Being a Mother of a Child with Prader-Willi Syndrome: Experiences of Accessing and Using Formal Support in Croatia

Abstract

The aim of this qualitative study is to obtain insight into the experiences of mothers of children with PWS with the formal support system in Croatia. The study was conducted in 2013 with five mothers of children with PWS. Thematic analysis was used as the analytic method. The results highlight four major themes related to mothers’ experience of accessing and using formal support: professionals’ lack of knowledge about PWS results in living without support; professionals’ lack of empathy; professionals’ commitment to improve the well-being of families; and getting support through membership in the Association of Persons with PWS Croatia. The social support in Croatia is defined by the lack of knowledge and lack of empathy of professionals, which results in disrespect for the human rights and dignity of children with PWS. Raising the awareness about PWS is crucial for improving the quality of life of families living with PWS.

Keywords

• Mothers of children with PWS
• Social services
• Health care system
• Living with rare disease