Being Part Of It: Parental Perspectives Informing The Development Of Parent Education In Autism In South-Eastern Europe

Author(s):

David Preece(presenting / submitting)Loizos Symeou(presenting)Katerina Mavrou Jasmina Stošić Jasmina Troshanska

Conference:

ECER 2016

Network:

14. Communities, Families and Schooling in Educational Research

Format:

Paper

Session Information

14 SES 10 B, Parents' Education and Effects in Their Children

Paper Session

Time:

2016-08-25

15:30-17:00

Room:

OB-Theatre B

Chair:

Linda Mary Hargreaves

Contribution

Autism can challenge traditional parenting styles, causing parents to feel deskilled and disempowered, especially when little information or support is available to them (Dunn et al., 2001) and impacting on parental well-being and quality of life (Benjak, 2011; Benjak et al., 2009; Mouzourou et al., 2011). The provision of accurate information about autism and teaching parents how to adapt their parenting using good autism practices has been shown to be effective in improving personal, educational and social outcomes for individuals on the autism spectrum and their families (Green et al., 2010;Kasari et al., 2010).

However, the literature suggests that autism awareness is generally low within the Balkans and south-eastern Europe (Demirok & Baglama, 2015; Stankova & Trajkovski, 2010) and parent education programmes or training opportunities are extremely limited or non-existent (Delfos, 2010; Kulla & Gjedia, 2015; Salomone et al. 2015).

A three year project has been established with funding from the European Commission’s Erasmus+ programme. With a lifespan from September 2015 to August 2018, this is a project in which teachers, academics, family members and non-governmental organisations from five European countries - Belgium, Croatia, Cyprus, the former Yugoslav Republic of Macedonia and the United Kingdom - are working together in a strategic partnership in order to:

develop a core curriculum and ecologically valid parent education materials and methods regarding parent education for families with children on the autism spectrum.
- This has been informed by a review of the literature regarding the impact of autism on the family; a review of extant parent models including (among others) the ‘TEACCH’ structured teaching approach (Mesibov et al., 2005) and the UK National Autistic Society’s EarlyBird model (Shields, 2001); and by surveying parents in the three countries concerning their perspectives. The curriculum and training materials are being designed in partnership with local trainers and parents to ensure that both content and process are locally appropriate and ecologically valid
establish parent education for families living with autism in the three south-eastern European countries
- A minimum of 18 training events (six per country) will take place over the project lifespan
- Quantitative and qualitative methods are being used to evaluate the impact of the provision of parent education on parental self-efficacy and quality of life
- Sustainability planning will ensure that parent education continues after the project ends
share the curriculum and materials with stakeholders throughout Europe.
- Project materials and other outputs will be available from its website.

Attempting to provide education about autism for parents and families without first seeking to ascertain their own views was considered as both inappropriate and unhelpful. Therefore a key first action of the partnership was to undertake a survey of families living with autism in Croatia, Cyprus and the former Yugoslav Republic of Macedonia with regard to their perceptions of their needs and priorities in this area. This presentation reports on the process and findings of this survey and discusses how these findings have informed the activity of the partnership.

Method

Methodology An exploratory case study methodology was adopted for this research, and a structured questionnaire format was identified as being the best way to survey parents across geographically-dispersed areas such as these. Research Instrument An anonymous structured questionnaire format was developed by the project team, initially in English as the common project language. Domains of training were initially identified by a review of the literature regarding parent training models (e.g. Beaudoin et al. 2014; Matson et al., 2009). After agreeing on a draft format, the questionnaire was translated into Croatian, Greek and Macedonian and piloted with parents of children with autism in each country. Further amendments were made to the questionnaire before it was distributed to parents (electronically and/or hard copy) in early November 2015. Sample The survey was undertaken in November 2015. Questionnaires were distributed by NGOs and universities within the strategic partnership to families living with autism in Croatia, Cyprus and the former Yugoslav Republic of Macedonia who were members of autism-specific parent groups and organisations. Questionnaires were distributed both as hard copies and electronically. A total of 253 questionnaires were distributed and 148 were returned: an overall response rate of 58%. Thirty per cent of returned questionnaires were from Croatia, 45% were from Cyprus, and 25% were from the former Yugoslav Republic of Macedonia. Response rate by country ranged from 51% in Cyprus to 76% in the former Yugoslav Republic of Macedonia. Ethics The research was undertaken in accordance with the British Educational Research Association’s Ethical Guidelines for Educational Research (BERA, 2011). Ethical approval for the study and the data collection instrument was obtained by the University of Northampton, the lead institution in the partnership. An information cover letter identifying the purpose of the study accompanied the questionnaire. Consent was interpreted by response to the survey Analysis Data from the questionnaires were entered into SPSS and Excel by researchers in Croatia, Cyprus and the former Yugoslav Republic of Macedonia. Data from the three countries were aggregated at the University of Northampton and were then re-analysed by the whole project team.

Expected Outcomes

This research identified high interest in parent training, with 89% of respondents wishing to participate in such events. Expressed interest was lowest (75%) in Croatia and highest (92%) in the former Yugoslav Republic of Macedonia. Respondents faced a number of potential barriers to participation. Parents’ work schedules were a major barrier, impacting upon almost 40% of respondents. Child care issues affected a quarter of the sample. The majority of respondents across all three countries favoured training sessions at the weekends. As a result of this, initial parent education sessions (beginning in spring/summer 2016) will follow a 2-day weekend training model. The survey identified considerable local variation regarding the required content of parent education. In total, parents identified a need for education regarding twenty-nine topics within six curriculum domains. Parents in the former Yugoslav Republic of Macedonia expressed a need for training in a much wider range of topics (n=21) than those in Croatia (n=12) or Cyprus (n=8). Five topics were identified as core to the parent education programme, having been prioritised by >60% of respondents in all three countries. These were: • Strategies for enhancing my child’s communication • Strategies on facilitating my child’s interaction with other children • Sensory integration and development • General information on behavioural management strategies • Identifying and/or developing socialization opportunities These topics address key problem areas in autism – social communication, social interaction, sensory differences, and behaviour management – and can be considered central to the parent education curriculum that will be developed within the project. Initial activity regarding the development of the content of the curriculum and the teaching materials therefore focused upon the five topics identified above. Evaluation will continue as the programme develops, and we will further report our preliminary findings regarding impact.

References

Beaudoin, A.J.; Sébire, G. & Couture, M. (2015) Parent training interventions for toddlers with autism spectrum disorder, Autism Research and Treatment, Article ID 839890, 15 pages. Benjak, T. (2011) Subjective quality of life for parents of children with autism spectrum disorders in Croatia. Applied Research in Quality of Life, 6, 91-102. Benjak, T. Gorka, Mavrinac, G.V. & Šimetin, I.P. (2009) Comparative study on self-perceived health of parents of children with autism spectrum disorders and parents of nondisabled children in Croatia. Croatian Medical Journal, 50, 403-409. Delfos, M. (2010) Autism in Bosnia-Herzegovina. Sarajevo: Universities Autism Expertise Group – UAEG. Demirok, M.S. & Baglama, B. (2015) Perspectives of Faculty of Education students on autism spectrum disorders in North Cyprus. Procedia – Social and Behavioral Sciences, 190, 399-408. Dunn, M. E., Burbine, T., Bowers, C. A. and Tantleff-Dunn, S. (2001) Moderators of stress in parents of children with autism. Community Mental Health Journal, 37, 39–52. Green, J., Charman, T., McConachie, H. et al. (2010) Parent mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial. Lancet, 375, 2152–2160. Kasari, C., Gulsrud, A., Wong, C. et al. (2010) Randomized controlled caregiver mediated joint engagement intervention for toddlers with autism. Journal of Autism and Developmental Disorders, 40, 1045–1056. Kulla, F. & Gjedia, R. (2015) The reality of education of children with autism in mainstream 9-year schools in Albania. Academic Journal of Interdisciplinary Studies, 4, 52-55. Matson, M.L., Mahan, S. & Matson, J.L. (2009) Parent training: A review of methods for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 3, 868-875. Mesibov, G.B., Shea, V. & Schopler, E. (2005) The TEACCH Approach to Autism Spectrum Disorders. New York: Kluwer. Mouzourou, C., Milagros Santos, R. & Gaffney, J.S. (2011) At home with disability: one family’s three generations narrate autism. International Journal of Qualitative Studies in Education, 24, 693-715. Salomone, E., Beranová, Š., Bonnet-Brilhault, F. et al. (2015) Use of early intervention for young children with autism spectrum disorder across Europe. Autism, April 2015, 1-17. Shields, J. (2001) The NAS EarlyBird programme: partnership with parents in early intervention. Autism, 5, 49-56. Stankova, T. & Trajkovski, V. (2010) Attitudes and opinions of employers, employees and parents about the employment of people with autism in the Republic of Macedonia. Journal of Special Education and Rehabilitation, 11, 16-30.

Author Information

David Preece (presenting / submitting)

University of Northampton, United Kingdom

Loizos Symeou (presenting)

European University Cyprus

Education Sciences

Nicosia

Katerina Mavrou

European University Cyprus, Nicosia, Cyprus

Jasmina Stošić

University of Zagreb, Croatia

Jasmina Troshanska

Macedonian Scientific Society for Autism

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