Junior Research Group »WBS in Resonance«

Junior Research Group »WBS in Resonance«

Leiter

Prof. Dr. phil.

Ingolf Prosetzky

Ingolf.Prosetzky(at)hszg.de

Fakultät Sozialwissenschaften

02826 Görlitz

Furtstraße 2

Building I, Room 2.07
2. Obergeschoss

+49 3581 374-4287

4 pictures showing 3 children and an adult woman with WS — Individuals with Williams-Syndrom (Courtesy of the Williams Syndrome Association, USA)

Williams Syndrome

Williams Syndrome (WS) is a rare neurodevelopmental disorder caused by a deletion of ~26 genes on chromosome 7q11.23 (Hillier et al., 2003), which occurs in 1 of 7,500 live births (Strømme, Bjørnstad, & Ramstad, 2002). The WS phenotype is typically associated with moderate intellectual disability, specific “elfin” facial structure and physical anomalies cardiac problems, hyper social behavior, anxieties, and a need for lifelong support (Pober, 2010, Royston, Waite & Howlin, 2019). The WS belongs to the group of rare diseases (according to the European Union if less than five out of 10,000 people are affected).

Need for non-medical intervention research

Current research focuses mainly on clinical characteristics, thus providing important implications for medical management. Parents, therapists and professional caregivers are able to find very few usable implications for everyday-life challenges though.
Who we are

The junior research group »WBS in Resonance« was founded in 2016 by Ingolf Prosetzky and Vera Danielsmeier at the HSZG. The term "resonance" stands for an intersubjective "attunement" that is a central aspect of experience for individuals with WS (Prosetzky, 2014). The core group consists of students from the Bachelor's course in Special needs education/Inclusion studies.
What we want and do

The focus of our work is the evaluation of current international research publications, the development of non-medical theoretical and empirical research approaches, the writing of qualifying theses, global networking with other researchers and the implementation of regional theory-practice transfer projects. The long-term goal is the establishment of a pedagogical competence and advice centre for WS in Görlitz.
Partner

There is close cooperation with the National German WS-Association. Prof. Prosetzky has been a member of the association's scientific advisory board since 2016. An exchange takes place via the association journal, regional, nationwide and international meetings.

National German WS Convention May 2017 in Willingen, conducting interviews in the project "Challenges, Resources and Goals in Everyday Life with Williams Syndrome – Assessing the Needs for Tailored Support"

Help with registration for the Regional WS conference on the Görlitzer university campus, May 2019

Current activities

Completed activities

Degree and qualification work

Literature

Doctoral thesis Vera Danielsmeier "Herausforderungen, Chancen und Ziele von Personen mit Williams-Beuren-Syndrom – Eine Erfahrungs- und Bedarfsanalyse für zugeschnittene Unterstützungsangebote" (Cooperative Promotion between HSZG, Universität Bremen und Jacobs University Bremen)
Development of new WS educational guidelines for teachers and parents
Development, programming and design of two apps to support children and adolescents with the WS (02/2020-12/021)
- Project lead: Prof. Dr. Ingolf Prosetzky and Thomas Dubiel (www.kruemelkiste-app.de), stud. assistants: Sonja Jähnig, Martin Stekkler
- Project partner: Williams-Beuren-Syndrom Bundesverband e.V., Prof. Dr. Matthias Längrich and students from Faculty of Electrical Engineering and Computer Science
- Funding: AOK PLUS - Die Gesundheitskasse für Sachsen und Thüringen

II. WS Regional Conference/Family meeting at the HSZG, 10.-11. May 2019 in Görlitz: „ My friend must be a heating!“ – Friendship, Loneliness and Social Vulnerability (Engl. Program)
I.WS Regional Conference/Family meeting at the HSZG, 20.-22. April 2018 in Görlitz
Danielsmeier, V.; Prosetzky, I. (2018): WBS-Familientreffen und Fachtagung an der Hochschule Zittau/Görlitz. In: Wir üBerunS/Umschau. Zeitschrift des Bundesverbandes WBS. Heft 46, S.78-79.
Danielsmeier, V. (2018): „Ich sehe was, das Du nicht siehst“. Welche Rolle spielen Emotionen bei der Fähigkeit die Perspektive Anderer einzunehmen? In: Wir üBer unS/Umschau. Zeitschrift des Bundesverbandes WBS. Heft 46, S.37-39.
Danielsmeier, V. (2017): Towards a tailored support for Williams Syndrome. Learning from individual everyday life experience A holistic multiperspective Mixed Methods study. International Meeting on Williams-Beuren Syndrome "Building our Future". 10.-11.11.2017, Genral Hospital La Paz Madrid (Poster).
Danielsmeier, V. (2017): Understanding Auditory Aversions in Williams Syndrome. A Longitudinal Mixed Methods Approach. International Meeting on Williams-Beuren Syndrome "Building our Future". 10.-11.11.2017, Genral Hospital La Paz Madrid (Poster).
Danielsmeier, V. (2017): Wie erleben Personen mit Williams-Beuren-Syndrom Ängste gegenüber Geräuschen? 13. Berliner Methodentreffen Qualitatve Forschung, 21.-22.07.2017, Freie Universität Berlin (Poster).

2020

Jähnig, S. (2020) Conception of an APP for the prevention of social violence against people with Williams Syndrome. HSZG. Unveröff. Bachelor-Thesis.

2019

Hölzel, C. (2019): "And the world already looks different for us!" A qualitative study about what mothers and fathers have learned from their child with Williams Syndrome. (in German) HSZG. Unpublished Bachelor-Thesis.
Siegert, A. (2019): Quality of life for people with intellectual disabilities. Friendship as a "gateway to the world"!? (in German) HSZG. Unpublished Master-Thesis.
Warschau, I. (2019) "I'm not alone with it!" How do fathers experience and manage the diagnosis of WBS in their child?" (in German) HSZG. Unpublished Bachelor-Thesis.

2018

Huppe, S. (2018): The personality of individuals with the WBS from the perspective of professional companions in an open description. (in German) Universität Bremen. Unpublished Master-Thesis.
Köhncke, L. (2018): The self-image of people with WS from the perspective of professional companions. (in German) Universität Bremen. Unpublished Master-Thesis.
Köster, T. P. (2018): The challenges and opportunities of pedagogical work with people who live under the conditions of WS - Interviews with caregivers. (in German) Universität Bremen. Unpublished Master-Thesis.

2017

Pestrup, M. (2017): What coping strategies are used by individuals living under the conditions of WS? An exploration study from the perspective of professional companions. (in German) Universität Bremen. Unpublished Master-Thesis.
Wrieden, A. (2017): To understand stresses in the context of adolescence of individuals who live under the conditions of WS - Advice from the perspective of professional companions. (in German) Universität Bremen. Unpublished Master-Thesis.

Hillier, L. W., Fulton, R. S., Fulton, L. A., Graves, T. A., Pepin, K. H., Wagner-McPherson, C., ... & Minx, P. (2003). The DNA sequence of human chromosome 7. Nature, 424(6945), 157-16

Pober, B. R. (2010). Medical progress: Williams-Beuren syndrome. New England Journal of Medicine, 362(3), 239-252. doi:10.1056/NEJMra0903074

Prosetzky, I. (2014). Mehr als die Summe seiner Symptome: Zur kulturhistorischen Neuropsychologie und Pädagogik des Williams-Beuren-Syndroms. Schriftenreihe International Cultural-historical Human Sciences: Vol. 48. Berlin: Lehmanns.

Royston, R., Waite, J., & Howlin, P. (2019). Williams syndrome: recent advances in our understanding of cognitive, social and psychological functioning. Curr Opin Psychiatry, 32(2), 60-66. doi:10.1097/YCO.0000000000000477

Strømme, P., Bjømstad, P. G., & Ramstad, K. (2002). Prevalence estimation of Williams syndrome. Journal of child neurology, 17(4), 269-271.