14 SES 14 B, Parent Education and Family Involvement with Children with Autism and Disabilities
Autism spectrum disorder (ASD) is a pervasive and lifelong developmental disorder, characterised by difficulties in social interaction and communication, restricted and repetitive interests and sensory sensitivities. The presence of these difficulties can impact significantly not only upon the individual with ASD but also on their family (Mouzourou et al., 2011; Petalas et al., 2013). In particular, parents may find that their natural parenting strategies and styles are not effective with their children with ASD, leading to poor outcomes for children and families alike. Conversely, providing accurate information and effective strategies to parents has been shown to impact positively on the child’s development, family quality of life, and family social inclusion (Cutress and Muncer, 2014; Farmer and Reupert, 2013).
Parent education is a crucial tool in providing such information and strategies. However, such provision is extremely limited and difficult to access – or non-existent – within some parts of Europe, including the Balkan and the south-east region. In order to address this issue, this three-year Erasmus+ Strategic Partnership was developed, running from September 2015 to August 2018. A partnership of academics, professionals and family members from Belgium, Croatia, Cyprus, the Former Yugoslav Republic of Macedonia and the United Kingdom have worked together to undertake the project. Following a review of the literature (Preece & Trajkovski, 2017) and a needs analysis within Croatia, Cyprus and the Former Yugoslav Republic of Macedonia (Preece et al, 2017) a core parent education programme and locally differentiated training materials were developed for these three countries. Local trainers were trained to deliver the programme and five cohorts of parents (n = c300) attended parent education courses within the three countries between March 2016 and March 2018. This paper reports upon parental perspectives regarding living with ASD and the impact of the parent education programme upon their lives.
An exploratory case study methodology was adopted for the research aspects of the project, with the project being evaluated via a combined process and outcome evaluation methodology (Royse et al., 2009). This mixed methods methodology comprised both quantitative methods – pre-training, post-training and follow-up parent questionnaires, incorporating a validated Quality of Life scale (Hoefman et al., 2014) and qualitative methods – semi-structured parent interviews, trainer focus groups, 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, and in accordance with partner’s national requirements. This presentation reports upon the semi-structured interviews undertaken with parents/family members who attended the parent education programme in Croatia, Cyprus and the Former Yugoslav Republic of Macedonia. Interviews have been undertaken three months after attendance. Data analysis has currently been undertaken with regard to the first three cohorts of parents ( n = 26); data for all interviews will be completed by the time of the conference (n = approx. 45). A purposive sampling strategy has been used to identify families for interview across a range of dimensions (e.g. age of child, diagnosis of child, number of adults in family). Parents attending the programme were provided with an information cover letter identifying the purpose of the study and a consent form regarding the interviews. Parents selected for interview were asked to reconfirm consent prior to interviews taking place. Interviews were carried out by members of the project research team in the parents’ first languages. Data gathered in the interviews have been transcribed and analysed with the help of computer-assisted qualitative data analysis software by researchers in Croatia, Cyprus, and the Former Yugoslav Republic of Macedonia. The coding scheme has been developed collaboratively by members of the research team from all three countries, plus the University of Northampton. A provisional initial codebook was developed, comprising core codes relevant to all three countries plus locally-relevant codes for each country. Coding has been an iterative process, as data from each cohort across the three countries has been analysed. Analysis has been checked for inter-coder reliability among all members of the research team who have been involved in the coding process.
At the time of writing, data from interviews with parents from the first three cohorts of parents in Croatia (n = 7), Cyprus (n = 8) and the Former Yugoslav Republic of Macedonia (n = 11) have been analysed. Parents have identified the changes that the presence of ASD brought to their lives: they identified the way that family life became focused around the child with ASD and their needs, the impact of the child’s prolonged and continued dependence, and the experience of burnout. Social exclusion and discrimination is commonly experienced, and formal support services are identified as being insufficient and inadequate, though generally positive relations with the child’s teacher are reported. The extended family is identified as a source of support, with grandparents in particular taking on a significant caring role. Parents expressed positive experiences of ESIPP seminars and gave positive feedback about the content, the instructors and the style of presentation, and families had been able to use strategies learned on the programme into daily life. In addition, a number identified that the ESIPP programme was an opportunity to meet, gain support and learn from other parents. These themes above represent the findings from the first three cohorts and may change as further data are analysed. Implications of our findings regarding parent education and policy and practice in these countries will be discussed.
Cutress, A.L. & Muncer, S.J. (2014): Parents’ views of the National Autistic Society’s EarlyBird Plus Programme, Autism, 18(6), 651–657. Farmer, J. & Reupert, A. (2013): Understanding autism and understanding my child with autism: an evaluation of a group parent education program in rural Australia, Australian Journal of Rural Health, 21 (1), 20-27. Hoefman, R. Payakachat, N., van Exel, J., Kuhlthau, K., Kovacs, E., Pyne, J. & Tilford, J.M. (2014) Caring for a Child with Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol. Journal of Autism and Developmental Disorders, 44(8), 1933-1945. Mouzourou, C., R. Santos, and J. S. Gaffney. 2011. “At Home with Disability: One Family’s Three Generations Narrate Autism.” International Journal of Qualitative Studies in Education, 24 (6), 693–715. Petalas, M. A., R. P. Hastings, S. Nash, D. Reilly, and A. Dowey. 2012. “The Perceptions and Experiences of Adolescent Siblings Who Have a Brother with Autism Spectrum Disorder.” Journal of Intellectual and Developmental Disability, 37 (4), 303–314. Preece D., Symeou, L., Stošić, J., Troshanska, J., Mavrou, K., Theodorou, E., & Frey Škrinjar, J. (2017) Accessing parental perspectives to inform the development of parent education in autism in south-eastern Europe. European Journal of Special Needs Education, 32(2), 252-269. Preece, D. & Trajkovski, V. (2017) Parent education in autism: a literature review. Croatian Review of Rehabilitation Research, 53(1), 118-128. Royce, D., Thyer, B.A. and Padgett, D.K. (2015). Program Evaluation: an introduction to an evidence-based approach. 6th edition. Boston MA: Brooks Cole.
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