Understanding Before Action: Barriers and Facilitators for Parents of Autistic Children’s Participation in Research

Abstract

Abstract Parenting is both a rewarding and challenging endeavour. Parents of autistic children tend to report lower levels of well-being and higher stress levels compared to parents of non-autistic children. Parent training interventions have been developed to improve parental well-being and decrease autistic youths’ challenging behaviours. To deliver effective and socially meaningful interventions, it is imperative to consider their feasibility, uptake, and acceptability from parents’ perspectives. The present study aimed to understand the barriers and facilitators of research involvement for parents of autistic youth. We used a survey design with qualitative and quantitative components to gather information from parents. Results suggest that logistical concerns that interfere with one’s ability to participate in research (e.g., time constraints, scheduling issues, and location difficulties such as travel time and distance) were primary factors affecting participation. Family characteristics such as additional caregiver demands, caregiver burnout, having more than one child on the spectrum, child behavioural challenges, and child characteristics were also described as factors affecting participation. Future researchers should consider these factors when conceptualizing studies involving parents to promote social validity and enhance research quality. Keywords: Autism, parenting, barriers, facilitators, research participation