Capturing the voices of parents: needs, experiences and perspectives of post-diagnostic parent training in an ASD assessment and intervention service

Abstract

Aims: This research explores the needs, experiences and perspectives of parents who attended post-diagnostic parent training, following a diagnosis of Autism Spectrum Disorder (ASD) for their child. The research sought to address a number of key areas of the parent post-diagnostic experience, namely:

• What are parents’ perspectives of their training needs following a diagnosis of ASD for their child? • What are parents’ self-reported experiences of post-diagnostic parent training in an ASD service? • What are parents’ perspectives on taking part in post-diagnostic parent training?

Method: A mixed-methods, exploratory, case-study methodology was employed to examine the transition from diagnosis to post-diagnosis for parents undertaking postdiagnostic training as an intervention strategy within a disability service context in Ireland. The experiences and perceptions of parents were accessed via pre- and posttraining questionnaire. Semi-structured interviews were utilised to gain a deeper insight into parents’ perspectives. A total of 57 parents attended the post-diagnostic training. 39 parents agreed to participate in the research study. 25 were mothers of children with ASD, while 14 fathers participated. Of the participants’ children, 24 were male and 15 were female. The mean age of child on receipt of diagnosis in this study was 8.5 years of age. The mean age of the child at the time of the training programme was 9 years. Five parents participated in the semi-structured interviews. Of these, 4 were mothers and 1 was a father. Thematic analysis was used to analyse the qualitative data, while paired sample t-tests were used to analyse the pre- and post-intervention questionnaires.

Results and Conclusions. Parents’ self-rated knowledge of ASD significantly improved from pre-training to post-training. Parents stated a clear desire to receive knowledge on specific areas, mental health, and telling about the diagnosis. There was a significant increase in parents’ self-reported ratings of their understanding of ASD. Parents’ selfreported skills in managing their child’s needs also increased significantly from pretraining to post-training. Quantitative and qualitative data both show evidence of gains in confidence in the areas of supporting the needs of the child and also, in parenting the child.