing and our opinion was that the drawing number 3, was more about training as about checking to see what the child has understood.
We all know that nobody, and children especially, understand exactly what you want them to understand. We asked Pef to make a drawing that illustrates this discrepancy, this gap between was is said and what is really understood by children.

And here is the fourth drawing Pef sent.

4 - Check to see what the child has understood

Nevertheless, I send those the four drawings to Margreet and Hanne and the discussions began. It reminded me on all the discussions during one we had together for the ten Pef drawings now commonly used for our Charta.

Humor is very cultural and I suppose those discussions will start again about informing the child and the use we can have of those four drawings.

Meanwhile Margreet liked very much the drawing number 3 but wanted to use it with the drawing illustrating the point 3 of our Charter. I called Pef who agreed with this specific use of his drawing which you can see below.

Kind en Ziekenhuis (The Netherland) used this drawing and the result is a very nice poster for their 30 years Jubileum. To emphazises again about humor and culture, Mary O'Connor from the Irish association did like at all this nurse pictured as a sort of angel.

I just hope that the work Pef accepted to do for us will be used in the best possible way and that our discussions will end with action.

3 - Seattle - July 2007

 You surely remember that Margreet van Bergen raised our interest about "Family-centered-care" by organizing a Conference on « Family-centered maternity care » held by Celeste Philips, in Turnhout in 2005. This general concept, developped in the USA is we believe a very interesting approach which is linked with the principles of our Charter.

Following this first contact with the concept, four members of EACH (Hanne from Switzerland, Margreet and Jaimie from Holland and myself) attended the Annual Gravens Conference in Orlando about Physical and Developmental Environment of the High-risk Infant. We learned a lot and met very interesting people.

For this reason, in the name of EACH, I submitted a presentation, which was accepted, at the 3rd International Conference on Patient-and-Family-Centered Care: Partnerships for Enhancing Quality and Safety. This Conference took place in Seattle (Whashington) in July 2007. Hanne Sieber and Margreet van Bergen also attended this Conference. I want to insist on the fact that all the expenses, like previously, were supported by the national associations and personnal funds.

The title of my presentation was : The Concept of Partnership in Care with Families and the Rights of Sick Children in Hospitals.

I emphazised on EACH achievements and insisted on the fact that we di dit in spite of being a group of small organizations, with little financial means, no power, and no lobbying abilities. And here are some of the slides I showed to illustrate the variety of european associations member of EACH.

pic1

The Conference was quite different from the previous one we attended in Orlando. We were surprised by a sort of religious atmosphere during some speaches.
But again, we learned a lot and met also interesting persons.
At this Conference there were many Patient-advocates and in pediatric wards they are very often mothers who already have had an experience (often a very difficult one with an handicaped child or even the death of their child).

 

 

pic2

Those mothers (we didn't meet fathers) can apply for becoming parents advocate: they are given a training by the hospital and then work (and are payed) in the pediatric ward to improve the way parents and children are considered and treated by the staff. They also prepare programs related with the concept of family-centerd care.

 

 

 

4 - EURONET

 The next general Assembly of Euronet will take place in Brussels on the 30th of Septembre 2008.
Margreet van Bergen accepted to represent EACH.

5 - Some projects which could be interesting for EACH

 APACHE is concerned by three new projects, which could be also interesting for EACH associations. Of course those projects will only take place if we get the funds.

1 - A film

I was contacted by a director for TV documentaries Barcha Bauer who was interested to see how children rights in hospital are implemented in European countries and why it is different from one country to another. The aim is to find explanation in history, culture, power of doctors, economical situation, etc. Benoît Sourty, a documentarist already wrote the scenario with the advices and informations I gave him about the various European situations. And now they are searching for funds to be able to do it.

If they succed, I shall of course keep you informed.

2 - A book with Pef drawings about children in hospital

All together we have nearly 150 drawings of Pef about hospital and children. APACHE asked Pef if he was ready to have those published in a book and he agreed. May be some of you could be interested.

3 - A book of photographies about humanization in children hospitals

In 2009, will be the year of France in Brazil (we had a few years ago the year of Brazil in France). On this occasion, I recently met a Brazilian photographer André François.
He works since many years on the subject of humanization of health care in two hospitals one Brazil using photograpy as a tool to change mentalities.
I brought here the book he made and you will be able to see the quality of his work.

We have prepared together a project of a book of photographies about children in Brazil and one in France. I hope that we will succeed to be sponsored for this work.
Of course I explained him our work in EACH and he is willing to make another book with the same kind of photographies in several European countries. Then, if it happens, we could make witth EACH.

The participation to a European project is a long term work. Ideas spread slowly and the construction for an Europe respecting sick children rights in and out of the hospital is worth the work we are all doing.

Is is very important for all of us to welcome and work with our new members from the new European countries. And we also hope some others will come and join EACH.

A lot of economical problems are raising in Europe. They have a lot of consequences on every day life in hospital as well as on ethical problems.

I hope we will have a lot of interesting and rich exchanges, as it is the aim of EACH.

Sylvie Rosenberg-Reiner
EACH - Coordinator
Helsinki September 2008

 

 

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