First Advisor

Sheldon Loman

Date of Publication

Summer 8-8-2019

Document Type


Degree Name

Doctor of Education (Ed.D.) in Educational Leadership: Special and Counselor Education


Special Education




Premature infants -- Services for, Medical referral, Low birth weight, Child development, Parents -- Attitudes, Caregivers -- Attitudes, Premature infants -- Care



Physical Description

1 online resource (xi, 125 pages)


Research has shown that children born low birth weight (i.e., ≤2500 grams) and/or premature (i.e., birth prior to 37 weeks gestation) are at increased risk of experiencing developmental delays, as well as long-standing executive functioning and academic challenges. Despite these well-known risks, children born low birth weight are under-enrolled nationally in Part C Early Intervention (EI) services intended to support developmentally vulnerable children. Little is known regarding why EI enrollment is low in this high risk population, especially given children born LBW are readily identifiable as at increased risk of delays at birth. This study explored EI referral outcomes from a high risk infant follow up program serving children with complex early medical histories that place them at increased risk of experiencing developmental delays to determine how many children referred to EI were ultimately evaluated and enrolled in the program. This explanatory sequential mixed methods study included a quantitative phase characterizing the EI referral outcome and a qualitative phase consisting of interviews with families to explore the parent/caregiver's experience of the EI referral process. Data analysis included descriptive statistics to characterize the sample and Pearson Chi Square and independent samples t-tests to investigate child characteristics associated with successful referral. Qualitative interviews were transcribed and coded for themes in an iterative and cyclical fashion. Results indicate that only 62% of the children who were referred for EI services were evaluated by the program, with about the same percentage of those evaluated being found eligible (67%). Of those who were not found eligible, about a third of children should have qualified based on previous testing and/or medical conditions. However, these qualifying medical conditions were often not clearly documented on the referral form, and not all forms included documentation of the scores from developmental testing. There were also a significant number (71%) of Oregon children referred to EI but never evaluated who were likely to have qualified based on medical history and/or results from developmental testing. There were several key themes identified following analysis of the qualitative interviews. Most critically, the parent/caregiver's perception of the need for the EI referral was identified as an essential factor in facilitating a successful connection to EI. Other key themes included the need to honor the many different demands placed on the caregivers of these high risk children, as well as the necessity of providing clear explanation of the purpose of both the visit to the high risk infant follow up program and the EI referral. The Chronic Care Model is used as a framework for discussing implications for practice.


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