Date of Award

December 2014

Degree Type


Degree Name

Master of Science


Occupational Therapy

First Advisor

Kris Barnekow

Committee Members

Joyce Engel, Dennis Tomashek


Caregiver Education, Early Intervention, Family Participation, Health Outcomes, Interactive and Critical Health Literacy


Objective: An agency located in the Midwest identified a 30 percent cancellation rate in their federally funded Part C early intervention (EI) program. Parents and caregivers of children with developmental delays tend to access and utilize the health care system and programs aimed at improving developmental outcomes more frequently. These children will likely benefit from caregivers who have ample health literacy to navigate the complicated systems of care. Although the role of functional health literacy (i.e., reading and numeracy skills) on health and developmental outcomes is well documented in the literature, limited research exists on the importance of interactive and critical health literacy on successful navigation and informed-decision making. Thus, this research sought to establish the role of caregivers' interactive and critical health literacy on level of attendance in the EI program.

Background: The most common measures of health literacy, the Rapid Estimate of Adult Literacy in Medicine (REALM) and the Test of Functional Health Literacy in Adults (TOFHLA), appear to be both valid and reliable assessment tools (Davis et al., 1993; Parker et al., 1995). However, these measures are not always true indicators of an individual's level of health literacy (Freidman et al., 2009); likely due to the exclusive focus on reading and numeracy skills (i.e., functional health literacy). Interactive and critical health literacy involves complex skills that individuals use to abstract, apply, evaluate, and analyze health-related information (Nutbeam, 2000). The purpose of this research is to provide support to the notion that interactive and critical health literacy is a vital construct and one that needs to be measured to better understand participation in developmental or EI programs.

Methods: Forty parents and caregivers with children enrolled in the EI program were recruited by their case coordinator at the center. Eligible participants were categorized as either `low attenders' ( < 50% of appointments) or `regular attenders' ( > 80% of appointments), and completed a 28-item questionnaire over the phone. Responses were transcribed and coded to develop an overall interactive and critical health literacy score which was used to assess the relationship with level of attendance.

Results: The findings from the binary logistic regression identified that participant interactive and critical health literacy score was a significant predictor variable to level of attendance, with an odds ratio Exp(B) = 1.962 (CI 95%, 1.016-3.791). These results indicate that participants with a higher health literacy score were almost 2 times more likely to be regular attenders than low attenders. It was also discovered that interactive and critical health literacy score had a statistically significant correlation with percent attendance in participants in the low attender group, r = .598, n = 40, p < 0.0005. Specifically, higher interactive and critical health literacy scores were associated with higher percent attendance.

Conclusion: This study lent support to the value of interactive and critical health literacy on cancellations rates. Results found interactive and critical health literacy scores to be both predictive and strongly correlated with appointment attendance. These findings suggest that the development of an instrument to measure the construct of interactive and critical health literacy may be possible. Developing instrumentation that spans beyond functional health literacy could lead to an improvement in the understanding of the role of interactive and critical health literacy in family participation in EI programs.