70 Chapter 3 Limitations The survey sample of the current study covered multiple regions of the Netherlands. However, not every region was represented (in both the online survey and the focus group) and the sample was limited to parents who agreed to participate. The focus group sample held a majority of high educated, Dutch native mothers. Although there was more diversity in the survey sample, participants were mostly Dutch natives. Overall, the survey sample was small with a high non-response rate, since no reminders could be sent to nonresponders. Furthermore, parents were asked to participate when their child was aged six years or younger at the time of diagnosis and results might therefore not be representative for all parents with a child who has ASD. In the focus group, it seemed that only parents participated who had first concerns, whereas no parents were encountered where the professional expressed first concerns (as described in the PCP study). For both the survey and the focus group, parents were asked to reflect back on their experiences with the early identification process. Finally, a characteristic of qualitative research is that data analysis involves interpretation of the researchers, causing a risk of subjectivity. To limit this, the analytic process was done by multiple researchers with different educational backgrounds through extensive discussions regarding coding and developing themes. Conclusion and clinical implications The current study shows that parents often have early initial concerns regarding their child development, but there is a risk that parents don’t feel that their concerns are being acknowledged by preventive and primary care professionals. In order to improve the early identification and initial care of children at risk of ASD, active investment in increasing knowledge and accessible access to suitable healthcare is recommended. Additionally, new strategies that focus on improving family-centered care and shared-decision making should be developed, evaluated and implemented. The proposed diagram can be a useful tool that will help to better understand how difficulties in early identification of ASD relate to perspectives of parents, professionals and child characteristics, and find ways to address difficulties from different perspectives.
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