WS – Assessing the Needs II

How to improve the quality of life of people with Williams Syndrome? Comment améliorer la qualité de vie des personnes porteuses du Syndrome de Williams? (04/2019 - 06/2022)

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Research projekt in collaboration with Dr. Elke Reutershahn (Clinical Pediatric, Head of Center for Diagnostic and Long-term care for WS patients, Helios Klinikum Duisburg, Germany) and Prof. Dr. Margrit Schreier (Jacobs University Bremen).

Initial Position

The project “How to improve the quality of life of people with Williams Syndrome?” immediately follows the "WS – Assessing the Needs I Challenges, Resources and Goals in Everyday Life with Williams Syndrome" project. The qualitative (1.800 pages transcript) and related quantitative data (N=31) obtained in 2017 from interviews with parents and professional companions are evaluated by a qualitative content analysis (Schreier, 2013).

Project Objectives

  • Preparation of empirical data for a handout / recommendation for WS family associations (French, German, English)
  • Conducting a workshop with the center for diagnostics and Long-term care for WS patients, Helios Klinikum Duisburg, Germany
  • Publication of key findings (empirical data, workshop) in a scientific journal

Conferences participated

Publications

  • Prosetzky, I., Danielsmeier, V. (2018): Buildung a Competence Center for Wiliams Syndrome at the Hochschule Zittau/Görlitz – Current Research, Teaching and Third Mission. ACC Journal, Vol. 24, Issue 3, DOI: 10.15240/tul/004/2018-3-010
  • Siegert, A.; Prosetzky, I. (2019): EAMHID-Congress to strengthen municipal cooperation between researchers, professional helpers, people with intellectual disabilities and their families. (in German) In: Wir üBer unS/Umschau. Zeitschrift des Bundesverbandes WBS. Heft 47, 40-43.
  • 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 Unpublished Bachelor-Thesis.
  • 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 Unpublished Bachelor-Thesis.

Project Funding

The project is funded by both French family associations, Autour des Williams und Fédération Williams France with € 46,000.

Bibliography

Schreier, M. (2013). Qualitative content analysis in practice. Los Angeles: Sage.

Contact

Project Lead

Foto: Prof. Dr. phil. Ingolf Prosetzky
Prof. Dr. phil.
Ingolf Prosetzky
Fakultät Sozialwissenschaften
Campus 02826 Görlitz
Furtstraße 2
Building I, Room 2.07
+49 3581 374-4287
person

Member of the Project Team and Ph.D. Candidate

Vera Danielsmeier

 

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