ElFamBe - A participatory research project at the KHSB

In May 2010 [1], the research project: Older parents and adult family members with disabilities at home - Innovative counselling and support services in the process of replacement (ElFamBe) was initiated at the Catholic University of Social Sciences in Berlin (KHSB).

ElFamBe focuses on the quality of life of aging parents ...

... whose adult children with disabilities live at their homes.

At the beginning of the project, there was no empirical data in Berlin that could be evaluated with regard to the life situations of parents and adult sons and daughters. Thus, a questionnaire survey was carried out in the first phase of the project. 2100 questionnaires were sent out of which almost 500 were filled out and returned. Details on the results of the survey can be found on the homepage of the university [2].

The aim of the project is to filter out how parents deal with change processes in their own aging process and what happens if they are no longer able to cope with their accustomed everyday life with their sons and daughters due to increasing physical limits and personal care requirements? What is the effect of breaking away from well-rehearsed support structures within the family and the immediate social environment? What needs do parents have in connection with the care and support of their adult relatives with disabilities? We try to get to the bottom of these sensitive and differentiated questions with empathy.

The "ElFamBe" project is based on participatory models (Wright 2010) and develops innovative support arrangements with the aim of improving the quality of life in families. The contact with the described families through the distribution of the questionnaires was made possible thanks to the institutions in the field of disability assistance. We established contacts with about 200 interested parents, to whom we regularly send letters to inform them about the latest developments. At the same time the parents are invited to events.

From March to the end of June 2012 and in the second project phase, theme cafés and parent cafés took place alternately in a Berlin district, close to home, at 14-day intervals. The topics discussed were proposed by the parents and determined by majority vote. Experts from local and cross-agency advisory and service structures were invited to discuss the topics. They are given the opportunity to present their specialist services so that parents can get a first impression of the support services on offer. At the same time, we - the employees in the project - learned from the parents' questions and reactions what they were actually concerned about.

Again and again we notice how responsible and caring they are. Parents want suitable and sustainable solutions for the future of their adult child with disabilities. This became particularly clear at the theme café: Living together and new forms of living.

An employee of a counselling centre for housing offers was a guest on this day. After she had presented her offer, parents revealed their thoughts and experiences in a lively discussion round. One obstacle for a possible departure of her adult son or daughter was that there was a big difference between theory and practice. Negative experiences and stories about housing agencies and housing offers lead to the fact that living together in a common household is clearly the better alternative. Parents say that often lack of personnel or the poor qualification of the personnel make the housing offers appear unreasonable. A beautiful residential building is of little help if personal help is not enough.

For many parents, the exchange about exemplary as well as unprecedented housing projects, which resulted from already collected experiences of the parents and word-of-recommendation, was important. Many parents also talked about acute crisis experiences caused by an illness or disability that led to emergency housing for the child. The ongoing discussion showed that they have a strong need to share their experiences in order to build on the knowledge of other parents.

At the next parents' meeting the topic "Crises and emergency management" followed. Experts were also invited. They clearly formulated that early crisis intervention or prevention was worthwhile. One mother replied that she had been looking for a place in a residential home for her 38-year-old daughter for more than eight years and that she did not know how to intensify this search. The confrontation with the different perception of the given situation led to a serious conflict. The parents feel under pressure, but do not find suitable alternatives that would allow a possible replacement. This pressure to replace so-called professionals burdens many and is experienced again and again in different contexts.

In the meantime, a reliable parents' group has formed within the framework of the parents' cafés, which regularly takes part in the group discussions on a topic-independent basis. This group has built trust through constant participation and is in regular contact with the members of the project team. The parents are strengthened by the joint meetings. Despite stirring discussions, they feel comfortable and recognize that their concerns about the future are justified. They are not alone with their questions. They describe themselves as looking for the right solution for them and their family.

In addition to the parents' events, individual family offers take place as part of student projects at the Catholic University of Social Sciences. Families voluntarily open their doors for students and receive new impulses for family life. The students in turn get to know the everyday life of the families and try out new methods of outpatient family support in consultation with the parents and under the supervision of the project staff.

In the meantime, the theme and parent cafés have been closed. The parents' café has been permanently installed as a regular discussion group. We receive repeated feedback from the cooperating institution that new parents are finding their way into this now independent moderated group. We are now in the evaluation phase within the framework of the project and will write and publish the results and developments in the form of a practical guideline for employees of the disabled help and also for parents. Furthermore, multiplier training courses will take place, for which interested parties are welcome to register. Further information can also be found on the homepage.

If you would like more information about the "ElFamBe" project and the current status of project developments, you can find out more on our homepage. You are welcome to contact us. We are always grateful for suggestions and information exchange.

Authors: Katja Driesener (BA curative teacher) and Dominique Heyberger (BA social work), research assistants in the project "Ageing parents and adult family members with disabilities at home" (ElFamBe), Katholische Hochschule für Sozialwesen Berlin, Köpenicker Allee 39 - 57 D - 10318 Berlin, Tel.: 030 / 50 10 10 742, E-Mail:dominique.heyberger@khsb-berlin.de oder katja.driesener@khsb-berlin.de, Homepage: http://www.khsb-berlin.de/forschung/aktuelle-projekte/elfambe/

Literatur:

• Köhncke, Ylva; Lindner, Peter (2009): Alt und Behindert, Wie sich der demographische Wandel auf das Leben von Menschen mit Behinderung auswirkt. Berlin-Institut für Bevölkerung und Entwicklung (Hrsg.) [http://www.berlin-institut.org/fileadmin/user_upload/Alt_behindert/Alt_und_behindert_online.pdf Stand: 11.05.2012].
• Senatsverwaltung für Integration, Arbeit und Soziales (Hrsg.), (2006): Bericht zur Lage der behinderten Menschen und der Entwicklung der Rehabilitation in Berlin - Behindertenbericht 2006, Berichtszeitraum: 2003 bis 2006. [http://www.berlin.de/imperia/md/content/sen-soziales/menschenmitbehinderung/behindertenpolitik/behindertenbericht_2006.pdf?start&ts=1276673884&file=behindertenbericht_2006.pdf Stand: 11.05.2012]
• Wright, Michael T. (Hrsg.) (2010): Partizipative Qualitätsentwicklung in der Gesundheitsförderung und Prävention. Bern: Huber.

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