Exploring the Experiences of Parents who provide Behavioural Interventions to their Autistic Child

This thesis used qualitative methods to explore the experiences of parents who deliver Applied Behaviour Analysis-based interventions to their children who have autism. The thesis reports the findings of 4 studies that each present a different insight into parental experiences. The first study used a systematic review with a narrative synthesis to review seven articles to gain a better understanding into how parents’ experiences were portrayed in the psychological literature. In this review, there were four important factors highlighted by parents. Parents acknowledged the educational impact of not being educated and trained in delivering the intervention. Parents expressed challenges to intervention delivery with a lack of financial support and time constraints negatively impacting parents’ wellbeing. Parents also had positive and negative experiences of building relationships with providers. However, parents eventually developed a positive experience with the intervention, and this enabled their child’s development to improve and for their child to have a better quality of life. The second study then used a Critical Thematic Analysis to examine how parental accountability was constructed within the documentation. Data were collected from guidance documentation that was freely available on websites and autism charities. The documentation consisted of journal articles, blogs, information booklets as well as website resources. There were three important factors highlighted and one of these factors was parental accountability. Parents were accountable in the intervention process as they were expected to invest in time and receive education about delivering the intervention. Guidance documentation also highlighted what support was available for parents as they were encouraged to read books and access advice and guidance about the intervention. The analysis evidenced the efficacy of the intervention by acknowledging that the intervention can target multiple areas of development as well as focusing on the child’s strengths to help them reach their full potential. Parents also had opportunity for choice, and this reflected the personalised focus of the intervention accommodating the family’s needs. In the third study, semi structured interviews were conducted with 12 mothers about their ABA-based intervention journey. More specifically, the interview invited the mothers to share their experiences of diagnosis to seeing changes from the intervention. Interpretative Phenomenological Analysis was used to develop 3 General Experiential Themes (GETs) from the interviews; The battle to establish ABA-based interventions, challenges in maintaining relationships and embracing support of ABA tutors. The GETs acknowledged that parents at the start of their journey were unsupported as they had to educate themselves and find financial support. Parents also had to self-manage the negative relationships they encountered between the school and the LA. However, once parents had the ABA-based intervention in place, they were able to see positive improvements in their child’s development and the wellbeing of the wider family. Finally, the fourth study used semi structured interviews combined with photo elicitation to explore the day-to-day experiences of 6 mothers who were delivering the intervention. The 6 mothers collected photographs over a 3-month period which they felt captured their experiences. Interpretative Phenomenological Analysis was used to develop 2 General Experiential Themes (GETs) from the interviews; ’It’s not like oh you pay the tutor, and you are done, it’s not the case’; the forever enduring experiences and ’It has definitely changed our lives, we have a lot more positive experiences now’; embracing positivity. The findings acknowledged parents' concerns of the time commitment and finding funding to delivering the intervention. However, parents were able to reflect on their positive experiences when they could see improvements in their children’s development and the positive impact on parental wellbeing. The findings from these studies demonstrate that there is limited support available for parents and that parents are often alone trying to learn ABA, battle financial difficulties, and make time to deliver ABA-based interventions, all whilst supporting their child. The research provides further evidence that future research is needed to raise awareness of the challenges parents face. This would enable parents to have a voice over their experiences and to help facilitate the accessibility of support services for parents delivering ABA-based interventions.