WS – Assessing the Needs II

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).

• 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

• Danielsmeier, V.. What do you need? How do you cope? Including everyday experience of patients and their professional caregivers in the development of suited health care programs for rare diseases. Nationale Konferenz zu seltenen Erkrankungen, 26.-27.09.19, Berlin (Poster).
• Prosetzky, I.: Towards a tailored support for Williams syndrome. Learning from individual everyday life experience. A holistic multiperspective mixed methods study am 17.12.2019, Seattle Club Conference, University College London (Vortrag).
• 12. European Congress of Mental Health in Intellectual Disability, EAMHID, 23.-25.05. 2019, Barcelona (Teilnahme).

• 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 Unpublished Bachelor-Thesis.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 Unpublished Bachelor-Thesis.

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

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