This presentation reports on a survey of parents in Croatia, Cyprus and the FYR of Macedonia, which was undertaken to inform the development of parent training for parents of children with autism

Mavrou, Katerina

Preece, David

Stošić, Jasmina

Symeou, Loizos

Troshanska, Jasmina

NECTAR

This work has been submitted to NECTAR, the Northampton Electronic Collectionof Theses and Research.Conference or Workshop ItemTitle: Being part of it: a partnership for developing evidence­based parent education inautism in south­eastern EuropeCreators: Preece, D., Symeou, L., Mavrou, K., Stošić, J. and Troshanska, J.Example citation: Preece, D., Symeou, L., Mavrou, K., Stošić, J. and Troshanska, J.(2016) Being part of it: a partnership for developing evidence­based parent education inautism in south­eastern Europe. Paper presented to: European Conference onEducational Research (ECER) 2016, Dublin, 23­26 August 2016.Version: Presented versionhttp://nectar.northampton.ac.uk/8710/NECTARBeing Part Of It: A Partnership For Developing Evidence-based Parent Education in Autism in south-eastern EuropeDavid Preece1, Loizos Symeou2, Katerina Mavrou2, JasŵiŶa Stošić3, & Jasmina Troshanska41University of Northampton, United Kingdom; 2European University Cyprus, Nicosia, Cyprus; 3University of Zagreb, Croatia; 4Macedonian Scientific Society for AutismECER Conference, 23-26 August 2016, Dublin, IrelandAutism• Pervasive and lifelong developmental condition (American Psychiatric Association, 2013)• Associated with elevated parental stress (Hayes & Watson 2013) • Can negatively affect parental well-being and quality of life (Benjak ϮϬϭϭ; BeŶjak, MaǀƌiŶaĐ & ŠiŵetiŶ ϮϬϬ9; Mouzouƌou, Milagros & Gaffney 2011)• Other family members may also be impacted: • siblings (Petalas et al. 2012)• wider family (Margetts et al. 2006)• individuals with autism themselves (McCabe et al. 2013; Preece & Jordan 2010). 2015-1-UK01-KA204-013397 2Benefits of information about autism• Autism challenges traditional parenting styles:• can make parents feel deskilled and disempowered, especially when little information or support is available to them (Dunn et al. 2001)• Provision of accurate information and training:• can increase family adaptation and acceptance/improve personal, educational and social outcomes for individuals with autism and their families (Preece & Almond 2008; Green et al. 2010; Kasari et al. 2010)• Autism awareness:• generally low within Balkans and SE Europe (Demirok & Baglama 2015; Stankova & Trajkovski 2010)• support for families extremely limited or non-existent (Delfos 2010; Kulla & Gjedia 2015; Salomone et al. 2015). 2015-1-UK01-KA204-013397 3Equity and Social Inclusion through Positive Parenting (ESIPP)• Three year project • FuŶded ďy the EuƌopeaŶ CoŵŵissioŶ s͛ Eƌasŵus+ pƌogƌaŵŵe.• Professionals, academics and family members from across Europe working to:• develop a core parent education curriculum and context-appropriate materials and methods• provide and establish parent training for families living with autism in Croatia, Cyprus and the Former Yugoslav Republic of Macedonia (evaluating its impact using quantitative and qualitative methods)• share the curriculum and materials with stakeholders throughout Europe2015-1-UK01-KA204-013397 4The training• Initial training sessions have been led by trainers from Cyprus and the United Kingdom, supported by local trainers in Croatia and the FYR of Macedonia. • As the project develops, local trainers will lead the sessions without external support. • To date 60+ parents have received ͚Đoƌe͛ tƌaiŶiŶg.2015-1-UK01-KA204-013397 5What are we reporting on here today?• Our paper reports on an initial survey undertaken to identify the perspectives of families in the three participating countries regarding training• Before developing the parent education curriculum and materials, we felt it ǁas ǀital to asĐeƌtaiŶ paƌeŶts͛ ǀieǁs ƌegaƌdiŶg tƌaiŶiŶg, regarding both content and delivery• Reflects the need for cultural sensitivity and awareness in services for autism (Dyches et al. 2004; Perepa 2014; Wilder et al. 2004) 2015-1-UK01-KA204-013397 6Data collection tool (I)• AŶoŶyŵous stƌuĐtuƌed ƋuestioŶŶaiƌe to ideŶtify paƌeŶts͛ attitudes and opinions regarding both delivery of parent training (timing, length of sessions, potential barriers) and training content• Questionnaire design informed by review of the literature regarding:• parent training in autism (e.g. Bearss et al. 2013; Beaudoin, Sébire & Couture 2014; Matson, Mahan & Matson 2009; Roberts & Pickering 2010; Schultz, Schmidt & Stichter 2011)• pre-existing training models (e.g. McConachie et al. 2005; Oosterling et al. 2013; Shields 2001)2015-1-UK01-KA204-013397 7Data collection tool (II)• Twenty-seven training topic areas grouped within six domains:• Domain I: Awareness and general information• Domain II: Communication• Domain III: Specific approaches• Domain IV: Self-care and behaviour• Domain V: Socialisation and relationships• Domain VI: Leisure and recreation• Piloted in all 3 countries then distributed (electronically and/or hard copy) in autumn 2015.• EthiĐal appƌoǀal oďtaiŶed ďy the paƌtŶeƌship s͛ lead iŶstitutioŶ (the University of Northampton). 2015-1-UK01-KA204-013397 8Sample• Croatia: 83 families were surveyed with 44 responses (53% response rate)• Cyprus: 133 families-66 responses (51% response rate)• FYR of Macedonia: 50 families-38 responses (76% response rate)• Overall response rate: 266 families surveyed-148 responses (58% response rate)2015-1-UK01-KA204-013397 9Demographic characteristics of the sample• The majority of respondents were aged 31-50 with children aged 5-15 • The age range of children/young people was 1-24 years: over half were aged between 5 and 10 years. • Mean age of children across the whole sample was 9.8 years (SD=4.4)• Croatia: 10.1 years (SD=4.7)• Cyprus: 9.2 years (SD=4.2); • FYR of Macedonia: 9.8 years (SD=2.9). • IŶ just uŶdeƌ thƌee Ƌuaƌteƌs of Đases, the ƌespoŶdeŶt ǁas the Đhild s͛ mother.2015-1-UK01-KA204-013397 10Main findings (I)• Overall response rate (58%) and the number of families wishing to attend and participate in training (89%) suggests that providing parent training in autism would be of interest to many families• But…• Wide variation between the responses of the three sets of parents regarding training priorities, with statistically significant differences between countries in 13/27 topic areas across all six domains2015-1-UK01-KA204-013397 11Our main findings (II)• Five topics were identified as areas of interest for training by >60% of respondents across all three countries2015-1-UK01-KA204-013397 12Stƌategies foƌ eŶhaŶĐiŶg ŵy Đhild s͛ ĐoŵŵuŶiĐatioŶStƌategies oŶ faĐilitatiŶg ŵy Đhild s͛ iŶteƌaĐtioŶ ǁith otheƌ ĐhildƌeŶ Sensory integration and developmentGeneral information on behavioural management strategies Identifying and/or developing socialization opportunities Main findings (III)• Identified parental interest – particularly in Croatia and the FYR of Macedonia –regarding information about policy, legislation and rights• No ĐoŶseŶsus ƌegaƌdiŶg paƌeŶts͛ preferences on the training process, but majority of respondents across all three countries favoured training sessions at the weekends. 2015-1-UK01-KA204-013397 13Discussion-Conclusions (I)• The survey identified certain clear patterns among respondents to take into account in developing parent training:• significant interest in and demand from respondents in these countries for training in autism• a response to the paucity of support structures and information about autism noted in the literature and initial audit concerning all three countries (e.g. Mavrou 2011; Mouzourou, Milagros and Gaffney 2011)• confirms the activity of this strategic partnership to be worthwhile2015-1-UK01-KA204-013397 14Discussion-Conclusions (II)• It identified content which respondents consider most important to be included in parent training programmes• Common core of topics considered important by respondents across all three countries• Differing priorities between the three countries were highlighted:• may be understood in terms of differing availability of services, availability of support and societal structures in the three countries;• suppoƌts the pƌojeĐt s͛ iŶitial pƌeŵise – no single training model or curriculum appropriate across the three countries2015-1-UK01-KA204-013397 15Discussion-Conclusions (III)• Therefore, partnership agreed to prioritize training in 5 areas where >60% of respondents indicated interest• While also offering locally prioritized training where appropriate• Evaluation of the parent training • Questionnaires, semi-structured interviews with parents• Focus groups and reflective diaries (trainers)• Will evaluate process and content of training, including all issues identified in the initial survey2015-1-UK01-KA204-013397 16DisclaimerThe European Commission support for the production of this publication does not constitute an endorsement of the contents which reflects the views only of the authors, and the Commission cannot be held responsible for any use which may be made of the information contained therein.2015-1-UK01-KA204-013397 17

Being part of it: a partnership for developing evidence-based parent education in autism in south-eastern Europe

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