Exploring the routine vaccination experience of Australian autistic children and their families: A qualitative study

Study setting and participants

• This study is part of a larger mixed methods study called Measuring Immunisation in NeuroDiverse populations (MIND).
• The MIND study aimed to assess vaccine hesitancy and uptake in families of children with autism, Down syndrome, and children in the general population with no developmental concerns. Participants were recruited between May 2020 and May 2021 through social media and online autism and Down syndrome support networks.
• All participants were eligible to take part in the MIND study if they were caregivers of an autistic child or a child with Down syndrome under 18 years and lived in Australia. Interested participants were invited to complete an online survey to assess their views on vaccination and factors that may affect their decisions about vaccinating their children.
• Participants for this study were selected from a subsample of 65 caregivers who completed the MIND survey in the autism cohort and provided optional consent to be contacted to take part in a qualitative interview to further explore their vaccine decision-making and experiences. The 65 participants were sampled according to the age of the eldest autistic child, the child's autism severity (mild, moderate, or severe, according to caregiver self-report in the survey), sibling composition, caregiver socio-economic status and childhood vaccination practices (i.e. whether caregivers chose to vaccinate, delay or not vaccinate their child).
• We applied a purposive maximum variation sampling technique to support the heterogeneity of the sample and an understanding of vaccination experiences among a range of families. Recruitment continued until no new relevant information was arising during subsequent participant interviews.

 Procedure

The first author (KL, female autistic research assistant, BSc GradDipPsych, with a background in psychology research) and last author (JK, female research fellow, Ph.D. public health with a background in vaccine acceptance and communication research) completed recruitment and data collection remotely in July and August 2021. Initial recruitment phone calls were made to introduce the study and invite participants to take part in the interview. Participants who agreed to take part were emailed a Plain Language Statement and Consent Form and provided their written consent before the interview. Participant demographic information was obtained from the MIND survey data once written consent was obtained. Interviews took place via phone call or video conference call according to participant preference and lasted approximately 30–45 ​min. Remote interviews afforded the capture of rich data from the inclusion of participants from a national sample, as well as increased flexibility to schedule and reschedule interviews.

The first author and last author developed and applied a semi-structured interview guide that steered participants to speak about key topics of research interest while also allowing participants the space to explore their personal experiences and generate novel insights about the research topic. To begin the interview, participants were asked to provide additional demographic information not captured in the original MIND survey, including state of residence, the child's sibling composition, and the child's current educational setting. To prompt discussion, participants were asked to describe their journey to obtaining a diagnosis of autism for their child. Participants were then asked questions about their perceptions of childhood vaccinations, their prior experiences vaccinating their autistic child as well as their considerations for future vaccinations and for vaccinating their child's siblings. For participants who had more than one autistic child (n ​= ​7), participants were provided the opportunity to share the vaccination experiences of their other autistic children. All participants received a $10 gift card as a recognition of their time. Interviews were audio-recorded and interviewers wrote notes following each interview to reflect on salient ideas.

 Data analysis

All interviews were deidentified and professionally transcribed. A reflexive approach was applied throughout the study whereby the first author and last author regularly met to discuss their own experience, attitudes, and knowledge about autism. These discussions occurred in the context of planning the study, discussing the interview process, coding, and analysis, and acknowledging the active role of researchers in interpreting the data. The interview data were analyzed in an inductive way to capture new and current local knowledge through participants’ exploration and elaboration of key concepts relevant to their unique views and experiences vaccinating their autistic children.

The first author checked the accuracy of all transcripts by comparing them with audio-recorded interviews. Transcripts were imported into the software program NVivo 12 for storage and organization. Thematic analysis was conducted using the six-phase framework to identify key patterns in the data. During phases one and two, the first author read and re-read transcripts and coded data in NVivo 12. During phase three, the first author organised all codes into initial themes and sub-themes. In phases four and five, the first and last authors met to review and refine the initial themes and sub-themes, then defined and named themes representing a unique and discrete aspect of the data while relating to, but not overlapping with, other themes. In phase six, the first author wrote up and reviewed the final themes to check for logical connection. Final themes and sub-themes were reviewed by all authors. Quotes from participants, corrected for grammar, are included to illustrate sub-themes. The symbol ^ on participant numbers indicates caregivers who had more than one autistic child.

Ethical considerations

The study received ethical approval from the Royal Children's Hospital Ethics Committee (reference number HREC59840).

Results:

 (Key themes and subthemes related to the routine vaccination experience of autistic children and their families.)