Preparing Young People With Intellectual Disability and on the Autism Spectrum for School Vaccination

Abstract

Adolescents with intellectual disability and/or on the autism spectrum may have significant anxiety about receiving vaccination with an intramuscular injection and report lower vaccine coverage than their typically developing peers. Good preparation and education may help these young people manage these challenges. Limited evidence exists about the type of information and education they receive about vaccines and vaccination, if any. This study aimed to understand whether, how and by whom, young people with intellectual disability and/or on the autism spectrum in New South Wales, Australia, are prepared for school-based vaccination in special school settings. Semi-structured interviews and focus groups were conducted with 50 participants, representing four stakeholder groups, including 10 students, 6 parents, 24 education and 10 health staff. Interviews explored the process and experience of vaccination, including student preparation. Accessible methods such as Easy Read resources were used with students. Using thematic analysis, we identified four student preparation themes: (1) students' prior knowledge of vaccination, (2) decisions whether to prepare students for vaccination, (3) preparation strategies and resources, and (4) responsibility for preparation. We found that while students demonstrated understanding of vaccination benefits and expressed preferences for preparation, many parents, teachers, and health staff assumed they lacked the capacity to understand vaccines. Consequently, student preparation was inconsistent—some students were prepared using support materials, while others received no advance notice due to concerns about anxiety. Responsibility for preparation was unclear, with health staff assuming parents handled it, some parents assuming schools were responsible, and teachers viewing preparation as primarily a parental role. The study revealed significant gaps between students' actual capabilities, as well as inconsistent preparation practices and unclear role responsibilities. These findings highlight the need for health communication policies and practices that recognise students' demonstrated understanding and establish clear collaborative frameworks for vaccination preparation.