DOI: 10.3886/e240841
title: Parent Therapist Partnership Survey - Illinois Early Childhood Special Education

description: This study seeks to examine the early childhood special education (ECSE) therapy involvement experiences, needs, and recommendations of parents and caregivers, focusing particularly on caregivers of color (referred to as parents), whose children with developmental disabilities recently transitioned into ECSE. This research uses focus groups and surveys to answer four questions: (1) What are parents of colors' experiences participating in their children’s ECSE therapies? (2) What barriers do parents experience that impact their ability to be involved in their child’s ECSE therapies? (3) What recommendations do parents have for providers and schools to improve opportunities for parents to be involved in their child’s ECSE therapies? And (4) How do parent and child demographic factors, identities, and resources influence parents’ ability to participate in their child's ECSE therapies? These findings may inform the development of an equity-focused intervention that increases parents’ ability to participate in ECSE therapies. Aim 1 seeks to conduct focus groups, led by parents with lived experience, to explore the nuances of interactions with ECSE therapists as well as to identify barriers to and recommendations for increased parent involvement. Aim 2 seeks to collect survey data from focus group participants to provide complementary insight into participants’ demographic factors, their child’s needs, their experiences of caring for their child with a developmental disability, and their child’s service access. Synthesized findings provide nuanced insights into parents of colors' experiences with ECSE therapies and identify actionable steps to improve quality of care delivered to children and their parents in ECSE settings.
description: Dataset includes raw scores as well as calculated scores for standardized meaures.
description: Presence of Common Scales: Survey scales:<br>1. Parent and child demographic questionnaire (included)<br>2. Parent-Therapist Partnership Survey (available at https://sites.northwestern.edu/familycareparentinglab/ptps/)<br>3. Parent Stress Index, Short Form, 4th Edition (not included due to licensing restrictions)<br>4. PROMIS Early Childhood Parent Reports - Anxiety, Depression, and Irritability 4-question measures (available at https://www.healthmeasures.net/explore-measurement-systems/promis/intro-to-promis/list-of-parent-pro...)<br>5. Ages and Stages Questionnaire (not available due to licensing restrictions)<br>6. Parenting Sense of Competence Scale (available at https://www.bristol.ac.uk/media-library/sites/sps/documents/c-change/parenting-sense-of-competence-s...)<br>
description: Caregivers were recruited through two mechanisms. Most caregivers were recruited through the electronic medical record at Lurie's Children Hospital in Chicago, IL based on icd-10 diagnostic codes associated with conditions commonly seen in special education. Interested caregivers were sent recruitment materials through MyChart and could then express their interest in participating. Interested caregivers were then contacted via email to confirm their eligibility, and eligible caregivers were sent a personalized link to a password-protected version of the survey. Caregivers completed the survey and could then express interest in participating in a focus group at the end of the survey. Additionally, caregivers were recruited through sharing recruitment materials with local disability organizations and on social media. These parents had to complete a screener, and responses were verified by the PI.<br><br>For the focus group, interested caregivers were contacted in July 2024. 35 caregivers were then selected to ensure diversity in location, their child's medical/developmental conditions, and family resources.
description: Caregivers of children ages 35-65 months who are enrolled in Early Childhood Special Education (ECSE) and who can read English or Spanish.
description: other; web-based survey; This study involves quantitative and qualitative data. See below for more details.