Equity and Social Inclusion through Positive Parenting (ESIPP). CONTEXT Autism is a lifelong condition which affects about 1% of the population (or approximately 7.5m European citizens) as well as those who live with them and care for them. The presence of autism can be extremely challenging to parents and other family members, and autism has been identified as causing greater family and parental stress than any other disability. The condition can challenge traditional parenting styles and cause parents to feel deskilled and disempowered. The presence of autism within the family can negatively affect the educational achievement, employment opportunities and social inclusion of mothers, fathers, siblings and the individuals with autism themselves. Teaching parents to understand the condition, and to work effectively with schools and other professionals, has been shown to be effective in improving outcomes for individuals with autism and their families. However, though such parent education programmes have been developed in e.g. Western Europe and the USA, there is little or no availability of such programmes or materials in many areas within Europe, for example in the Balkan/Eastern Mediterranean region. OBJECTIVES In order to address this inequity, a strategic partnership has been developed involving universities, non-governmental organisations and the parents of children with autism to: -develop an evidence-based model for delivering parent education in autism that can be used across Europe - develop a core curriculum and ecologically valid parent education training materials - use these materials to provide parent education to families living with autism in areas where it has been previously unavailable - evaluate the effectiveness of the materials and the impact of the training using quantitative and qualitative data collection and analysis - share the model curriculum, tools and materials with stakeholders and make recommendations to policy- and decision-makers. PARTNERS There are nine partners in the strategic partnership. These are: - the University of Northampton (United Kingdom) - the University of Zagreb (Croatia) - the European University (Cyprus) - Target Autism Training and Consultancy (United Kingdom) - Centar za Autizam (Croatia) - The Centre of Development and Support for Children and Teenagers - Autism Assessment Support Practice (Cyprus) - Macedonian Scientific Society for Autism (Republic of Macedonia) - Autism Concern (United Kingdom) - Autism-Europe (Belgium). ACTIVITIES Eighteen parent training events will be held over the lifetime of the project, six each in Croatia, Cyprus and the Republic of Macedonia. Local trainers will be supported by experienced experts to develop their skills so that the training programmes can become self-sufficient and continue beyond the lifetime of the project. Four parent/professional conferences will be held - in Croatia, Cyprus, the Republic of Macedonia and the United Kingdom - to share the teaching materials with and obtain feedback from wider groups of parents and professionals, as well as providing learning opportunities. The partners in the project will also present at national and international conferences (e.g. Autism-Europe International Congress, 2016) as well as producing academic reports and academic articles. METHODOLOGY The project undertaken by this Strategic Partnership will utilise a collaborative, action-based and stakeholder-empowering methodology, using mixed methods of data collection and analysis. The project has been designed to use methods which will realise practical, real world outcomes. RESULTS EXPECTED AND LONGER-TERM BENEFITS The final evidence-based model, curriculum and learning materials will be made available via the Erasmus+ dissemination platform, as well as via the individual partners and project website. Helping parents to understand their children with autism and to effectively manage their behaviour will have significant benefits regarding social inclusion, quality of life, educational achievement, employment and equality of opportunity. as such, this project will contribute to the development of a more equitable and socially inclusive Europe in both the short, medium and long terms.
2.1.1. CONTEXT Autism is a lifelong condition which affects about 1% of the population (or approximately 7.5m European citizens) as well as those who live with them and care for them. The presence of autism can be extremely challenging to parents and other family members, and autism has been identified as causing greater family and parental stress than any other disability. The condition can challenge traditional parenting styles and cause parents to feel deskilled and disempowered. The presence of autism within the family can negatively affect the educational achievement, employment opportunities and social inclusion of mothers, fathers, siblings and the individuals with autism themselves. Teaching parents to understand the condition, and to work effectively with schools and other professionals, has been shown to be effective in improving outcomes for individuals on the autism spectrum and their families. However, though such parent education (PE) programmes have been developed in e.g. Western Europe and the USA, there was little or no availability of such programmes or materials in many areas within Europe, such as parts of South East Europe. 2.1.2. OBJECTIVES To address this inequity, a strategic partnership was developed involving academics, practitioners and the parents of children on the autism spectrum to: - develop an evidence-based model for delivering parent education in autism that can be used within the project’s target countries and beyond - develop a core curriculum and locally appropriate parent education training materials - use these materials to provide parent education to families living with autism in areas where it was previously unavailable - evaluate the effectiveness of the materials and the impact of the training using quantitative and qualitative data collection and analysis - share the model curriculum, tools and materials with stakeholders and make recommendations to policy- and decision-makers. 2.1.3. PARTNERS There were nine partners in the strategic partnership. These were: - University of Northampton (United Kingdom) - Faculty of Education and Rehabilitation Sciences, University of Zagreb (Croatia) - European University Cyprus (Cyprus) - Target Autism Training and Consultancy (United Kingdom) - Centar za Autizam (Croatia) - Autism Assessment Support Practice (Cyprus) - Macedonian Scientific Society for Autism (FYR of Macedonia) - Autism Concern (United Kingdom) (to November 2017) - Autism-Europe (Belgium). 2.1.4. ACTIVITIES - An initial mapping activity in Croatia, Cyprus and the FYR of Macedonia identified parental priorities regarding training content and process (Preece et al., 2017). - Based upon this activity, a review of relevant literature (Preece & Trajkovski, 2017) and the expertise and skill-base of experts in the partnership, the curriculum and materials were developed. - Five cohorts of parents in each of the three counties were trained between March 2016 and March 2018, a total of 335 parents in eleven regions. - A total of 17 local trainers were supported by experienced experts to develop their skills as parent educators. - Recommendations for policymakers regarding parent education were developed. - Four multiplier events were held - in Croatia, Cyprus, FYR of Macedonia and the UK - to share the teaching materials with and obtain feedback from wider groups of parents and professionals. - The project was presented at national and international conferences not only in the project countries but in ten further countries and academic reports and articles were also produced. 2.1.5. METHODOLOGY The ESIPP project utilised a collaborative, action-based and stakeholder-empowering multiphase mixed methods methodology (Creswell & Plano Clark, 2011). It was evaluated via an evidence-based programme evaluation approach (Royse et al., 2016) using mixed methods of data collection and analysis. The project was designed to use methods appropriate to realise practical, real world outcomes. 2.1.6. RESULTS EXPECTED AND LONGER-TERM BENEFITS The final evidence-based model, curriculum and learning materials (in Croatian, English, Greek and Macedonian) is made available via the Erasmus+ dissemination platform, as well as via the individual partners and project website. The policy recommendations are provided in Croatian, English, French, Greek and Macedonian. Helping parents to understand their children with autism and to effectively manage their behaviour will have significant benefits regarding social inclusion, quality of life, educational achievement, employment and equality of opportunity. It is intended that this project will contribute to the development of a more equitable and socially inclusive Europe in both the short, medium and long terms. Sustainability activity within Croatia, Cyprus and the FYR of Macedonia is intended to ensure the continuation of parent education within those settings.