The impact of ASD on Macedonian families and their experience of parent education

Abstract

Introduction. Autism spectrum disorder (ASD) is identified as having a significant impact on family life. Educating parents of children with ASD about the condition benefits both child and family. However, such programmes are typically unavailable in South-east Europe. Aims. To address this, the ESIPP project was established to develop and provide parent education (PE) for Croatian, Cypriot and Macedonian families, training 335 family members in total. A parent education curriculum and locally differentiated materials were developed, as well as recommendations for European policymakers. This paper presents the findings of the study regarding the 70 Macedonian family members. Methodology The project was evaluated using a mixed methods programme evaluation methodology in which families were surveyed regarding their experience of family life and the impact of parent education. Pre-PE (n=70) and post-PE questionnaires (n=42) were completed, and semi-structured interviews were undertaken (n=16). Findings. Key findings relate to the impact of ASD on quality of life, families’ experience of stigma and isolation, the inadequacy of professional support and the importance of family support. The benefits of PE and its positive impact on parental happiness and relational issues are identified, as is the need for continued parent and professional education regarding ASD.