Listening to (empower) parents: family education for children on the autism spectrum in south-east Europe

European Research Network about Parents in Education (ERNAPE)
11th Biennial Conference: 'Intensification, constraint and opportunity: changing roles for parents, schools and communities. Addressing equity and diversity issues'.
5-7 July 2017, Whitelands College, University of Roehampton, London UK.

David Preece PhD¹, Loizos Symeou PhD^2, Jasmina Stošić PhD³, Eleni Theodorou PhD², Katerina Mavrou PhD², Jasmina Troshanska PhD⁴, Jasmina Frey Škrinjar PhD³, & Vladimir Trajkovski MD, PhD⁴

1. Centre for Education and Research. School of Education, University of Northampton

2. School of Arts and Education Sciences, European University Cyprus.

3. Faculty of Education and Rehabilitation Sciences, University of Zagreb.

4.  Macedonian Scientific Society for Autism.

Presenting authors: David Preece & Loizos Symeou

Abstract

General description: Autism challenges traditional parenting styles, and can make parents feel deskilled and disempowered, especially if little information or support is available to them.  Giving accurate information about autism to parents, and teaching them to adapt their parenting using good autism practice has been shown to be effective in improving personal, educational and social outcomes for individuals with autism and their families (Green et al., 2010). However, in some parts of Europe, such support is extremely limited or non-existent. 

This paper reports on a three-year EU-funded project (September 2015-August 2018) in which family members, professionals and academics are working together in a strategic partnership. The partnership’s objectives are to develop a core parent autism training curriculum/locally appropriate parent education materials and methods, to provide parent education in three south-eastern European countries, and to share the curriculum and materials with stakeholders across Europe.

Methods/methodology: The project is evaluated using a combined process and outcome evaluation methodology (Royse et al., 2009). This includes the use of quantitative methods (pre-training, post-training and follow up parent questionnaires, incorporating a validated Quality of Life scale), qualitative methods (parent interviews, trainer focus groups and trainer reflective diaries) and document analysis.

Findings: The paper presents an overview of the work undertaken by the partnership to date. This comprises a survey of parents (n=148) and the identification of the core curriculum (Preece et al., 2016), the development of the training materials and training teams, and the establishment of the parent training courses.

Initial parent training courses have been held in the three countries between March 2016 and March 2017. Findings are shared from the analysis of quantitative and qualitative data collected with regard to the experience of living with autism of these parents (n=approx. 120), the training and its impact. Implications for the further development of the project are identified and discussed.

Key words: parent education, family quality of life, autism.