Op het 19de internationale congres in Alpbach, Oostenrijk, werd ik beloond met de derde prijs voor beste “oral presentation”. In totaal werden 46 van dergelijke korte praatjes gebracht door collega’s. Dit houdt in dat je 10 minuten tijd krijgt om jouw onderzoek toe te lichten, met daarna nog 5 minuten extra om vragen te beantwoorden. Deze presentaties worden gebracht in sessies van 4 à 5 presentaties na elkaar, rond een bepaald thema.

Walk-in Mobile Home for Eating Disorders: One Year on The Road!

My name is Els Verheyen. I’m a clinical psychologist and social worker at a non-profit organization for people with eating disorders and their caregivers. In German you have the word “Angehörige” and maybe that’s a better description.

In this short presentation I would like to present you a world premiere. It is a prevention project in Flanders (in Belgium), which is called the “Inloopmobiel Eetstoornissen”, or translated in English as: the Walk-in Mobile Home for Eating Disorders. In German you could call it “das Mobiles Haus fur Essstörungen”. If you want, you can visit the Mobile Home later, because we brought it with us, all the way from Belgium. I will present you the results of the first year on the road. First of all, I will explain how it all started.

The self-help organization Anorexia Nervosa Boulimia Nervosa (in short: AN-BN) has started in 1980 as a self-help group for parents, by parents. Parents of people with eating disorders met a few times a year to share experiences. In the beginning there also was a telephone permanence and after a few years the services expanded with a website and an online forum for people with eating disorders.

In 2005 AN-BN opened a self-help centre in the centre of Leuven, a university city in the centre of Belgium. Since the opening we experienced some remarkable shifts: more people with eating disorders found self-help. Every week we see people who tell us for the first time they are wondering about having an ED.

Each year we analyze the results of our visitors. During the last few years we noticed some tendencies:

– more and more patients found support in our walk-in centre and on the internet

– caregivers were harder to reach, because of the distance or because of the opening hours (our self-help centre is opened on Wednesday afternoons and on Saturdays)

– we also found caregivers were more likely to make a phone call. When parents or partners made a phone call, they often talked about an hour or more. This points out they DID have a great need for charing their experience, even though they didn’t make it that easily to the self-help centre for face to face contact.

Because the self-help group originally started for parents by parents the organization decided to start a new project. When caregivers can’t come to Leuven, we could try to put the self-help centre on wheels and get it on the road.

This resulted in the Walk-in Mobile Home for Eating Disorders. It is a Fiat Ducato, which has been transformed in some kind of mobile self-help centre. As you can see, it has a corner where people can talk with our volunteers, there are books about eating disorders and we have a computer on board which enables it to give people information about professionals who work with eating disorder patients.

The project has three major aims:

First, the organization wants to inform the general public about eating disorders, risk factors, protective factors and options for treatment. We can call this primary prevention, because we want to target problem behaviors before they can happen.

Second, AN-BN wants to reach caregivers and patients before the illness has taken over their lives. We can call this secondary prevention, because the project can prevent the illness becoming worse and worse. The Walk-in Mobile Home is especially meant for those who are already afflicted with an eating disorder. In the past, our volunteers had the experience people wait too long before seeking help. Now we can motivate people already in an earlier stage to take steps on the road to recovery.

The third and last aim of the project is to provide the possibility of self-help contact at different locations in Flanders. Our self-help group is the only one in a region with approximately 6 million inhabitants.

As you can see, AN-BN is not the only organization which is active in the field of prevention of ED. We are working together with two other organizations. Eetexpert (Eating expert) is specialized in training teacher in a prevention program and they also support health care professionals. The other organization is the Flemish Academy for Eating Disorders, which brings together researchers and practitioners. Their first congres was just two weeks ago.

When we analyzed the results of one year on the road, we found the following results. In the period between September 2010 and August 2011 the Walk-in Mobile Home has been present on 78 activities. On these occasions 1464 people were reached. This is about 19 persons per activity. Most of the activities were in cities and eating disorder units. About 3 times a month the Walk-In Mobile Home drives to a city somewhere in Flanders to provide in information and support.

Hypothesis one: As we suspected, less patients came to the walk-in mobile home (about 10%). The step was too big to make for them, because some of them were afraid people would suspect they have an eating disorder. On the walk-in mobile home there’s “eating disorders” written all over it. But we also have our website and phone number on the sides, so even when people don’t dare to come in, they can find other ways to reach us.

Our second hypothesis was we would reach more parents, which you can see shows a statistically significant increase in visitors (comparison between visitors of the centre and visitors of the mobile-home). The third hypothesis was we would reach more caregivers in general and more people in the broader context of patients. This hypothesis was confirmed: most of the visitors were students (nurses, social workers and other health care professions) and people in the categorie “others or unknown”. This latter category has to be more specified in the future, because some people were family members like aunts and uncles, or neighbours.

The project had some unexpected side-effects, or maybe better: added benefits. Thanks to the walk-in mobile home we could network with all specialist ED units (of psychiatric hospitals) in Flanders. We have an arrangement with each of them, to provide information and self-help once a month or every two months.

On the first congres about ED in Flanders, just 2 weeks ago, there was an explicit attention for the perspective of patients and caregivers, which we can see as a huge accomplishment.

Also on the “knowledge day” for health care professionals, organized by “Eating Expert”, we had the opportunity to talk about the perspective of caregivers.

Another unexpected side-effect was the media attention. We had articles in magazines, we were on national television and on the radio and by this media attention people got to know our organization.

On the political level we saw for the first time some awareness. It wasn’t world changing, but the fact they talked about it was a step forward.

Besides this positive news, we also encountered some “bumps in the road”.

The first one was that we found it difficult to find new volunteers. We now work with a group of about 20 volunteers, all people who are (ex-)patients or family members or partners of people with an ED.

The second one was the work load: a new project brings many organizational aspects.

Another bump in the road is that our services are free and we provide them anonymously. This makes it hard to conduct research, e.g. to know what people do with the information and support they receive from our volunteers.

The last big bump in the road is the search for financial resources. We now had the chance some of our governments made a financial donation to start the project, but in the future we will have to search for manners to keep the Mobile Centre “on the road”.

For more information: you can contact me by e-mail, or take a visit to our website!

If you have any questions I would be happy to answer them!

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Abstract

On the road to recovery: a walk-in mobile home for eating disorders

In the dutch speaking part of Belgium, there is only one self-help group for people with eating disorders (ED) and their caregivers. AN-BN (Anorexia Nervosa – Boulimia Nervosa) started in 1980 as a volunteer organisation for parents, by parents. Over the years it evolved into an organisation for everyone who has questions about ED. AN-BN offers self-help contact, online information (www.anbn.be), an online forum, chat and a telephone permanence.

In 2005 AN-BN opened a self-help centre in Leuven, a university city in the centre of Belgium. From this moment on, AN-BN reached yearly approximately 400 persons face to face. Most of the visitors were people afflicted with ED (52% in 2010). For parents, brothers and sisters it seemed much harder to find the way to self-help (8%). Parents were more likely to make use of the telephone permanence (29% of all phone calls), and for a large amount of time (56% of the time volunteers talked with parents).

AN-BN and ED-specialists noticed people still wait too long to seek help or treatment (Preti, e.a., 2009). For this reason, AN-BN started with a new prevention and information project in September 2010: the Walk-in Mobile Home for Eating Disorders. The aim was to reach the overall population (general prevention), but especially those who may know someone with ED or who are at risk (indicated prevention). According to preliminary research 693 persons visited the Walk-in Mobile Home in 4 months time. We will present the results of one year “on the road”.

Auf dem Weg zur Heilung: ein mobiles “Haus für Essstörungen”

Im niederländischsprachigen Teil Belgiens gibt es nur eine Selbsthilfegruppe für Menschen mit Essstörungen (ES) und deren Umgebung. AN-BN (Anorexia Nervosa – Boulimia Nervosa) wurde 1980 gegründet als eine ehrenamtliche Organisation von und für Eltern. Im Laufe der Zeit entwickelte sie sich zu einer Organisation wo jeder mit Fragen zu ES vorbeikommen kann. AN-BN bietet Selbsthilfe-Kontakte, online Informationen (www.anbn.be), ein online Forum, ein Chat sowie eine Telefonpermanenz.

2005 eröffnete AN-BN ein Selbsthilfezentrum in der Universitätsstadt Leuven, eine Universitätsstadt im Zentrum Belgiens. Seitdem empfängt AN-BN jährlich etwa 400 Personen persönlich. Die meisten Besucher sind von ES betroffen (52% in 2010). Für Eltern und Geschwister erschien der Weg zur Selbsthilfe schwieriger (8%). Eltern neigten eher dazu, die Telefonpermanenz in Anspruch zu nehmen (29% der Anrufe) und führten dabei längere Gespräche (56% der gesamten Gesprächsdauer mit Eltern).

AN-BN und ES-Spezialisten stellten fest, daβ Leute noch immer zu lange warten mit Hilfe- und Therapiesuche (Preti, e.a., 2009). AN-BN hat somit September 2010 ein ganz neues Projekt zur Prävention und Information ins Leben gerufen : ein Mobiles Haus für Essstörungen. Ziel ist, die ganze Bevölkerung erreichen zu können (“general prevention”), vor allem aber die Leute die eine Person mit einer ES im Bekanntenkreis haben oder aber selbster zur Risikogruppe gehören (“indicated prevention”). Laut den ersten Forschungsergebnissen haben innerhalb von vier Monaten 693 Personen das mobile Haus für Essstörungen besucht. Wir werden die Ergebnisse von einem Jahr “auf dem Weg” präsentieren.