Parents Reflecting on Training of Families with Children on the Autism Spectrum: Lessons from ESIPP

Author(s):

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

Conference:

ECER 2017

Network:

14. Communities, Families and Schooling in Educational Research

Format:

Paper

Session Information

14 SES 04 A JS, Parents and Children with Autism: Lessons learned from Europe and Australia

Joint Paper Session NW 04 and NW 14

Time:

2017-08-23

09:00-10:30

Room:

K3.21

Chair:

Silvia Molina Roldán

Contribution

Traditional parenting styles are very often challenged by childhood disability, and autism spectrum disorders can often make parents feel deskilled and disempowered (Dunn et al., 2001). This is especially true when little information or support is available to them (Benjak, 2011), whereas providing accurate information and the education of parents on good practices in responding to the needs of their children has been shown to be effective in improving the lives of people with autism and families (Green et al., 2010; Kasari et al., 2010). Nevertheless, these kinds of support and opportunities are limited or non-existent in some parts of Europe, such as in the Balkans and south-eastern Europe (Demirok & Baglama, 2015; Stankova & Trajkovski, 2010; Delfos, 2010; Kulla & Gjedia, 2015; Salomone et al. 2015).

This paper reports on a three-year EU-funded project (September 2015-August 2018) in which family members, professionals and academics 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 (but locally adjustable and appropriate) parent autism training curriculum, materials and methods, to provide parent education in three of these countries, and to share those with stakeholders across Europe. Specifically, the paper focuses on part of the evaluation of the project, in which the consortium aimed at analysing parents’ views on the training they received.

Method

An exploratory case study methodology was adopted for the research parts of the project. 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. 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 instruments was obtained by the University of Northampton, the lead institution in the partnership. This paper presents part of the qualitative data of the project, looking specifically at the interviews with parents/family members who attended the first round of parent trainings offered by the project between March 2016 and November 2017 in three of the partner countries: Croatia, Cyprus and the Former Yugoslav Republic of Macedonia. Interviews with 15 parents who participated in the training in the three countries are currently being conducted following a three-month period after the end of the training seminars. In selecting the interviewees’ sample, an information cover letter identifying the purpose of the study and a consent form to participate in the interview process were given during the trainings. Parents who provided their written consent were contacted to participate in the interview and were asked to reconfirm their consent at the time of the interview. At the time of this proposal submission, the interviews are being conducted by members of the research team of the Project in the local languages. Interviews will be transcribed and analysed with the help of qualitative analysis software by researchers in Croatia, Cyprus, and the Former Yugoslav Republic of Macedonia. The coding scheme will be developed collaboratively by members of the research team from all three countries plus the University of Northampton with the intent of formulating core codes relevant for the coding of all participant data across countries as well as more locally pertinent codes in order to allow for the emergence of locally significant themes. Analysis will be checked for intercoder reliability among all members of the research team who will be involved in the coding process.

Expected Outcomes

The analysis of the interview data has not taken place yet. It is expected that the analysis will shed light on parents’/family members’ experience of living with autism, their experience with the training and their perception regarding dimensions related to the design, delivery, and content of the program, as well as factors related to the usefulness, practicality and implementability of the content and its influence on their daily lives. Such perceptions and experiences will be interpreted in light of participants’ own interpretations of their experiences of living with autism and will provide useful insight both into processes of program and impact evaluation which will continue as the programme develops, as well as discussions regarding questions of designing similar programs or initiatives aiming to address the needs, wants and experiences of families living with autism. Implications for the further development of the project are identified and discussed.

References

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. 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. 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. 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

Loizos Symeou (presenting / submitting)

European University Cyprus, Cyprus

Eleni Theodorou

European University Cyprus, Cyprus

David Preece

University of Northampton, UK

Jasmina Stošić

University of Zagreb, Croatia

Jasmina Troshanska

Macedonian Scientific Society for Autism

Katerina Mavrou

European University Cyprus, Cyprus

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