Caregivers’ Experiences Accessing Neurodevelopmental Evaluations for Their Children

This study aims to create and validate a measure that helps researchers understand how parents & caregivers experience accessing neurodevelopmental evaluations for their children.

Participants must be 18 years of age or older, reside in the United States, and be able to read and understand English sufficiently to complete the survey. Participants must also be a parent or primary caregiver of a child under 18 years of age who received a neurodevelopmental diagnostic evaluation in a non–school-based setting within the past two years. Individuals will not be eligible to participate if their child’s diagnostic evaluation was conducted entirely online without any in-person testing or if the diagnostic evaluation was received at no cost as part of a research study; eligibility will be determined using screening questions embedded at the beginning of the survey.

This study involves minimal research interaction and no direct interventions. Data will be collected through an online survey administered via REDCap. Participants will first read the study information sheet and then complete a screening form to determine eligibility. Eligible participants will then complete a demographic questionnaire, the full Perceptions of Accessibility to Neurodevelopmental Assessment – Caregivers (PANA-C) survey, and the Dementia Knowledge Assessment Scale (DKAS) to assess divergent validity. The initial survey session will take approximately 25 minutes. At the conclusion of the survey, participants will be given the option to voluntarily provide an email address to enter a raffle for compensation. This study involves minimal research interaction and no direct interventions. Data will be collected through an online survey administered via REDCap. Participants will first read the study information sheet and then complete a screening form to determine eligibility. Eligible participants will then complete a demographic questionnaire, the full Perceptions of Accessibility to Neurodevelopmental Assessment – Caregivers (PANA-C) survey, and the Dementia Knowledge Assessment Scale (DKAS) to assess divergent validity. The initial survey session will take approximately 25 minutes. At the conclusion of the survey, participants will be given the option to voluntarily provide an email address to enter a raffle for compensation. Fifty participants will be randomly selected to receive a $25 Visa gift card. Providing an email address is optional and is not required to complete the study. Eligibility for entry into the raffle requires that participants (a) correctly respond to at least 50% of the embedded attention check items and (b) provide an email address.

Early and accurate neurodevelopmental evaluations are critical for identifying children’s strengths and support needs and connecting families with appropriate services. However, many families report challenges when trying to obtain these evaluations. This study seeks to better understand caregivers’ experiences and perspectives related to accessing neurodevelopmental evaluations. By identifying factors that may influence families’ ability to obtain these evaluations, this research can help inform future efforts to improve access to diagnostic services and support systems for children and families within the autism community.